Happy Birthday, Baby Boy

As time goes by and life moves forward, our previous lives seem more and more unreal.  The people that Jonathan and I used to be seem like figments of our imagination.  We were discussing this earlier today, how our pre-children selves and hospital selves seem like part of a movie that we watched together one time and not our actual reality, much less our reality that we’ve lived in the past two years.

Two years ago today, we became parents.  Two years ago today at 4:38 p.m. we welcomed our little fighter into this world, knowing that he was going to have a tough road ahead of him but not knowing how much he would struggle or for how long.  We welcomed our son Lucas Dean Curry into our lives in the flesh, where as before he was unseen but definitely felt (especially with all his kicking) and already loved.  Two years later, we are remembering that fight, that struggle, and still that love, but now we have to recognize and acknowledge the heartache that is now a part of that mix as well.

First family photo

Today would have been Luke’s 2nd birthday.  In my mind I can’t get past how he should be blowing out his first birthday candle (because no one year old actually does that at their first birthday) and ripping open presents.  We should be teaching him how to smile and say thank you for each gift that he unwraps and birthday hug he receives, as well as taking pictures of him in his cute birthday outfit.  But, unfortunately we are not.  We are yet again reminded of what will never be.

It’s kind of funny how my mind works.  With each time landmark that we should have celebrated with Luke, I mourn two versions of what should have been.  Part of me thinks of what should have been had we never heard of CDH, had those words congenital diaphragmatic hernia never been uttered in reference to our own child.  We should have a walking, babbling, tantrum-throwing little boy that we complain to others for being “such a handful!!”   We should be chasing around a wild child who doesn’t like to wear clothes and is starting to get interested in things like the zoo, and Christmas lights, and playing in the mud.  We should be saying things like, “Oh, yeah, Luke did that when he was younger, too.” or “Ugh, Luke also (enter behavior here) when he was Evelyn’s age, so it’s no surprise.”  However, Luke’s reality would have actually been different than that, had he lived.  We would not have had these same conversations or taken note of these same normal behaviors, but we still would have been talking about him somehow.

As we watch Evelyn move and grow and develop, it makes us realize how far behind developmentally Luke really was…but as we have said millions of times before, we didn’t care.  So, with each monumental milestone in Evelyn’s life, we think of what could have been with Luke, even if it would have been delayed.  With each thought of the events of what should have been Luke’s life, we are more aware of what it should have looked like.

In reality, CDH is a mean beast and did and would have continued to have made Luke’s life harder than “normal” little boys.  We would have been still discussing night nurses and breathing treatments.  We would still be going to doctor’s appointments and following a routine of trach care and sponge baths, probably.  We would have been juggling doctor consultations and what was to come next in Luke’s development both physically and mentally and figuring out how to balance that with the schedule of Evelyn’s life and care.

But what I wouldn’t give for all of that anyways.  I would take endless doctor’s appointments and consultations over not having Luke at all.

Don’t get me wrong.  I love what we have now.  I love our daughter and the life that we are creating with her; but, I wish that I would be able to identify with all the other mothers who talk about how their second child is so much harder than the first because of the extra little one running around while they have to take care of the baby.  My second child will never get to meet my first until she leaves this world.  I yearn for the running around of my first born child as I try to take care of my daughter and for the chance to lament to my friends over the loss of another good shirt to grass stains and dirt.

A couple months ago Jonathan and I were a part of the Remember Me Always ceremony at the Texas Children’s Hospital.  It is an annual ceremony that commemorates all the babies that have lost their battle within the past year at TCH.  I was asked to represent the parents’ point of view and speak at the ceremony.  I was honored to represent and speak to the strong group of individuals that are grieving parents.  I hope that I was able to inspire some sense of hope and encouragement within their hearts with my words.

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I posted part of my speech here, starting with how I felt right after Luke passed away because today I was thrown back to that time in my mind over and over again.  I feel that the words are relevant to the state of mind I had today:

For me, I didn’t know how to react.   I just kept thinking how the battle was over.  There was no more hope of a future where we would be telling the story of all that Luke had overcome and survived.  That was not to be our reality and it just felt unfair.  We were now in a world without our precious child’s spirit and everything just seemed empty.  At the funeral we didn’t know how we were supposed to act.  Were we supposed to be friendly, like hosts of a gathering?  Was I supposed to be crying?  I felt nothing and everything.  I thought maybe I’m supposed to do something to honor Luke.  I’ve always been the kind of person that does things.  I’m a go-getter and am not used to just doing nothing.  So, I should be doing something for Luke since that’s how I could continue to be his advocate.  Is that what God’s plan for me is?  Is that what my purpose on Earth is, what Luke’s purpose was?   Would any of those things keep Luke’s memory alive?  Wasn’t that what I was really trying to do?  Even I didn’t know.  I didn’t know how to feel, what to do, what not to do, what I was supposed to do, when all I really wanted to do was hold my son and imagine the future we were going to have together and all the possibilities. I kept thinking of how much our lives had changed over that year and I felt like we were expected (by no one in particular) to go back to how we were before. 

I’ve struggled for the past month or so trying to think of a way to celebrate Luke’s birthday, so this part of my speech about trying to keep his memory alive applied to how I feel about his birthday.  Last year was our first year without him, so we had a birthday party and invited everyone to celebrate what would have been his first birthday.  However, I didn’t know if that would be appropriate to do again.  I know the automatic answer would be that “whatever I thought was appropriate” would have been fine, but still.  I don’t know if it is “normal” to continue to hold a birthday party year after year for your deceased child, but what do we do?  I didn’t want his birthday to come and go unrecognized and unnoticed.  So, Jonathan and I planned on visiting his grave and going out to dinner to celebrate his life with our own, intimate mini-birthday party (which got postponed because Jonathan is currently sick and in bed).

 We are expected to move on with our lives, minus one very vital member, and act as if everything was normal.  Normal now meant something completely different than before.  We weren’t those people anymore.  It was so weird to see other people around me continue on with their lives normally when ours has been affected so drastically…but why would I expect anything different?  No one else had lost their child.  No one else had made a hospital their home for an extended amount of time, much less almost an entire year.  Everyone had been so supportive and understanding and caring, but how could we ever move on?  I eventually came to the realization that we are not meant to ever move on.  Those that have lost a child can never move on, but we can move forward.  By being a part of this club that we never wanted to join, we can honor the lives and memories of our children and think about how they impacted this world while they were here, however short a time.  I constantly think about the purpose of Luke’s short life and ultimately my purpose.  Luke’s life did have a purpose, one which we might never really learn but about which we can always wonder.  He was here for a reason and he went through all that he did for that reason, to teach us something and it was my job to honor that.  I used to hate when people told me that it would get better, but it really does, even if it doesn’t seem like it at first.

About three months after Luke passed away we got pregnant with our daughter, Evelyn, who was born this past July.  We were not planning on having children so soon, but again it is not our plan, but God’s plan and I guess Luke and Him got together without consulting us and decided that it was the right time.  I believe that had we not had the experience that we had with Luke, that we might have taken many of her small accomplishments for granted.  For example, her crying all the time and staying awake at night is still annoying, but is also such a sweet sound…because we never heard Luke cry.  Evelyn’s ability to wear clothes, to roll over on her own, to nurse, to be picked up without the assistance of three other people are all things for which we are grateful, and of which we probably would not have even taken note of before Luke.

When I woke up this morning, I immediately thought of Luke.  He is on my mind everyday, but today more than most.  As I got Evelyn ready to accompany me to my pie-making party at my friend Sheila’s house, I thought about how things would have been different if Luke were still here and how I would be getting him ready, as well, since Jonathan is sick.  As I held Evelyn today almost nonstop because she wouldn’t let me put her down, I thought of Luke and how I didn’t get to hold him very much, so I wasn’t annoyed with her.  I was grateful for my ability to hold her, even if it meant I wouldn’t get to make my pie (which I did, eventually), but Luke was on my mind all day.   As we all joked around and laughed and cleaned up our mess of flour and sugar and cinnamon and others’ kids ran around us, I imagined how Luke would have fit in with them.  Would he have ran around with the other children?  Would he be annoyingly following one of the older kids, trying to emulate his/her actions and talking, or would he crying to me the whole time?  Would he be interrupting us and telling me over and over again about how he wanted to help?

And as we stood in the kitchen and talked, someone mentioned Luke’s birthday (I wasn’t planning on diverting everyone’s good moods to focus on my reality) and Sheila made a toast to my baby boy.  Even though I often feel that bringing up Luke and his passing almost always makes most people feel awkward and uncomfortable around me, it truly touched me that he was important enough to others to be on their minds today, too, without me saying anything, enough to commemorate his birthday with a pause in our social activities for a toast to my sweet child.

I learned from Luke that life is precious.  Our priorities have changed. Some things don’t seem as important, while other things seem more important.  Simply breathing was a battle for him, but he still fought for the right to do it.  Everything is a gift.  During that year in the NICU we watched how much Luke had changed the lives of everyone around him by simply continuing to exist, to fight for a life that many of us take for granted in this busy world of ours.  We chose to take this experience and to honor Luke by continuing to exist ourselves and to continue to look for the positive all around us and to find the joy in our surroundings.   We have not moved on and we will never forget our first born child.  He will always be our guardian angel and we cherish the small amount of time that we were given.  Luke made us better people and because of him we are able to move forward with a greater joy and appreciation of life, and maybe that was his purpose.

Because of Luke, we truly are better people and I will continue to find the joy around me every day that I continue to be alive.  Happy birthday, sweet baby Luke!  I hope that you are having a fabulous party up in Heaven and are blowing out that birthday candle!

Angelversary

There are many special days that we celebrate and remember for one reason or another:  holidays, birthdays, graduations, and anniversaries, among many others.  Most of the time these are joyous events that people celebrate with friends and family, getting together and partaking in dinner, drinks, parties, or whatever best fits the occasion.

Then there are the days that we remember where a different kind of celebration is appropriate:  the celebration and remembrance of a life that is no more.  These are usually commemorated in a manner that is more personal and quiet than a lavish party or social get-together.  Instead they are a time where those that have lost someone spend a few moments with their own thoughts and emotions, sorting through the memories and reminiscing about all the good times that were had with the deceased.   It could be a different kind of joyous day for someone, full of happy thoughts and laughter; or it can be a grueling time where it seems that the daytime hours drag on forever and ever, never seeming to end.   Depending on where someone is in their grief journey, or where they are on that particular day, determines how the memories effect them.

Today is one of those days for us.  One year ago we lost our precious baby boy, our first born son, Luke.  I was dreading this day all year.  As it approached I wondered, on what side of the memory spectrum would I fall once August 3rd arrived?  Would it be a day where I could sit with my thoughts and smile with the memories of my angel?  Or would I stay in bed with the covers over my head, tearfully waiting it out?

Then August 3rd arrived…and I did not completely fall apart.  I woke up and went about my day like “normal” (there’s that word again).  However, today still feels different.  Every minute of today was spent with my thoughts going back to what we were doing last year at that same minute.  I would think, “Last year we were getting the echo at this time and laughing about how calm Luke was…We were looking at the falling heart rate at this minute…This is the minute where Dr. Suresh and Jennifer were coming into the room to see what was happening with his stats…and now this is the minute that they got the crash cart…This is the minute…” and so on and so on.

It made me sad and my heart hurt, but I was not hopelessly debilitated like I had feared.  I was not thrown back into the dark, lonely world of despair that was August 3rd, 2015.  Instead I felt that I walked around today in a state of awareness.  I was aware of my grief and my sorrow, I was aware of where we were last year and how much things have changed, but I handled it in stride.  I did not crumble and fall.

So much has happened in this past year and it has been so hard to have had to do it without Luke.  I find myself always thinking about what he would have done, what he would have looked like, what he would have been saying, how he would have reacted to the arrival of a little sister, etc.  The list goes on and one.  Every time I look at Evelyn I can’t help but see Luke in her face and then I think about how they would have been together.  One day we will be telling her all about her big brother and how strong he was while on Earth and how he is always watching over her in Heaven.

I feel that this past year I have discovered more about myself than I ever knew.  I learned that I am strong and can move forward.  I thought that when I had crossed the threshold of sadness and sorrow into the dark world where most things no longer mattered, that I would never return; but as the year went on, I began to realize that I would not be stuck there forever.  I have come to the conclusion that my life is now in a perpetual state of healing, though it might be with a giant, emotional band-aid because I will never be fully restored to the same person that I was before Luke passed.  I also have come to the conclusion that God doesn’t want me to be that same person.  I am meant to hurt and heal, to experience loss and find purpose again.

This is a shorter post today and not as organized and focused as I usually am, but I wanted to make sure to write something because I did not want this day to come and go without commemorating my little boy on his blog.  So, here are some of the happy memories that I chose to think about today:

He didnt know that sticker wasn’t attached to anything but he was quite happy with himself when he got it off.

We forgot how big the room was without the ecmo machine.

I love that you can see him looking around the pages.

Medical Parade

Holding Luke for the first time!

Finally seeing his face!

He loves his little “lollipops” which is infant oral care sponges dipped in water or breast milk.

Daddy reading some bedtime lullabies before going to sleep.

He is fascinated by the chimes.

Mommy kisses are funny.

Mommy kisses are HILARIOUS!!

Smiling and stretching at the same time.

Today I choose to remember the good times we had with Luke in his short life.  As each minute passed today, I remembered Luke and that is what he would have wanted, I think.  Luke would have liked this.

On This Day

Ok, Facebook, once again you got me.  Today I was alerted to the “On This Day” notification when I opened up the page of this usually helpful and entertaining social media website, and it said that one year ago today I posted, “A lot is going on with Luke right now, please say an extra prayer for him.”  This prompted me to think, as I always do when I see this, “Hmmmm, what was going on a year ago at this time?”  Then it hit me like a punch in the stomach.  Today marks exactly one year since the second worst day of our lives.  I have been dreading the anniversary of this day ever since it happened, and almost forgot about it, until FB kindly put it at the top of my newsfeed.

I know I have already talked about this before, but for those that have not read the part of our blog where I wrote about this last year, and in order to relate the thoughts and emotions of my brain since Facebook enlightened me to my past post a few hours ago, here is the event to which the Facebook reminder is referring.

Last year, on May 16, Luke had what we from then on referred to as the day of “The Code”.  For those that don’t remember (or for those like me that will never, ever forget), this was the day that Luke had a reaction to a lapse in a sensitive medication (we think) and went downhill extremely quickly, to the point where they had to officially “code” him.  They pushed life-saving medications into his body and performed what they could to try and bring his heart rate and oxygen saturations back up into a livable range before it did fatal damage to his heart and brain.  But they were not successful.

This was the day that we were told that they had done everything that could, but that our beloved child would not ever recover.  We then had to make the hardest decision of our lives:  keep him connected to medications and machines that would do nothing but cause him to continue to swell and just postpone what we thought was the inevitable, or take him off everything and let him pass peacefully in our arms.  It was a decision that you only see in the movies, we thought, where someone has to decide to turn off the life support of a loved one and “let them go”, only this wasn’t the movies, this was real life and the life of our only child.

On this day last year we made the gut-wrenching decision to stop the medications that kept our baby boy alive, the same baby boy that had fought through numerous infections and surgeries, the little boy who was not supposed to live past his first day of life but had survived for 6 months, and the same miracle who continuously beat all the odds and baffled the medical staff on a daily basis.  We were told that this was it.  We were out of miracles.  So we prepared to disconnect him from everything except the breathing machine (because I just couldn’t do that to him), got him baptized, did all the things that you apparently do before you let a child go, and then held him as they turned everything off.  We then waited for his heart to stop.  We sang to him, we talked to him and told him how much we loved him, and we prayed.  And we waited.

To wrap up this story with an ironically “happy” ending (considering that we now know what his future would ultimately be) he survived that night.  Against all odds, yet again, he made it through the night and he started to improve when all the doctors said that there was no way that it could happen.  We waited for many hours for what was supposed to take a few minutes, and then Luke turned the tables and prevailed.  Luke yet again proved that he was a fighter that was not ready to go and God yet again showed us how strong and powerful He is.  There was no explanation at the time, or any time after that.  Miracles do happen and we were first-hand witnesses to that on this day last year.

We got to enjoy Luke for a precious 2 1/2 months after that.  I wish that I could write an ending to this story that would talk about how much he improved and how much growth he’s had.  I wish I could tell you how his health has gotten better and the milestones that he has hit and how we have taken him home and then update you on his current status, but I can’t because as much as I can and do write on this blog detailing our lives and our journey, I am not a fiction writer.  The truth is that Luke made many great steps after that and we did see much improvement.  He hit some meaninful milestones (like smiling and laughing!) and we got to see his true personality…before his body started to slowly grow tired.  We were lucky enough to be given the gift of time, even if it was a short gift, but we got more than just May 16 before Luke became an angel.

That’s why sometimes Facebook is a curse with their reminders.  They are meant to show you all the cheerful or funny or memorable posts that you, yourself, have submitted to their website, and for that it is definitely successful; but for people like us who also use it for a way to connect with people and relay information (along with all the fun posts), it is not necessarily a playful feature.  It also reminds us of days that we don’t necessarily want to forget, but still stir up emotions that we might not be ready to handle.

I think all the time how good Jonathan and I are with dealing with our grief and our feelings and how proud I am of us.  I believe that we both have a solid grasp on our mental and emotional health and that we have not necessarily “moved on” but have found a way to remember Luke and all the good days and memories.  We are not sad all the time but can talk about him and smile or laugh instead of breaking down like we used to do and I feel that it has made us both stronger.  For about 95% of the time I can honestly say that I really am at a point where I can handle the thoughts and emotions that I have on a daily basis with a positive attitude because I know that this is part of God’s plan and I know that one day I will see Luke again.  But I also like to fool myself, I guess, into thinking that the pain has completely passed until I get hit in the face (no pun intended) by reminders like these.  Then I am thrown back into my forever reality, for just a little while.

So, to spin it in a positive direction, perhaps I am meant to be reminded every now and then so that I can have a good cry and really think about what is important in my life.  It puts things into perspective and maybe this is a little memo from God reminding me of what we have been through already and how everything that will come up in our future will not compare to days like that…or maybe they will and I’ll be reminded that we are strong and can handle anything (but I really hope they don’t!)

For example, Jonathan recently got laid off from his job at Halliburton.  We knew it was most likely coming with the decline of the oil field in the past couple years, so it was really not that surprising when it finally happened a few weeks ago.  So yes, for those of you who are currently thinking it, we are now two unemployed parents who are less than two months away from welcoming our precious rainbow baby into the world.  We not only have medical bills still coming in (I don’t think they will ever stop), funeral costs/expenses still being deducted, our regular bills to pay, but we now also get to plan ahead for a new life entering our world and all the expenses that come along with him/her as well as getting lucky enough to play the “How does insurance work now?” game!  Yay, us!

Okay.  I’m not telling you that to get any pity, sympathy, or thoughts of OMG!!!  What are they going to do?!?  Not.  At.  All.  I am relaying this to prove a point:  Jonathan and I are going through all this together right now and guess what…we are fine!  Many people focus too much on what they don’t have or what has gone wrong, and we can do that, too, but why?  There are so many things to focus our attention on instead!  There are times when I get down and life gets frustrating and I get sad or a little defeated, but then I remember:  We are alive and healthy and we are about to have a baby!  We are about to bring a tiny, fragile life into this world that God has created and who Luke gets to watch over, and when it is all said and done with, money is merely money and we will figure it out.

Reminders like today help us to continue to put life into the right perspective and to realize what is really important to us.  Now Jonathan gets to be home more and spend more time with the baby instead of travelling all the time.  I planned on being a stay at home mom next year, but now have decided that it is better for us financially for me to go back into the classroom.  Perhaps that is what God has decided that I am supposed to do!  Maybe I am not meant to stay at home the first year but will be emotionally and mentally supported by getting out into the workforce again and helping kids that need to have the encouragement and lessons that I can provide.

I know it sounds cliche, and to be completely honest I sometimes even rolled my eyes when people told me this after Luke passed away, but I truly do believe that everything happens for a reason.  I’ve said it before and my thoughts about it haven’t changed:  God has a plan, we are just not meant to know what it is until we have that conversation with Him ourselves.  All we can do is put our trust in Him that He will show us the way…somehow.

So, one more tidbit to share about what has happened today.  On this day, May 16, 2016 we received a package in the mail.  It was our Molly Bear.  The Molly Bear organization was created by a family who lost their sweet girl, Molly Christine, at 34 weeks and was given a weighted bear by a friend.  So they turned their loss into a mission to help other families going through similar situations.  What the Molly Bear organization does is to “create weighted teddy bears for families coping with any form of infant loss.”  (Molly Bears) You sign up and donate $20 or more and give them information, such as your child’s birthday, angelversary, the weight of your child when he/she was born, along with any interesting facts or things that you want to try to be incorporated into your personalized bear.  They only accept orders one day of the month and their waiting list is months long.  I placed my order back in November when I was still trying to figure out my grief and thought this might help.  After all, we never did get to hold newborn, 6 lbs. 4 oz. Luke.

I still look for signs from heaven that let me know that Luke is doing ok, to reassure me that we will ultimately be ok, too.  The tagline on the Molly Bear website reads, “An angel baby’s cuddle sent to a family in need.”  So, was it coincidence that after almost 6 months since I placed our order we receive our Luke bear on this day?  I think not.

 

Trying to Navigate the “Normal”

Today we celebrate another holiday as a family of 3, with one member looking down on us from Heaven.  We should have an Easter basket with books and plastic eggs for our son to be examining and we should be complaining about all the fake grass strings that he’s trailed around the house.  But, as is our new reality, this holiday has come and will go without the celebratory pictures and obligatory posts to Facebook.

What’s weird, though, is that while I’m thinking of what should but will never be with Luke, I am also thinking about our future and where we will be at this time next year.  Tomorrow I will be 25 weeks pregnant…almost my third trimester.  That’s crazy!  To think of all that we have gone through over the past year and a half, all the stress, the struggles, the happiness and the sadness…and now I’m about 3 1/2 months away from introducing another tiny human into this world and into our lives.  It just blows my mind.  By this time next year, I will have a second child with which to celebrate Easter.  But, it will be the first time to actually celebrate it (outside of a hospital NICU bed).  My brain wants to explode with all the paradoxical thoughts and feelings that I have.

This pregnancy feels almost the exact same as the first time I was pregnant with Luke.  With Luke, I had very little pregnancy symptoms.  With both, I had/have little to no nausea, no pain, and I keep forgetting that I’m even with child (other than my growing belly, which seems huge right now).  I have never-ending heartburn, like I did with Luke, and I’m tired all the time; I was the exact same the first time around.  As with Luke, I have no appetite.  I don’t want to eat…ever.  I wake up full and have to eat based on time instead of hunger, meaning that I have snacks, meal replacement shakes, and meals based on what time it is as opposed to when my stomach cries for sustenance.  It is uncommon for most pregnancies since most women talk about illogical cravings and the constant urge to eat, but it’s nothing different to me.  So, thus far everything is the same as with Luke.  This terrifies me because if everything is the same, then what does that say about this baby’s future?

These were my thoughts leading up to my anatomy ultrasound.  When I had this monumental exam in February (this time at 19 weeks), I wasn’t that nervous leading up to it.  To me, it was just another one of the routine steps that I would have to do as a pregnant woman.  I had many people ask me if I was worried or anxious about the upcoming ultrasound.  My answer was always, “No, not at all.”  And I honestly wasn’t…until that day when I was on my way to the doctor for my appointment.  Then I started to mini-panic.  I let some anxiety invade my thoughts.  I, being the always analytical person that I am, tried to figure out why I was having these uneasy feelings all of a sudden.  The conclusion that I came up with on my drive (which is my way of trying to calm myself down, finding reasons and using logic) is that the last and only time that I ever had an anatomy ultrasound had revealed the terrible defect that was present in my innocent child and would ultimately lead to his death…and I now know that there was nothing that I could do about it.  Last time at this appointment our lives were thrown into chaos and our dreams of having a “normal” and healthy little family were erased and replaced with confusion and uncertainty, and then ultimately: helplessness.

Last time, this anatomy scan wasn’t just a routine ultrasound for us; it was the turning point in the story that was our life…and I realized how terrified I was of living its sequel.

I walked into the imaging office and pretended that everything was okay.  I acted like I was a calm and collected human being.  No, nothing was bothering me, I was totally fine.  That’s what “normal” people do, they do not panic if there is no real reason.  I was called back to the changing room, got into my super stylish gown, and then waited to be called to the room for my scan.  I was eventually brought back.  I was sweating and nervous, but I got up onto the table and waited for my scan to begin.  I was okay…everything was normal…my baby was going to be okay.  The ultrasound technician did her thing; she moved her wand, clicked her buttons, and barely talked to me.  Then in attempt to make small talk, she asked if this was my first pregnancy.

**Side bar:  This is the most awkward question that I am constantly asked.  It’s a completely normal one for people to inquire about, but when those words come out of someone’s mouth, my mind and body instantly freeze.  I don’t want to say no, because in truth it is not my first child.  Luke was and will always be my first baby, my first born son but explaining where he is now makes people uncomfortable.  If I say it’s not my first pregnancy the inevitable questions/comments that follow are:  “Oh, how old are your other children?”  or “How many other children do you have?  Are they excited to be a big brother or big sister?” or “I bet you’re extra exhausted chasing around other little ones.”  To which I have to make another on the spot decision:  Do I politely nod and smile and hope they don’t inquire any further, or do I respond with an answer that will make them uncomfortable?  But at the same time, while it may be an easier way out, I don’t want to avoid this discomfort by saying that yes, this is my first child, because it would be like I’m denying Luke’s existence.  Depending on the situation, I usually tell the truth and the air immediately becomes stale and awkward when my response is, “No, this is my second child.  My first child passed away in August.”  But maybe if I do it with a smile to ensure that I’m okay (even if I am holding back tears that sometimes want to burst free) it won’t be so weird and awkward.  Ugh, such is my new “normal”.**

Ok, so back to the ultrasound.  I decided that in this situation the best answer was to say that no, this was my second pregnancy, but our first child passed away in August due to CDH (hoping that this technician knew what that was since our first anatomy technician so obviously didn’t, seeing that she panicked while reading the images).  I followed up with telling her that I knew there was a small chance of it reoccurring, but that I was super nervous about it anyways and so I had been anticipating this appointment and its results with more caution and worry than most pregnant mothers probably did.  She politely smiled and showed me his/her organs, and continued with her measurements and pictures in silence.

She got all her images, then went to get the doctor to officially give me the results.  The moment of truth was about to happen.  I could feel myself start to panic.  My heart started to beat faster and I started to mentally chastise myself for being so ridiculous; but I was still so anxious of what was the doctor was about to tell me.  Would he/she come in and tell me something was wrong again?  The my unborn child also had CDH?  or a heart defect?  a missing or malformed organ?  or something else that I have never heard of?  Everything was normal last time with Luke, just like everything had been normal so far with this baby.  Would history repeat itself?

The doctor came in, introduced himself, and then said, “Your child does NOT have a congenital diaphragmatic hernia!  That’s what you wanted me to say, right?”  I laughed and said, “Yes!”  He then responded with, “Great!  Then my job is done!  I can go home now!”  I almost cried.  Thank you, God, for sending in a doctor with a sense of humor during one of my moments of mental crisis.  He proceeded to tell me that everything looked great and completely “normal”.  All the organs were the right size and in the right place.  Our baby had a healthy heartbeat and as far as he could tell, he/she was growing and developing exactly like he/she should and currently weighed about 1 pound.  He asked if I had any questions and when I said I didn’t think so, he left me with a smile and some ultrasound pictures.

Just like that, in a matter of about 5 minutes, this pregnancy was different.

I went up to my ob-gyn for my monthly pregnancy check-up.  Last time after the anatomy scan this visit was filled with my confusion and my tears.  I did not know what was happening or what it would mean, and my doctor just sat there and talked with me and then wrote down “congenital diaphragmatic hernia” on a post-it note and then told me that I would need to contact Joanie Hare, a high risk perinatologist who could explain more about this condition.

This time, we talked about how things would be different than the first time.  The first time I was seeing doctors 2-4 times a week, discussing possible procedures, having numerous ultrasounds and scans.  This time, I would come to my monthly appointments and focus on eating healthy and not stressing out my body…like normal pregnant women did.  My questions were not about CDH this time, but instead about what Advocare supplements I could take, what medications I could take for my migraines, what shots I would need to get and when, and if I could still do Crossfit…you know, the normal questions you’re supposed to ask.

The mental picture I have is that of a fork in the road.  One path leads to the CDH, high risk pregnancy world that we were in the first time; the other path leads to the unfamiliar world of normalcy.  With Luke and the CDH path, we found out at 20 weeks that something was wrong and different; we just didn’t realize how much that difference would forever alter our lives and hearts.  From 20 weeks on our world was turned upside down and our “normal” became anything but normal.  However, to us, that was all that we knew since Luke was our first baby, so we adapted as easily as we could.  At this point last time, I was on a completely dissimilar path and I had a team of people monitoring every move that I made and every development that my child had, down to the minute growth of his lungs.

This time I am on the other path, the normal one and it is just as terrifying.  This time around everything is completely routine and on track with what a “normal” pregnancy is supposed to be like, but I am still waiting for the other shoe to drop.  I feel like it is going too well and is too routine and before every appointment I have irrational fear that I am about to be given bad news.  It is hard to accept that everything is on track when that is not what I am accustomed to hearing.  I am used to numerous ultrasounds and constant monitoring, what do you mean I might have one more ultrasound?  That’s crazy talk!  But it is the truth so far.  Last week I went to my monthly appointment and it just reinforced the fact that we are, in fact, on the right path this time.  We continue to venture further into the uncharted waters of normal.  We are in new territory and while we are inexperienced in navigating it, we are still pushing forward…just with more caution.   People often assume, “Well, you know, you’ve been pregnant before.”  But the truth is that no, I do not know.

I do not know, but I am excited to find out.  We know that God has a plan for everything and he lead us down both paths for a reason.  I have said this before, but we will never know what that reason is until possibly the day that I move onto the next world and can ask Him myself.  For now we can only guess.  Maybe we are in the process of learning something that we would not have realized had these events not occurred and had Luke not been taken from us so soon.  Maybe Luke’s life was supposed to teach everyone a lesson in hope, strength, perseverance, love, and faith…who knows.  I do know that on this new path we have to look towards the future and prepare for this tiny human that will make his/her debut in July.  I always did thrive on learning new things so I think I’m as ready as I am going to be!  From this point, everything is untrodden and strange; however, we will continue on this new normal path with God leading the whole way, continually guiding us and giving us strength.

 

 

 

 

God Sent Us a Rainbow

Today seemed like any other day.  I woke up, made breakfast as I caught up with the morning news (man, did I just say that?  I’m old), listened to morning talk radio on my way to work (the entertaining kind…I got my news fix as I ate breakfast), when it hit me:  today marks six months since Luke left us.  It’s been six months since he took his last breath here on Earth, six months since we had to face the realization that our little boy was not going to get better.  I remember that day like it just happened yesterday.  And it’s so weird how normal and ordinary my life seems now.

These past six months have gone by so slowly, but they have simultaneously flown by so fast.  They have felt like an eternity, but also just a mere few days.  As I drove this morning, I got lost in my own head, thinking about where I was last year at this time, what I was doing, what Jonathan was doing, what our nurses were doing, what Luke was doing.  Everything is so just different, but I would give anything to go back in time and do it all over again, just to have more time with my little boy.

For those on Facebook, you probably know about the “On This Day” posts that pop up every now and then, telling you what you had posted last year or about what you commented on this day however many years ago.  I dread these posts.  I dread them because most of them are from last year and have to do with Luke.  Most of them are full of struggle and stress, but also great hope and faith that it would all get better and our story would turn out with a happy ending full of pictures and future posts of Luke as he grew up.  Most of the posts that I did from last year were updates about his current status on the CDH/pulmonary hypertension/BPD/etc. roller coaster and how we knew that he was a strong baby and would make it through whatever was thrown at him.  As we know, that was not the case, and today as I drove to work I thought about how these past six months are just the beginning of a lifetime without my first born child.

Eli the Elephant will always hold a special place in our lives.

Luke would have liked these 🙂

No one ever plans to have a child with a birth defect.  No one ever plans to have a child that will have to struggle every day of his/her life just to breathe, or eat, or lay on his/her side, open his/her eyes, or even just go to the bathroom.  No one ever plans to lose their child, ever, especially to lose them so early.  But as we’ve seen over and over again, our lives don’t always work out the way we plan it.  We have to keep remembering that it is ultimately not up to us.  It’s God’s plan for our lives that comes to fruition, whether we agree with His plan or not.

You know what else we didn’t plan?  To have a baby so soon after losing Luke.  But surprise!  God had other ideas for what our next steps in life would be.

Jonathan and I talked a lot after Luke passed away about when we would want to even start to think about having another child.  I guess that’s just the natural thing that grieving parents do, try to possibly imagine their new future, maybe.  I don’t really know, but that is what we did.   Some of the time we both agreed that we wanted to have a child right away.  We were parents.  We were a mommy and a daddy.  From the moment someone finds out they are pregnant, they think about how their lives will forever be altered.  They look forward to the day that they would be able to bring their child home and start their lives together and dream of what the future will hold for their little family.  However, we were parents without our child.  We thought, maybe having a baby would fill that void that was supposed to have a baby in it.  We were ready to love and care for another human being, but God took him from us too soon.

But at the same time, how could we even think of having another child…ever again?  Much less so soon?  So, other times we both agreed that we would want to wait at least two or three years to have another baby.  We needed to give ourselves time to grieve, to miss Luke, and to mentally and emotionally build ourselves back up to where we could be good parents again.   We wanted a child, but we also did not want to feel like we were replacing Luke in any way.

It felt like a yo-yo of emotions, one day we wanted to already be pregnant with a child, while the next day we were prepared to hold off for a while.  We still go back and forth between the two ideas:  right now or wait a few years?

In the end, it didn’t really matter what we wanted.  God decided for us, and He said now.

There are so many emotions that I have felt since finding out that we were expecting.  I’m all over the place.  I’d like to blame them all on hormones…isn’t that what everyone does when they’re pregnant?  Excuse my insanity, everyone!  I’m pregnant!  But in reality, I don’t think that is soley the cause.  I think that life is confusing in general and my emotions are in a fragile state to start with; and while hormones don’t help, they are not the only reason that I have this wide range of feelings.

I’m trying to put these thoughts and emotions into words, but it is kind of hard to eloquently relate what I am feeling to those that have never been in my position.

First of all, when I first found out that I was pregnant, it seemed unreal.  That is the best way to describe it.  I saw the test and thought, “Well, that’s not right.”  To spare you many details, I’ll paraphrase it:  the timing of Jonathan being home and the way my body was supposed to work didn’t make sense.  There’s a window of time that a woman’s body says, ok, I can have a baby now, and I was nowhere near that window.  So when I saw the test, I was surprised because it didn’t make sense.  Also, I physically and mentally felt no different.  I did not feel sick, I did not feel tired more than normal, I did not feel anything out of the ordinary.  So I assumed the test was wrong.  God just laughed and said, “What window?  Silly girl.  I do what I want!”  Three tests later, I had to admit that maybe it was real.

Even when I went to my first doctor’s appointment, I was prepared for her to say, “Ok.  It looks like you’re not really pregnant.  False alarm.  Carry on.”  But as we now know, that was not how the conversation went.  Instead, I heard the heartbeat of the tiny peanut I am housing and she told me my due date.  Ok, then.  I guess we are going to have a baby!

Now, don’t take my skepticism and disbelief to be a sign that I am not happy.  I am.  Finding out you are having a baby after losing your child feels like a tug of war between wanting to be thrilled about the tiny human that you will soon get to love and nurture for the rest of your lives, but then also wanting to remember and honor your lost child that already eternally inhabits a big chunk of your heart.  Some days I’m over the moon happy!  I am having a baby!!!  I want to tell everyone!  I want to plan a nursery and register for baby stuff and start thinking of what names we will consider passing on to our child.  But then I feel like I should not be so happy since Luke is not here to feel the joy with us.  He did not get to come back to a prepared nursery.  He did not get to have a baby shower.  Luke should be here to be a big brother.  He should be here to whine about his little brother or sister taking all his toys and crying all the time.  His name was an easy and natural choice on which Jonathan and I would instantly agree, so I can’t help but get a little sad when we struggle to think of names for our next child.  Then I think, no, Luke would want for Jonathan and I to be happy and to move forward with our lives.  He would not have wanted us to be stuck in a perpetual state of sadness.  I do like a good game of tug of war, but not in this case.  It is exhausting.

I’ve been asked many things since we announced our upcoming bundle of joy, one of the most common questions being:  Are we worried about he/she having CDH again?  My honest answer:  not really.  CDH is not a common defect.  It occurs just as often as spina bifida or cystic fibrosis, it is just not as well known.  So am I specifically worried about CDH?  No.  However, I am worried about EVERYTHING equally, more so than I would have been had our lives turned out differently.  Before you think, Lynsy sounds irrational, why is she being so pessimistic and worrying about so many things happening?  I’ve thought about this a lot and have come to a conclusion that makes sense, at least to me.

In everyday life, we hear about women becoming pregnant and then having healthy babies.  That’s the norm.  While they certainly do happen, we do not often hear stories about complications, sicknesses, defects, etc. that babies have because the wide majority of babies come out kicking and screaming with healthy bodies and minds.  We are surrounded by normal pregnancies with a sprinkle here and there of problems, usually minor ones.  I am being very general, because I know some of you are thinking of specific people you know that have had issues (so please don’t be offended by what I am trying to explain), but most of the time you hear of women having problems like morning sickness or cramps or headaches, being tired or having swollen ankles…more so than of life-altering problems with their pregnancies and their babies.

That used to be my world, too.  Then we were thrown into the super severe, life-threatening world of CDH and my world became prenatal chaos.  I was pulled out of this comfortable world of motherhood naivety to exist in the realm of the level 4 NICU, where my normal changed.  Now I was surrounded by sick babies with a wide range of problems, most of which I had never heard of before.  For almost a year, this was my reality.  This was what I adapted to my life being and this became my new norm.  I have spent more time around sick children than healthy ones, so that’s what I am conditioned to thinking is going to happen regardless of what I do or don’t do.

So, am I worried about CDH?  Not anymore than I am worried about the rest of everything that can happen to my child.  I know logically and statistically that I am at a low risk for most things, as are most mothers, but I can’t help but worry every single day that something is going to happen over which I have no control.

For now I plan on keeping a positive attitude, I will pray every day for a healthy pregnancy and baby and I will try to be as level headed as possible.  I will attempt to help my growing baby by making an effort to maintain my current level of fitness (which is not stellar, but I’ve been worse) by continuing to exercise with running, Crossfit, and yoga.  I will continue to eat healthy, take my supplements, and have the occasional cookie or burger.  I will try to look forward to the future and plan the best that I can for the tiny human that will show his/her face around July 11, just a mere 5 months away.  **Side note for those that don’t already know:  we are not finding out the gender of our baby until his/her arrival!  It is one of the only things that we can genuinely be surprised about anymore.  No Google searches will spoil this secret!**

The more Jonathan and I talk about it, the more we realize that there is no way that we will ever be able to replace Luke.  I was worried that having a baby so soon would seem like we were doing that and I even questioned myself and really thought about if that’s what I was doing; but we have come to realize that it is just not possible.  Luke was a special, lovable, amazing kid.  He was unlike any child that we will ever have.  Even though we only had him for 8 1/2 months, we will love and remember him for the rest of our lives until we see him again.  We got to see a taste of what his personality was…and we think that he would have been one awesome person had he had the opportunity to live a full life!  Now don’t get me wrong, we are quite convinced that our troublesome child would have been full of energy and drama as evident from the very beginning, but he seemed so determined to live and had a such strong personality that we were ready for it and we did and would have loved every second of it.  When he died, he took a piece of me with him that I will never fill.  But he is in a better, happier place and I like to imagine that he is having a six month party up in Heaven today.

As quoted by the Urban Dictionary:  In the real world, a beautiful and bright rainbow follows a storm and gives hope of things getting better.  The rainbow is more appreciated having just experienced the storm in comparison.  A “rainbow baby” is a baby that is born following a miscarriage, stillbirth, neonatal death or infant loss.  So apparently God and Luke had a conversation in Heaven.  I like to think that Luke gives his baby blessings and will serve as a guardian angel.  While we here on this earth were unsure about what we were to do next with our lives, God and Luke decided that we were ready for Him to give us a rainbow.

A Different Kind of Christmas This Year

What a difference a year makes.

Last year at Christmas, Jonathan and I woke up and was told that the NICU pod we were in was closed because they were doing a procedure on another baby.  So, we reluctantly went to IHOP for a grand Christmas breakfast of pancakes and hot chocolate.  By the time we were allowed to go back into the NICU unit, we were anxious and a little frustrated because we had missed ECMO rounds.  We didn’t expect that much had been discussed because let’s be real:  it was Christmas.  We figured that no one would be doing anything crazy on Christmas since they didn’t have the full hospital staff and his attending doctor was not on that holiday, but we still wanted to make it to every rounds to be in any and all of the discussions.

Imagine our surprise when our nurse, Mindy, informed us that during rounds that morning they had decided to try to trial off ECMO again, with the hopes of coming off ECMO completely that night.

Say what?…They had discussed what again?  We thought we had heard wrong, there’s no way she said what we thought we said.  Getting off of ECMO?  on Christmas?  We were shocked, surprised, nervous, but excited all at once.  Luke had been on ECMO for 25 days.  That was longer than most babies had been on this huge life support machine without a brain bleed and with real hope of ever coming off.  Many babies that were on it that long…well, unfortunately they usually weren’t able to come off successfully because a lot of times being on that long meant that their body could not handle life on its own or their organs would start to fail, so to hear that they thought Luke had made enough progress to actually be extradited from the blood machine was more than exciting!!

All day they weaned him and trialed him off, and he did great the whole time!  Then they made THE decision.  They were going to do the big one, the big trial off.  Then if they were successful, the procedure to relieve him permanently of the tubes and machine he had lived with for more than half his life.

Here is what the room looks like…If you squint through all the machines you might be able to see Luke!

Front of the ECMO machine

Back of the ECMO machine

As we sat in the waiting room that night with Jonathan’s family, waiting for news of success I couldn’t help but think:  If this doesn’t work, I think it’s going to ruin Christmas for me forever.  If I lose my baby boy on Christmas night, I don’t know how I’ll ever be able to celebrate again.  I knew that I needed to focus on the fact that Christmas is a celebration of the birth of Christ and that would always be a cause for celebration, but at the time I was real with myself:  I just couldn’t see past the fact that if the trial off failed, I would still recognize the birth of Christ, but it would also be the day that my baby boy ceased to exist and it was going to be hard forever.

But on the other hand, I also thought:  If this does work, I would have even more to remember and celebrate on Christmas for the rest of my life.  Two Christmas miracles!!!

We waited and waited and waited.  Shweta, one of our fellows and our friend who came in on her day off because she had made us a promise that she kept, came out and gave us the first report:  Luke had made it past the first part where they turned off the machine was doing better than they thought, but they were still waiting to see how his body reacted.

Then, after what seemed like an eternity, Dr. Guillory, the doctor on call that night (who was also the doctor on call the night that Luke was born and almost went on ECMO the first time, so it was very fitting) came out and told us of the success of the trial-off and removal procedure!!!  He was doing better than anyone had expected!!  She told us Merry Christmas and then left us.  After that Dr. Cass came and gave us the same news with numbers and settings, but was also happy to say that Luke was a fighter and he was finally free of the ECMO machine!!

We forgot how big the room was without the ECMO machine.

We were so happy!  We celebrated and cried and then went and visited our baby boy in the room that now seemed too big with the ECMO machine gone.  It was a good day.

I still remember last year as if it happened yesterday.  I remember thinking how it was a miracle!  God had heard our prayers and had given us the best Christmas gift that we could have ever received!  We didn’t know what the future would hold for us, but Luke had made it off ECMO and was doing great, so we knew that we would be ready for anything.  It was going to be a hard journey to complete recovery, but that was a huge hurdle that we had conquered.

What a difference a year makes.

Last year we were celebrating Luke’s freedom from a machine.  This Christmas is different.  If I were to be a good mom, I would say that this year I celebrated his freedom from all machines.  I would say that I rejoiced Christmas morning thinking about how he’s eternally free from tubes and wires and daily blood draws and weekly dressing changes.  He is free from pain and stress and I know he runs around Heaven with all the other babies that have gone before him.  But that is not what I really thought about when I woke up on Christmas morning.

I would like to say that I imagined him having a huge birthday party for Jesus as we here on Earth opened stockings and celebrated Christmas with trees and presents and family and friends.  I would like to say that I feel relieved and grateful for the eternity of happiness that Luke is enjoying, and I genuinely know that to be true.  But if I said that these are the thoughts that I had on Christmas morning, I would be a big, fat liar.

What I actually thought about when I woke up was how empty my house was.  I thought about how alone I was.  Jonathan was at work and had been gone for over a month, which is the reality of his job and has been for 5 1/2 years, but I still knew what he was thinking, too.  Luke should be here.  We should be helping a waddling one year old run around the house on Christmas morning, making pancakes and seeing if he wants to eat solid foods.  We should be watching him stare at the Christmas tree and fire in the fireplace, awed by all the bright and flickering lights.  (Even though I know it is ridiculously hot here in Texas!!  80 degrees!  Sheesh!  But I turned on the air conditioning so that I could light a fire…I know I know, it’s the little things, guys!)  But as much as I enjoyed that, I couldn’t help but wish that Luke was here to enjoy it, too.  He should be opening his first Christmas presents.  He should be pulling things out of his first stocking.  We should be racing to stop him from pulling the ornaments off of the tree that we thought we had put high enough for him not to reach but had misjudged how high he could grab.  Silly pretend us.  Next time we will have to put them higher…we should be thinking that.

We should be posting obnoxious pictures of him on Facebook with Santa for everyone to Like, where he would probably have been terrified (because all kids seem to be), and we would have all laughed at how cute he was.  We should be posting annoying pictures of cute pajamas that say “First Christmas”, even though this would have been his second one, but we would have used those anyways because it would have been his first one home (in reality, if he were still alive he probably would have been in the hospital still, but these are the fantasy thoughts that I had).  But instead, I am clicking Like on everyone else’s pictures, because they are super cute and funny and symbolize the excitement of the holidays.

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I am not upset or bitter about those who have healthy babies and are able to take these pictures.  I have come to realize from being a part of a few grief groups on Facebook that everyone grieves in their own way.  Some grieving mothers are angry at those around them for celebrating, or “flaunting” their pictures; some are super sad and both of these feelings are understandable for what we have all been through; but, I’m not either of those.  I am aware that we each have our own way to deal with our lives and our pain, but I enjoy seeing other babies and other children as they get to experience traditions with their loved ones.  It gives me joy to see that, for lack of a better way of saying it, other families are able to “keep” their children and enjoy these family traditions.  I am honestly jealous for sure, but I do not view others’ joy in a negative way.  I know that I would be doing the same thing had the dice of life been rolled differently for us.

Making cookies with friends. A Christmas tradition that Luke would have enjoyed.

My plan after last Christmas was to always remind everyone of the anniversary of his release from the ECMO “shackles”, and to always talk about his progress, saying things like, “look how far he’s come!” and “Who would have thought that his first Christmas was such a dramatic one!”

Luke would have enjoyed these carolers in front of the Christmas tree at the Alamo.

But, alas, this is not our reality.  In real life, I was alone on Christmas morning, aside from my furry family, yearning for what would never be with Luke.

I trick myself into thinking that I’m doing well, and I really am for the most part.  But, this whole Christmas season I dreaded the intense grief that I knew was going to attack.  I was afraid of getting a Christmas tree for fear that it would remind me how alone we are, but I did and I decorated it…and I was ok.  I was terrified of seeing other baby pictures with Santa or going to the mall to go shopping because I’d see all the cute little kids with their parents…but I survived that as well.  I pray every day to give me strength and have been actually doing pretty well this whole time, so there was a light of hope and joy.  I even had one of my best friends from high school, Crissy, and her son visit on Christmas Eve.  We saw Christmas lights, put Christmas movies on in the background as we started making cookies for Santa, and then we got to play Santa for her son in the morning.  I was hesitant when I originally told her she was welcome to visit because I did not know how I would actually feel; but, I made it through all of that, too.

Christmas morning

I feel like I am a strong person and I have my moments every single day of sadness and longing, but it has become part of my routine and does not cripple me like it used to when Luke first gained his wings.  I cry, I think of what could have been, I pray, and then I go about my day.

I feared everything about Christmas, but I seemed to go through all of it with happiness and genuine joy, thinking about how Luke would have loved every moment of it, and every time I thought of that it made me smile.

Cookies for Santa by our fireplace.

But I was also silly and naive to think that I could make it completely through this holiday without the breakdown.  I thought I could avoid it, but it happened yesterday after Crissy left and I was left all alone in my house, looking at the remnants of Christmas morning and the traditions that were not happening that should be with my one year old son.  Yes, Luke would have loved all of it, and it just wasn’t fair that he was not getting to actually love it with his mommy and daddy.  It was not fair that his mommy and daddy had to celebrate Christmas without him…and will have to do so forever.

So, as strong as I am and as positive as I have been, as much as I have for which to be thankful, and as sure as I am that Luke is up in Heaven having the time of his life with Jesus, His angels, and all the other souls that have left this Earth…I am also a mother without her child and I want him to be here.  I am selfish and weak.  So I let myself have my time to cry and miss him and what could have been.

But you know what?  It’s ok.  I am allowed to do that because I have feelings and there will be times of weakness and there will be times that I will pray to God and let him know how unfair I think He is sometimes.  That’s ok, too.

Last year we didn’t know what the future would hold for us, but we now know part of it.  We can still celebrate Luke’s freedom from the machine on Christmas Day because we got to have anther 7 1/2 months with him after that.  However, this Christmas is definitely different from last year.  Christmas for us will always be significant for many reasons, both good and bittersweet.  It is all part of our story and our journey through this life.

Finding Reasons to be Thankful

It’s been a month since I’ve posted.  There’s no particular reason.  I just think that I have been so busy with the upcoming holidays (which included Luke’s one year birthday) and have tried to keep myself as occupied as possible to avoid falling into a pit of sadness.  I feel that I have been mostly successful.  My daily emotions are still about the same, always teetering between being completely fine and falling apart, which I do not anticipate changing anytime in the near future.  I know I shouldn’t expect to be totally healed and completely functional in only a little under 4 short months since Luke left us, but I always hope that I can wake up and not feel like I’ll always have this bad feeling in the pit of my stomach.  I hope that I can open my eyes and immediately think happy thoughts instead of being instantly greeted by the realization that Luke is still gone and will not ever be returning…but that is our reality.  I think I am at the point where I can go through most days pretty “normally”, doing “normal” things and having “normal” interactions…but there’s always that thought in the back of my mind that I will always be missing something.  There will always be a missing piece from my life that I will never get back again.

This past weekend, last Saturday, November 21, our family of three should have celebrated Luke’s first birthday, one year since he came into our world and made Jonathan a father and me a mother.  As Jonathan and I thought about what we did and did not want to do for his birthday, we couldn’t help but feel sorry for ourselves, if even just for a little bit.  This wasn’t what we were supposed to do for our child’s first birthday.  This was not how we were supposed to celebrate the first year of our first born child’s life.  We should be watching and recording every one of his movements and actions, celebrating his first steps, trying to figure out his first words, or what words the sounds he was making could be.  We should be thinking about what kind of birthday balloons he would enjoy and what toys he would get the most joy from while playing and contemplating what kind of cake he would like to smash his face and hands into after we sang “Happy Birthday” to him.

 

But instead, we were deciding  whether or not to even have a party, whether or not to ask people to come “celebrate” what would have been his one year of life.  We were trying to think about what Luke “would have” wanted or what he “would have” liked at his first birthday.  We were discussing the best way to honor and celebrate his life without him actually being here to celebrate with us, and frankly, that sucked.

 

However, we made it through and I think it turned out nice.  The emotions leading up to his birthday and the actual day were intense and confusing, but at the same time I think both Jonathan and I embraced an overall feeling of happiness on that day.  Our low-key celebration was complete with beautiful weather and good discussions.  We got a brief sense of peace and comfort from seeing and hearing from those that were involved in Luke’s life and those that took the time out of their busy Saturday schedules to come and spend some of it with us to honor and remember our child on what would have marked his one year of life.

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The party was a positive precursor to a meeting we had scheduled for the following Monday regarding Luke.  On that day we met with Dr. Suresh, Dr. Burke, and a couple of our wonderful nurses, Whitney and Nikashia to go over Luke’s autopsy report.  It was a day that I had been dreading since August 3, but I was also anxious for it to arrive.  I knew that we would probably not get very many answers from the report since we had doctors and nurses that paid attention to most details throughout his entire existence and seemed to explore every possible option, but I was also so nervous that the report would tell us something that we missed…or even worse:  something that we caused.

First of all, let me just say that an autopsy report is so confusing!  I felt like we had Dr. Suresh there to not just read the report to us, but to literally translate it since it seemed to be written in a language other than English.  So, needless to say, we were grateful for his interpretation and the explanations, diagrams, and drawings that he generated to help us further understand what was in the autopsy.  The findings were that Luke had severe pulmonary hypertension (which we knew) that was caused by a severe case of CDH (which we also knew).  He had some organs that showed damage due to lack of oxygen, due to the recurring “episodes” that he had, and that to compensate his body started to form muscles around his blood vessels; but, these muscles were causing the blood vessels to close, which caused more episodes, which caused more muscles to form, and so on.  It was a vicious cycle that the body was trying to figure out but just couldn’t.

I asked if there were any signs of dehydration (which was a HUGE fear that I had since we had been so aggressive with trying to reduce his swelling) and was told that there was not.  Thank you, thank you, thank you.  I think that was one of the only findings that I would have never gotten over, because that would have been something that we actually caused, and I would have had a hard time forgiving myself.

There was a lot more information included in the autopsy, but to summarize the report, they found nothing surprising in their conclusions.  This may seem disappointing to some, but to me this was a huge sense of relief.  “Nothing surprising” meant that we had already known everything that we could have known, which meant that we did all that we could have possibly done.  In the end, he passed away due to heart failure.  We knew this was most likely the case because this was what most of us feared in the month or so leading up to his passing.  His body was working overtime and putting too much stress on his heart.  He just got tired and his heart couldn’t beat anymore, so it stopped.  I asked if another baby had this same condition to this same degree, would there be anything that could be done in the future.  I was told no, that there were limitations to modern medicine and this was one of them.  That sucks and I hope that by the time they encounter this situation again they have made enough advances in medicine to help that next baby…but that also means that there was nothing that we could have done differently to ensure a different outcome.  We didn’t miss anything.  We didn’t have that thought of “if only we had known” or “if only we had done this _________” he would have lived.  The reality is, we did everything that we could have done.  We loved Luke with all our hearts and souls and supported him the whole time and he lived 8 1/2 months, which is 8 1/2 months longer than was expected.  Doctors and nurses have limitations.  They are not God, and we know this and are so grateful that they did what they could to give us the 8 1/2 months that we had with our child.

A journal that Luke would’ve liked.

So as the rest of the holiday season started to approach, I tried to concentrate on all the things that I’m thankful for in my life.  When I actually sit down to think about it, it is really easy to find things that make me happy.  Everyone can do it, it’s just that we as a society seem to naturally focus on the negative events and people in our lives and forget about all the things that go right, which is sad because we are blessed with so many good things that happen around us everyday.

I’m thankful for the relationship that I’m still figuring out with God, because I know that He has control over everything in my life and in this world and He is leading me down the path that I am meant to take.  It is because of Him that I have what I have and the reason that I am still living and moving forward, even if I still don’t know what is in store for my future yet.

Having some fun at the LA boardwalk arcade between shifts at work.

I am thankful that I have a husband who works hard…and still has a job!…and is patient and supportive.  I’m grateful that he is a wonderful husband to me and father to Luke.  I’m grateful that he’s different than other dads (we were told this many times in the NICU because Jonathan was so hands-on) because we are not a family that is meant to be like everyone else.

I’m thankful that we had the resources that we had living in Houston and having access to one of the best hospitals in the country to deal with CDH.  We are thankful for our medical team, our large medical family of doctors, fellows, surgeons, NNPs, nurses, respiratory therapists, chaplains, pharmacists…the list goes on and on…who took Luke under their wings, onto their schedules, and into their hearts.

The “Box of Sunshine” sent to us by our nurse and friend, Brittney.

I’m thankful for fabulous family members who have been with us the entire journey, providing prayers, support, and encouragement whenever we needed it.  I’m thankful for great friends and neighbors who have stepped up to the plate without being asked to give us support and love, even when we were not aware of it.  I’m thankful that I can be a guest teacher and surround myself with children without falling apart, especially at my old school where I feel included and supported like a regular staff member as I continue trying to navigate my way back to a normal life.

Celebrating Thanksgiving with the family.  Luke would have liked eating all of this, especially all the desserts (not pictured…there were too many choices!)

I’m thankful that Jonathan has stayed pretty healthy and my health has also been pretty stable this whole time so we were able to put the focus where we needed it to go.  I’m thankful for my Crossfit gym and Crossfit family because they motivate me to get healthy and pursue a lifestyle of fitness, which my body needs in order to continue my journey of healing.  I’m thankful for my pets, for my house, for the wonderful weather that we get in Texas about 5 days a year, for the internet that provides contact and access to communication with people hundreds of miles away and funny memes that make me laugh, for hot chocolate and fires on cold–chilly–nights.  I’m grateful to have food on the table and chocolate available when I need it (which is every day!).

My furry child snuggled up near the fire.

The list could go on and on forever, and I think that people need to realize just how much we do have instead of what we are lacking or missing.  I know that I will always miss Luke, with every ounce of my being and I will think of him every single day, but his life meant something.  His short existence had a purpose, as does all our lives, and I’m determined to open my eyes and see the joy that is woven into our every day activities and surroundings and focus on all with which I have been blessed because that is what Luke would have liked.  That’s what I believe Luke would have done and so he would want us to do the same.  Life really is too short to put the spotlight on anything else.

Never Again Like Before

It has been almost three months since Luke gained his angel wings and I feel as though I am starting to catch a glimpse of what it feels like to move forward.  I’m not moving on because that will never happen, but I am starting to move forward.  About a month ago, the grief had gotten to be so bad that I felt like if I didn’t do something, I would go crazy and would forever be stuck in a black hole of despair and loneliness, lost and unable to ever find my way out.  So, I started to work towards getting my life back to where it was before this whirlwind began.

 I love kids and I love being a positive influence in their lives, I always have, and I needed to find a way to get back to doing what I loved to do:  teach.  Therefore, I started picking up jobs as a substitute teacher to slowly ease myself back into the world of teaching. While in the beginning I had some uneasiness and uncertainty of how I would be around other people and around children, if I would be able to hold myself together and function normally, I’ve been able to keep my composure and so far have done pretty well.

Working out used to be my passion before and during my pregnancy.  So, I have started going back to Crossfit and have managed to make it 2-4 days of classes a week.  I’m very competitive especially with myself, so it is a little frustrating that I’m basically having to start over from square one.  However, I feel like I’m beginning to get stronger and will hopefully get to where I was a couple years ago and be at or beyond the level I was previously at with my fitness.  I know that I need to have patience and that my body will take some time to shed the 30+ pounds that I have gained and build back the muscle that I lost, but eventually it’ll get there and be just like before this all happened.  Even running has started to become another part of my weekly schedule again as I start to add more days that I venture out into the great outdoors to build up my endurance, just like before.

I have also been exploring different hobbies that I have always wanted to pursue.  I have decided that now is the perfect time to get back to the things that I have always aspired to do!  For example, sewing is something that I’ve been wanting to try out my whole life, ever since my grandmother, Nanny, encouraged me to sew as a kid.  We didn’t have a lot of money growing up (big understatement, but it fits here) so a lot of my clothing was made by her.  My annual, elaborate Easter outfit was something that I looked forward to all year long!  It was so exciting!!  So, I have taken a couple short, one time sewing classes that have taught me the basics of sewing and will hopefully be what I need to jump start some sewing projects of my own.  Maybe one day I’ll get to be good enough to engender that same feeling of excitement in my future grandchildren!  Yeah…we’ll see what happens with that.

In addition to sewing, I’ve also played around with the idea of creating a garden again, where I can grow my own vegetables and my own herbs and spices.  We tried doing that before, and it worked for a little bit, but then we did not follow through as much as we should have and our different gardens didn’t last very long.  Now I’m trying to formulate a plan before I actually plant anything to ensure that I’m successful this time around…better than before!

The watering can I bought that reminds me of Luke.

I’ve tried so hard these past few weeks to dive deep into whatever I could to distract myself and get back some semblance of the life that I had before we found out about Luke and CDH.  I have worked eagerly to travel back in time and get to the “normal” that I was at before I got pregnant, when life seemed better and I didn’t have to worry about what other people were thinking when I came into the room or how awkward they would feel and act when I showed up (not said in a bad way, just honestly).  Back then, people didn’t have to worry about what they said or didn’t say to or around me because before, people could openly talk about their children and grandchildren without feeling bad about how I felt about never being able to share these same experiences with Luke.  No one says this, but I know they think it…and it’s ok.  Before, I was social with various groups and super involved with school.  I enjoyed being a member of a team or being a leader, like I have always been.  So these past few weeks have been nice because I felt like I was making headway in this fervent quest of mine to ease back into my life “before”.

Girls’ NIght Out–Being social again!

But, as much as I want to assuage the intense grief and pretend that I can be that person again, I know deep down that it will never be “like before”…never again.  I’m not the same person as “before”.  I will never be that woman…she ceases to exist.  That person was not a mother.  That woman had not laid in bed for six weeks in a hospital to save her child and then given birth to a wonderful, fighting baby boy.  That person didn’t know the first thing about O2 saturations or echo cardiograms or congenital diaphragmatic hernias.  That person did not travel to the hospital every single day for almost 9 months and she did not have the memories and feelings that I have now.  I have battled with myself about those facts.  At times I wish that I could go back in time and not have any knowledge of those things; but then I think how horrible of a person I am to think that!  That would mean that everything that Luke fought for and went through would have been for nothing!  How could I ask everyone to never forget, and still fear that Luke will be forgotten, but then I’m wishing at times that I could myself erase those memories?  Like most of my emotions, this is a paradox that I do and don’t understand.  I think it’s that I never want to forget Luke, or his battle, or what he represents in my life and all those lives that he touched during his time with us on earth…but sometimes it would be easier to escape those memories than it is waking up in a black hole of sadness because I know that I’ll have to wait a literal lifetime to see and hold him again.  Embracing these memories means that I have to face the reality that I will never get to make new memories with him.  I have to keep reminding myself that the hard road is the one that I have to travel, even if I really do not want to do so.

These past few weeks I have realized that I am actually many different people all wrapped up into one being.  As much as I have tried to trick myself into thinking that my grief has gotten lighter and easier and that I’m getting “better”…I have, but not in the same way that I’ve tried.  I realize now that I can’t just push everything off, ignore everything and hope that by not thinking about Luke and the void that I am now eternally carrying, that I will not experience my grief.  I have to acknowledge it and merge it with my everyday life.  I have to find a way to weave it all together.

Trying to merge my old and new lives together. Luke would have liked all of it.

I am somewhat like that person that I used to be, before.  I have been a little more social and have forced myself to get out into the world again.  I’ve taken trips, gone out for “lemonade” with friends, celebrated birthdays and an engagement; I can laugh, be sarcastic, have fun and make jokes like I always have, and it’s all genuine.  But then I have my moments, minutes, or days where I just can’t be that person anymore and I break down.  I just do my very best to do that in private.  I hate crying in front of people!  That has definitely not changed!  But I need to give myself the permission to break down and cry.  That is the part that I’m having a hard time doing.  It’s been almost three months and I am supposed to be stronger and moving forward with my life, all the time, right?  However, that’s not reality.   I felt like, ok, maybe my life experiences have conditioned me to cope better with losing Luke since I’ve always had to be the strong one.  I think I’m making these realizations right now because for the past few weeks I have felt “fine” except for the daily quiet times where I am left with nothing but my thoughts and memories.

New York
Luke would have loved going here, I bet.

Gloria and Allison at Gloria’s bridal shower! We love our nurses!

Then today I had to visit the funeral home because they had a “Life Book” for me (which I didn’t know what that was) and we were going to talk about Luke’s footplate.  Well, I got there and she handed me a stack of programs they had reprinted from the funeral because they had run out that day (so if you want one whether you were present or not, let me know because right now I have a big stack of funeral programs that I don’t know what to do with other than store them with everything else) and his “Life Book”.  This book turned out to be a photobook they had made with all his pictures we had uploaded and some added quotes and backgrounds.  It looks like a baby book, only for a baby that doesn’t get to make new memories.  I almost lost it there, but needed to hold it together so I didn’t cry in front of the funeral home representative.  *Side Note*  I do realize how ridiculous that sounds, that I wanted to be strong and not cry about my dead child in a funeral home where they are used to seeing this everyday, but that is just how I am and I was determined to not cry.  Then we started talking about a temporary footplate to mark Luke’s grave while we wait for the permanent footplate to be created.  We are getting the footplate because we are not allowed to get a monument until the plots are paid off (which are going to take forever) and Jonathan and I feel like Luke deserves to have something at his grave that says who he was and when he lived.  Ugh, so much to think about that I never thought I’d have to think about with my children.  I then went to visit Luke after this meeting and that’s when I realized that I wasn’t “fine”.  As I walked to visit my child’s plot of grass I thought, these thousands of dollars that we’re spending on grave plots and footplates and monuments should be spent getting baby clothes and toys and Christmas presents.  I should be walking around Target with a stroller, not marking a grave site.  We should not be setting up payments for funeral homes, but should be saving up for family vacations.  But, this is our reality now.

So, I will never be that same person ever again, but I’m trying to find a happy medium.  The Japanese have a saying about having three faces that hit home the other day:  The first face, you show to the world. The second face, you show to your close friends, and your family. The third face, you never show anyone. It is the truest reflection of who you are.  This is very true.  With this blog I have merged some of my faces together in hopes of helping others by being real, but for the most part I try to hold my head up high with face #1 regardless and move forward in any way that I can.  I will never again be like before, but I am attempting to embrace this new person that I am becoming.

Same Date, Different People

Some might say that their journey with CDH started with the diagnosis.  Whether it was during the anatomy ultrasound, an ultrasound later on in the pregnancy, or after the birth of their child, most people in the CDH world say that is the moment when their world changed forever.  For the most part, that’s true for us as well.  However, for me personally it didn’t become truly real until October 8, 2014.  That was the day that I allowed doctors to poke holes into my body and put an experimental balloon into my son’s trachea in an attempt to give him more time and better odds at survival.  That was the day that I went to the hospital and underwent the FETO procedure in an effort to give my unborn child any extra chance that we could give him.  That was the day that a completely different person emerged to take over the life that I once had.

It’s so crazy what difference a year makes.  Back then I remember waiting to be taken back for the FETO procedure and being terrified yet excited, worried yet hopeful.  Overall I felt committed and determined to do whatever it took to give Luke whatever I, as his mother, could give to assure that we would feel that we provided every chance possible.  I remember concentrating so hard during the FETO in an attempt to imprint in my brain everything that was happening during the procedure and thinking, “This could be what saves Luke’s life.  This could make the difference.  Oh please, God, let it work and make a difference.”  I remember after the procedure when the sedatives were wearing off, and I recall being in pain and feeling super sick because of the wonderful medicine, the magnesium sulfate (ooooooh, the magnesium sulfate).  It was a medication that was supposed to ward off labor as long as the body would let it, with the side effect that it made the rest of your body feel extremely terrible.  It was also the medication that imprisoned me to my bed for the 36 hours that I was on it because it could possibly cause muscle weakness or something that would make it hard for me to walk and balance on my feet, meaning that I had to become an acrobat with a bedpan for a day and a half (I know, too much information…but it’s what happened!).  At the time I thought, “How in the world do they expect an extremely pregnant woman who just came out of a surgical procedure to balance her entire body weight on her arms and awkwardly wrestle with a bedpan?”  I had to use the bed rails as balance bars for my body!  It was a little ridiculous, not to mention humiliating to have to call a nurse every hour (another side effect of that fabulous drug) to come and help with a bedpan.  Ugh!  But…I did it, because I was going to do whatever it took no matter how miserable or embarrassing it was.  I was going to do it.

On October 8, 2014 we were so full of expectations and uncertainty and stressful but blissful ignorance.  We didn’t know what would happen in the next few days, weeks, months, or possibly years.  But we were looking forward to finding out and keeping a positive attitude.  I left my job, not knowing if I would ever go back and left my home not knowing when I would return and if I would have a baby in tow or not and if he would need extra care above and beyond what a “normal” baby would need. It was the official start of our “new” lives and the end of our old lives as we knew them.  From that day forward, it was full on battle mode against CDH and we were going to put up one heck of a fight for our child.  It was a new and scary beginning and at the time only God knew how it would turn out.

Now, a year later we now share God’s knowledge of the outcome.  We know how the story ended.  I wish I could write a different ending every day, but I’m not the author of my life story or Luke’s life story.  I have tried to be for so long, but it’s not up to me to compose my present or my future stories, or those of my children.  So, I have to sit back and see how my story unfolds.  The world isn’t as rosy as it once was, not that my world was ever really super rosy, but Jonathan and I had worked hard to build (with God’s guidance) a “good” life.  We had more than we deserved to have and we were happy and content.  I was ready to move onto the next step of this “good” life by building a family to love and for which to care and share this happiness and love.  I just didn’t know how short a time I would be given to share my love with my first child.

Jonathan and I have talked about how these last two months have seemed like an eternity.  Every day goes by quickly but also lasts what seems like weeks and weeks.  Looking back on the day that Luke left our earth feels like I’m looking back to events and feelings that occurred years ago, yet still sting as if they happened yesterday. I feel like the transition back into the real world has been so arduous and slow, like trying to find my identity in a new school.  It is a weird limbo that we are currently living in, a kind of mental purgatory of grief in which we are trying to find our way out.  Having a child didn’t happen like it was “supposed” to happen and now I am simply trying to find a way to continue on with my new, “new” life without him and find that happiness and hope again.

Fabric that I found…it’s perfect.

So far I have started going back to Crossfit again.  I have started running again.  I have started hanging out with friends every now and then and have even started dipping my toes back in the educational water by serving as a substitute in different schools.  To those on the outside it might seem like things are back to “normal” and I am as I once was, the same ol’ Lynsy; but, the reality is that I am a completely different person.  Most days I automatically go through the motions of what I think is “normal” but it is so different now and not as easy.  Jonathan may have gone back to work, just like his “old” self, but he is an entirely different person as well.  This is our new world and it is so contrasting to the old reality.  Those pre-October 8, 2014 people seem like total strangers to me.

It has been one year since our world was unofficially officially altered forever.  Many ask, do we think that the FETO did anything?  Was it worth it?  My answer to that is:  ABSOLUTELY.  I believe that it did help Luke’s lungs to grow enough to give him more time on this earth with us.  I believe that it gave Jonathan and I the extra time that we needed to catch a glimpse of what Luke’s personality was and could have been.  I think that the special, tiny balloon gave us moments with our son that we would not have had otherwise, and we are forever thankful that God gave us those opportunities and that precious extra time.  If we had to do it over, we would do it all again in a heartbeat, every single, stressful step.

Today is October 8, 2015 and we are totally different people than we once were.  We are now parents who are trying to figure out what to do with our lives while missing a piece of our hearts.  But we are focused on surviving while we have this time on earth and getting stronger, living life as it comes at us day by day, minute by minute.

Soul Searching

Today is an anniversary that I wish with every ounce of my being did not exist.  My son, my first born, intensely loved child went to Heaven seven weeks ago and to be honest, that sucks.  It’s been seven weeks since looking forward to the future and imagining what our lives would eventually be and trying to plan out all the possibilities.  I always told Jonathan that I wish I could look into the future and see where we’d be next year, how big Luke would be and if he’d still be on the ventilator and narcotics or not, but the sad reality is that we now know the answer to that.  The other sad reality is that if he were still alive today we would be celebrating his 10 months of life by taking pictures of him and the 10 month sticker from the overly expensive sticker pack that I bought from the gift shop.  But, that is not the case and instead of counting up on his months of life, I got to visit an unmarked grave in the cemetery for story time and a one-sided chat.

I know it’s only been seven weeks but I keep wishing that it will get easier faster.  I’ve read many stories about people who have been grieving for months and years…some decades!  This is my new life, one with a gaping hole in my heart that will never be filled.  Every day I feel like I’m waking up into a bad dream that is never going to end.  You know how you do or say something sometimes that you regret and then you develop that pit in your stomach every time you think of it?  Eventually you get over it and move on.  It’s like that, only there is nothing I can do to “move on” or to eradicate that feeling of having that pit in my stomach.  This is my new reality and I wish it were different.

Saturday night I couldn’t sleep (which, since the beginning of time has not been out of the ordinary for me, just now it’s for different reasons) because I was bothered by something that keeps being said to me over and over.  Throughout this whole journey people have commended us for our faith and how strong it’s been.  People have said to me how we’ve never wavered from our beliefs and have gotten strength from God the whole time and how admirable it is, that they wish they were as faithful as we are.  I can’t speak for Jonathan, because I’m sure he’s much stronger than I am, but for myself I feel like such a faker when I’m told this.  I’d like to say that throughout this whole year I was strong and gave up my worries and troubles to God every time I felt them, and for the most part I did; but when Luke passed away, my faith buckled itself into a new roller coaster of doubt and frustration.  That’s when my trust in God started to waver and crumble, to be completely honest.  New questions started to come to the surface about God and the “whys” started to take over.

I have always been a believer of God.  I’m even a member of a Christian sorority (shout out to my Phi Lambs!!) because I wanted to surround myself with other people who shared those same beliefs and hopefully encourage me to grow even more with mine, but I’ve also battled with my faith my whole existence due to how much of a struggle my entire life has been.  For those that don’t know me that well, I’m not going to go into it, but let’s just say that my life has not been a skip through a sunny park with bright rainbows and frolicking butterflies.  However, I made it through it all somehow.  So because of that I’ve always thought that I had someone watching out for me up there.

When our adventure began last year, I wasn’t much of the praying kind.  I would pray occasionally, but not often because it has never been natural for me.  I do not belong to a church and only go every now and then because I have mixed feelings about churches.  However, I found that after the diagnosis, I started to pray more because it felt right, and we didn’t know who else to turn to.  I started trying to reach out to God more and ask for His help and strength.

When we were told that Luke had holes in his heart, I prayed to God that He would help to heal them or else help Luke to survive despite the holes.  Then at the next cardiac appointment…they were gone.  Just like that, with no explanation.  Then we had a small window for the FETO procedure and about a million things that had to line up for it to happen.  It probably wasn’t going to happen, but I prayed anyways.  Then everything fell right into place and we were able to go forward with the procedure.  When I thought my water broke, I prayed.  I kept Luke in for 5 1/2 more weeks.  When Luke went on ECMO I went to the gardens at the hospital and prayed like I’ve never prayed before.  Luke got multiple infections, he was on ECMO for a longer time than most babies, but he still survived it all, without any brain bleeds and came off that terrible machine on Christmas.  I could keep recounting the dozens of times that I prayed and I felt like they were all being answered but it would take forever.

Then “The Code” happened.  If I had any doubts before, they were eliminated pretty quickly that night.  There’s really no other explanation for why Luke survived other than God had a bigger and better plan for him.  So, throughout the whole experience I felt like maybe God was using the situation to make my faith and the faith of the doctors stronger and maybe that’s why Luke was having so many challenges.  I felt guilty that my child was being used as a pawn to teach us all a lesson, but I heard it loud and clear and thought I had the answer to the “why me?” of CDH.  I felt confident that God had achieved what he set out to do and I was now praying every day, multiple times a day:  to give thanks, to ask questions, to request for Luke to get better, etc.  God and I had developed a pretty solid relationship and I felt pretty sure that I’d be given the chance to tell Luke all about it when he was older.

Then Luke died.

That was not supposed to happen!  I learned my lesson, God!  My faith was stronger than it had ever been before!  I felt betrayed.  I felt confused.  I felt angry.  I felt a million different feelings, many that I’m still trying to work through now.  All the whys started coming back and they were now accompanied by new ones.  I thought I had it all figured out.  Apparently not.

So, unfortunately that’s when my faith started to falter.  I wasn’t praying as much because I started to think, “What’s the point?  I prayed a million times before and Luke still didn’t survive.  We had hundreds of prayer warriors, but it was all for nothing because Luke no longer gets to grow up.  He is forever 8 1/2 months, despite all the prayers.”  It’s kind of like when you get in a fight with a friend and you do not want to speak to them anymore.  Only this was not just a petty argument, it was the taking of the life of my child. I started to wonder why God would do that.  Was he punishing me for not praying more or doing more?  Was it because we didn’t give to every homeless person on the street?  Was it because we could have been better people somehow?  Was he punishing Jonathan for something?  I can’t imagine for what.

And then the ultimate doubt started to creep into my mind:  Is there even a God?  Maybe everything that happened was just a coincidence and I was trying to give credit to someone that did not exist because it made more sense to me to do so.  Maybe that’s why our prayers weren’t answered in the end.  My whole world had been turned upside down in so many ways, this idea just added to the chaos.  But I didn’t understand why God would do this, after all that had happened.  It didn’t make sense.  But then I thought, if I don’t believe in God, then that means that there’s no Heaven, which means I’ll never see Luke again.  After that realization I tried to make God talk to me again and to force stronger personal convictions out of selfish desperation.  I started looking for facts to support my beliefs.  I reread Heaven is For Real, then found out that the kid in the book made it all up.  Ugh, disappointment. Then I read 90 Minutes in Heaven.  Ok, it was a really good story and I can only hope that what he says is true and he didn’t make it up, but I won’t really know until I cease to exist on this earth.  I started trying to find answers in the Bible and tried asking God to talk back to me somehow, but I felt empty.  That’s the ultimate feeling of loneliness:  Jonathan’s gone at work most of the time, my child has died and there’s a possibility that I will never see him again…and now I couldn’t even talk to God anymore because He might not be there…but He might…I wasn’t sure.  I didn’t know about anything anymore.

This is why I say that I felt like a faker.  My faith did waver.  Actually, my faith crashed and burned and I was barely holding onto it.  It didn’t seem “fair” to me that I thought we had done everything that we were supposed to do and Luke fought every day of his life when he did not deserve such a hard struggle, and in the end God still took him from us.  God is the ultimate healer, so why didn’t He heal Luke?  What was Luke’s purpose, then?  What was my purpose?

That brings me to last Saturday.  I couldn’t sleep because I was holding on to a sliver of hope that God was still up there and listening to me, but felt afraid that I might be praying in vain.  I then felt guilty about all the people who were looking up to us for being so strong in our faith throughout and after this journey.  Speaking for myself, I was an impostor.  I was not as strong as I once was and now I was questioning everything.  Saturday I prayed again anyways for guidance and I asked: What is the reason for all of this?  What is my purpose here on earth if not to be Luke’s mom?  I still wasn’t clear with myself what I really did or did not believe, but I wanted to try to reach out to God for answers anyways.

Afterwards I was looking around on Facebook and a notice popped up, like an ad, from the Woodlands Church about Don Piper, the author of 90 Minutes in Heaven.  He was going to be a guest speaker during the sermon the next day.  I read his book, I felt lost in my faith journey, so ok.  Why not go and surround myself with inspiring people and really see where I stand with God.

I went to the service and the pastor gave a sermon from his series about strengthening relationships.  He spoke specifically last Sunday of doing this in the midst of “storms”.  He talked about working hard to keep a good relationship with your spouse during crises.  I don’t think this applies to us because I feel like this situation has made Jonathan and I closer than before.  But then he spoke of not losing faith in God during these “storms”.  Normally I take away bits and pieces of the sermons at church, those that I can relate to or apply directly to my life, but that day I felt like he should have started off his message with, “Lynsy Curry, this one’s for you.”

He spoke of not losing hope when you feel like you can’t go on anymore, like if you lost a child.  He actually used that as one of his examples!!  He spoke about how storms can “grow your character, clarify your priorities, and strengthen your commitments”.  My interpretation is that storms happen to make you a stronger person and make you realize what is and is not important in your life.  Then he went on to say that God is the anchor.  God made promises and will help you through your storm because it is happening for a reason.  I can’t do his sermon any kind of justice, but that’s what I internalized from it.

When Mr. Piper appeared for his interview, he described what happened to him and discussed how you shouldn’t lose faith even when you can’t see the reasons why things happen the way they do.  Then he said, of course, “For example, you might ask God, why did you take my child?”  Come on, really?  I get it, God.  I get it.  I’m listening.  He went on to say that God does that not to punish you, but to help you realize your true purpose in life, which is to help others in the same situation.  It happens so that you may be the support for other people who are hurting.  Your purpose here on earth after something like that happens to you is to be someone who can lead and guide others who are lost and hopeless.  He said that is why he thinks God sent him back to our earth.

I know this was a long post, but I don’t know how to briefly express all that I’ve been feeling and thinking over the last couple weeks.  Different people have their different beliefs and I respect all of them and do not expect everyone to agree with all that I’ve written in this post.  Some may even judge me for what I’ve admitted, and that’s ok.  We said we would be honest with our blog.  As for myself, I don’t have any doubts anymore.  We as humans are weak, but I know that God has a plan for me, and I’m starting to get a glimpse of an idea of what that is…or at least what I think that is because as I’ve come to learn quite well, I might be wrong about it.  This is a long, arduous road.  I want people to know that it’s ok to doubt and to question.  I think it is normal and if not, it is to me because that’s what happened in my personal journey.  Ultimately God will show you what He wants you to see and He’ll do it on His time.