Tuesday, 18 April 2017

The Changing Process

I haven't known how to release the things that are inside me.  Yes writing is my usual outlet- but I haven't wanted an outlet.  All I've wanted is my son to be home with me.  Every time I tried to write and share a post on my Facebook, I deleted it.  It felt too real, too permanent, too scary- as if posting about losing Cooper meant I was accepting that it happened, which I don't think I was ready to do. Thankfully my husband, who isn't typically one to share, was able to find beautiful words at a time when I simply couldn't.  I'm grateful that we seem to have opposing strengths, and have been there for each other throughout this experience.  He didn't know it, but by him being the one to write and share in those early days, he gave me the time I needed to process.  I have known for the past week that eventually I would need to write, I was simply waiting to reach that point in the process. For me, it took a bit longer, but I'm there now.  I'm ready.  Ready to accept, ready to share, ready to heal.

I have gone through so many emotions in the last 2 weeks, and had so many powerful, life changing things happen that I'm confident I'm not the same person I used to be.  I think about things I did even just a few weeks ago, and it seems like a different lifetime ago.  That person decorating Cooper's room, shopping for last minute postpartum items, and day dreaming of bringing home her perfect baby boy, was completely in the dark.  She had no idea that there was something very different in store for her life, and her son's, and it wouldn't be even close to what she was envisioning.

The feelings have been all over the place.  Initially- denial.  Opening my eyes in the morning, convinced for the first few moments that it wasn't actually real, that it was just a bad dream.  The words of the doctors, geneticists, and social worker weren't sinking in.  They were coming out muffled, and I wasn't registering that they were intended for my ears.  I was continuously waiting for the moment when they would change into words I was willing to accept.  Each time someone new walked into my hospital room I told myself this would be that moment when they would tell me they got it wrong and he was going to be just fine.  I was scared to go see Cooper because seeing his little fragile limbs and the tube in his mouth confirmed what I just didn't want confirmed.  I didn't want to respond to messages, post anything, or even look at my own child- I just wanted to lay perfectly still in my bed with my eyes closed until the situation was different.

Next came questioning.  The 'whys' and the 'if onlys'.  I was desperate to make sense of it, but those thoughts and questions only frustrated me and truly served no purpose. I had already been assured over and over again that this was something Cooper always had, and was always going to have, and there was nothing I did or could have done that would have changed the outcome.  As his mother, I found that (and still do find it) incredibly difficult to digest.  I wanted there to be some question that I could come up with that when answered would make this all easier to understand, as if somehow if we understood, then maybe we could fix it.  I asked every single question I could possibly come up with but there just didn't seem to be answers.  There might never be answers.  The best one I have been forced to hold on to is "it just wasn't meant to be".  If we do get answers in 3-6 months when genetic tests come back, we will use those answers to plan for the future, but it won't change how I see Cooper.  I no longer need answers for Cooper, I just know he was here to touch lives and he didn't need long to do it.

Once I had come to terms with there being no answers, it was time to bond.  I was a new mother after all and he was my baby boy no matter how many days he would spend on this Earth.  Not wanting to see him, turned into not wanting to leave his side.  Barely seeing the baby behind the tubes turned into seeing every single feature and recognizing him completely as my boy.  I took in everything about him- he had my ears and my nose, his dad's dimple chin and cowlick, and the most beautiful blonde hair I'd ever seen on a newborn.  The amazing NICU nurses who did "my job"- taking care of my son- allowed me to help.  I changed his diaper, washed his hair and put lotion on his skin.  I knew I needed to soak up every second of doing those motherly things that I certainly would have just taken for granted had I been able to bring him home and do them hundreds of times.  I stared at the monitors that tracked his breathing and heart rate. When he had his "dips" as the nurses called it, inevitably every hour or so, I held my breath while they suctioned his airway, and only started to breathe again when I knew he too was breathing okay.  It was during this bonding time that surprising things started happening.  I went from not really wanting anyone to see Cooper, for fear of it being too hard, too real, or too scary, to all of a sudden wanting the whole family, including Kinley, to have the chance to know and love him. I became excited to see him every time we walked into the NICU and so proud of him every time someone new expressed how precious he was.  I saw a love and bond form quickly between Dave and Cooper that blew me away.  The emotion and love I saw in my husbands eyes when he looked at Cooper, changed the way I saw him, and I fell in love with him all over again.  The tenderness in Kinley's eyes as she stroked his hair and kissed him made me surprisingly happy, though tearful, but happy that she got to meet her little brother. That week turned into making memories with him rather than mourning what should have been.  We brought in things from his room so that his space in the NICU, the only place he would ever know, could look a little bit like the room we had spent so long perfecting for him.  We took dozens of pictures and tried to smile with him, making his short life a happy one.  Though this bonding stage made the next stage WAY harder, I am SO glad I did it.  I'm so glad I fell in love with my son.  It's a love I'll never fall out of, and a love I'll treasure forever.

Next came the hardest part.  The part that I hope is the single hardest thing I'll ever have to experience in my life.  It wasn't the decision that was hard, that was somewhat easy, it didn't even really feel like a decision.  Parents want what is best for their kids, and it was made very clear to us that this would never be a happy life on Earth for Cooper.  He would never eat on his own, would never walk, would always need breathing support and would likely never live outside the hospital. They could prolong his life, but that would simply prolong his suffering.  Seeing him suffer was impossible and I was ready for him to be in a better place where he wouldn't be in pain anymore.  I knew it would be hard- actually, in my first stage of denial I was sure that if this was in fact real, there was no way I would be able to endure this part of the process.  I had even said out loud "There's no way I can hold him when he goes".  But then it all changed.  The change happened first in David, he knew before I knew, that we had to be there.  I saw the strength in his eyes when he said we had to do it and I knew he was right. We were his parents and there was no way we wouldn't be the ones to hold him when he went.

On his last day with us, he opened his eyes a couple times, and it was so nice to see those eyes and say hi to him and tell him how loved he was.  He had family with him the entire last day, taking turns holding him and saying goodbye.  David and I bathed him and a photographer came in to get beautiful photos of him before and after taking the tubes out.  The first 12 hours off the machines were peaceful.  They were quiet- so quiet that we had to keep checking to make sure he was still with us.  We cuddled him, listened to music, sang to him, and told him how much we loved him.  David told him about the new legs he was going to get soon and how much fun he was going to have running around in Heaven.  I told him that we would always love him and that he didn't have to be scared and could go whenever he was ready.  I won't describe the last 2 hours before he finally peacefully drifted away from us because they were terrifying and beyond painful.  I will simply say that having endured that, I'm different.  Traffic, bad weather, spilled coffee, little arguments-- no big deal.  I've done "big deal" now, and nothing will ever be that bad anymore.  I know I have strength I didn't know I had, and that whatever happens in this life, I'll be okay.  We had music playing the whole 14 hours.  Different songs came on the whole night, none of which we selected, they were playing on random.  Cooper passed away during a song called "A Thousand Years" by Christina Perri.  The same song I walked down the aisle to.  The words, which I had heard many times before, suddenly took on a whole new meaning. "One step closer"...with every word in that song, I was watching him get one step closer to peace.  I had to stay so brave that entire time and just focus on my love for him. By the time the song was over, I knew he was gone.  I felt at peace that he was where he was supposed to be, even if where he was supposed to be wasn't where I wanted him to be. The song lyrics are below:

"Heart beats fast
Colors and promises
How to be brave
How can I love when I'm afraid to fall
But watching you stand alone
All of my doubt, suddenly goes away somehow
One step closer
I have died everyday, waiting for you
Darling, don't be afraid, I have loved you for a thousand years
I'll love you for a thousand more" 
I did wait for him, everyday of those 9 months felt like I was waiting for him.  I loved him for 9 months and 6 days, and will love him for a thousand more years.  I hope he's not afraid, I hope wherever he is, he is happy.  I had made a picture for his wall in his room before I knew anything was even potentially wrong and it said "Be brave little one".  He was such a brave little guy.  Keep being brave, Cooper.  Mommy will be with you again one day.  

The last part of this journey was the most unexpected part.  The outpouring of love and support was far beyond anything I could have imagined.  I expected that my friends and family would help me through this, but I didn't expect just how many people would feel touched by Cooper and reach out to us.  I have felt bad that I haven't always responded as I've been dealing with each stage of this grief, but I have read every single word and the love and support has kept me strong in all the hard moments.  I want to be able to thank everyone but I'm not sure my thank yous will ever be enough. I'm not sure anyone will ever understand the overwhelming impact all the support had on me.  I heard from people I never in a million years would have expected to hear from, and I was just blown away every day.  I simply can't believe the kindness and the generosity that was shown to us. It's hard to stay sad when you're constantly being shown so much love.  I hope each and every person knows how moved I was to know Cooper's story was being shared and that so many people cared.  It took my broken heart to a very warm place, and I felt Cooper's presence so strongly through all the love I was receiving.  I will be forever grateful for every single person who supported us in this- it made SUCH a difference.

I feel like I'm on the other side now.  Things are quieting.  Easter Sunday, my due date, the family holiday I dreamed about him being a part of for so long, has come and gone.  Cooper isn't here, but his impact and legacy are here to stay.  I worry sometimes when things feel relatively normal.  It doesn't feel right, it's like I don't want to move on.  I don't want to stop talking about him.  I don't want his memory to fade.  I know I will think about him every single day for the rest of my life. Some of those thoughts will be sad and painful, but I'm hoping and trusting that with time they will become easier. Even when there is hopefully another baby, Cooper will not be lost.  I am so thankful for him and for the love and support we were given.

I am a different person now.  I am Cooper's mom.  I am strong, loved, and supported and I'll never forget any of this.  Thank you, Cooper.  I love you.

The Changing Process

I haven't known how to release the things that are inside me.  Yes writing is my usual outlet- but I haven't wanted an outlet.  All ...