Every once in awhile, for whatever reason, you connect with a stranger.
I have often said that having a child with a special medical condition is like being a part of a secret club that you never wanted to be a part of. Maybe the closeknit sense of family stems from the fact that all of the members feel the same way.
Once you have stayed up all night sick to your stomach with worry on the eve of open heart surgery day, it's impossible to forget what it feels like. Dare I say that it is a form of PTSD? Because it creeps up on you, haunts you and not just the memory of it but ALL of it. The feelings, the worry, the sinking feeling. So whenever another member of our secret little society has a child going in for surgery, I get ill. I feel it all over again
and then when they come off of bypass and I get to watch them get stronger and stronger, I FEEL the triumph and celebration.
In this secret world, we also lose children. It's a tough pill to swallow and it always hurts, knowing that the child lost could be any child and that his/her parents loved him the same way you love your own.
It serves as a reminder that though surgeries are becoming more and more successful, Congenital Heart Defects are an evil thief and claim lives every single day. Sometimes it's easier to pretend that CHD is not the number one killer of babies in their first year of life. That way, you don't have to face the fact that your own child's condition is potentially deadly.
This time, though, it's even different. This week has been full of updates that we know contain so much more than what is actually said. How do you put it into words, without sounding like you have given up hope?
THIS child has left such a surreal impact on me that though I have never even met her, I considered taking the day off of work tomorrow to grieve.
Maybe it's because her face reminds me of Max somehow, or that they're close in age, or even that they were both born with Tetralogy of Fallot? She is really gorgeous and has a stunning smirk as well. She is seriously lovely in every way.
Either way, I have fallen in love with this little girl and her family has become my own. I am hurting so hard, I can't even imagine the terrible pain that her parents are feeling.
I talk a lot about CHD. I openly shared out journey with Max, and I will continue to. I wanted people to understand what a parent goes through and how hard it is...but for a person that has never been impacted by CHD and only finds our story, I want you to know-ours is not representative of the real CHD world. Our journey was hard, but in comparison, it was so easy. Max is a textbook case and has a condition with one of the highest success rates and quality of life. You can't even begin to understand how grateful I am for the hand we were dealt.
For every smooth recovery, there is a family spending months on end in the hospital.
For every successful surgery, there is a child whose heart just wasn't quite ready to begin beating on it's own again.
For every celebrated crooked smile, there is a family holding their baby for the very last time.
For every fading scar, there is a heartbroken 10 year old that just wants to try out for sports, but can't.
There are children waiting on transplant lists. Holding out hope that their new hearts come before their old one gives out.
There are kids with successful transplants praying every month for the rest of their LIVES that when they go in for checkups, there will be no sign of rejection.
There are sweet babies who are sailing through their recoveries, and then unexpectedly-they code. They fight harder than you have ever fought for anything in your life.
Max has overcome so much, and I am SO SO proud of him, his resilience, his FIGHT.
Some days, though, I am angry. On days like today when I want to scream at the world: WHY can't EVERY child recover easily? Why couldn't we watch HER grow? Why does SHE have to go?
WHY.
I HATE congenital heart defects. I HATE THEM.
This is the real ugly cruelty of it all and THIS SUCKS.
Please pray for this incredible family. I have watched them love their child so fiercely that it hurts. I have watched them parent with such grace and strength and have never had such admiration for complete strangers. I know that this couple can take on the world together, and I want so desperately to see beautiful things in their future.
I want them to know the beauty they brought into this world, and the lasting impact it will have on my life. I want them to know that Alayna will never be forgotten and that she will always be lucky to have been theirs
and that she will ALWAYS be theirs.
I want to not have to try to find the right words. I want parents to not have to say goodbye to their babies.
And when you go to choose a cause, and offer your support vocally and financially, I want you to remember Alayna and the kids like her. I want you to know that though you don't hear about them all, that they are 1 in 100. I want you to know that CHD kills more kids than every form of childhood cancer COMBINED.
Where there is suffering, there is suffering and no cause is greater than any other. I get that. I'm not asking you to withdraw your support from another cause and direct it towards CHD. I just want you to know that we're here. That we hurt. That CHD is real and it is life changing and it is heartbreaking.
Please light a candle for Alayna as she is kissed goodnight. Hold your loved ones close and maybe, just tell one friend about the lovely little girl that made the world a little more beautiful just by being in it.
