The heart community (parents,family, of children with heart defects) woke to tragic news this morning as one of our own lost their child last night, we lost one of our own. These children that we may never meet, that we watch grow, learn and thrive through our computer screens, they are as our own children battling this terrible thief. We fight for our own children along with these children. Fighting for awareness, for research and funding so that one day, maybe, just maybe there will be a cure for the #1 killer of birth defect related deaths. The killer that effects 1 in 100 babies every year, that robs a high percentage of parents from their child reaching a year old.
My heart aches for this mother. It feels torn in-two.
And at times I just feel numb.
I feel scared for my own child, scared of losing him. With his next open heart surgery coming up it hits hard, as I have already had anxiety, and nightmares of him passing through the night, or coding in his recovery room. The thought of seeing him so weak and vulnerable again is truthfully.... sickening. Literally I feel sick to my stomach to think of what he has to go through again. That I have to hand my beautiful child over AGAIN.
To have his body poked and prodded on, his body full of lines, cannulas. A tube down his throat to breath for him, his body cooled and his blood cycled back through his body by a machine, his chest cut and sternum cracked and his tiny imperfect heart re-routed again to help him to sustain LIFE.
All while he is 18 months old!!
This life is not fair, what he endures to survive is NOT FAIR.
And its not fair that we have to constantly worry about losing him, no matter how good he looks, no matter how well he is doing right now, it is a HUGE possibility. The odds are stacked against us. These surgeries were never made to FIX him, he will never have a whole heart, and he is not eligible for the surgery that would make his heart whole because his heart does not qualify. The side that is sustaining him is already diminished in function. This side has to last the REST of his life or he will require a transplant. But even then, not all children are qualified for a transplant, and thousands die each year just waiting on one. And not to mention SOMEONE HAS TO DIE for my child to get a heart, meaning someone else will have to lose their child.
There is no break from this. There is no getting over it and moving past like a bad break up. It will ALWAYS be in the back of our minds, the what if its his heart, what if he doesnt wake up. What if today is the day I lose him.
Everytime our community loses a child we ALL mourn, we all hurt, there are no dry eyes amongst us. Because a piece of us died with them, because we see ourselves in them, we see our kids in them. They are our kids heart brother/sister. They are OUR KIDS.
And everytime it is a slap back into reality that NONE of us are immune to this. No matter how well our kids are doing, we can lose them at a moments notice. This beautiful boy who had his 3rd surgery (the same that Waylon is getting ready to have) and has been doing so wonderful, then out of the blue a cough and a trip to the emergency room for a check up.
You read that right. A cough. So YES the crazy, narotic, germaphobe that you call me has a reasoning behind it all. A reason to worry when her child starts acting a lil funny, starts coughing, a lil more blue than normal.
I have not been able to hold back tears today. Each time I look at my son they flow down my face. Each time I pick him up, I hold him tighter, study his face more and burn the image of him into my mind again trying to remember that very moment. I smell his lil forehead and his soft hair, smelling the vanilla pediasure he dripped into it just minutes earlier as he smiled and laughed because he thought it was hilarious. Oh and the sound of his laughter, gold to my ears.
And then I think, how can I live without this lil being. How can our family get through losing him. How can my heart withstand that, and the empathy for so many of my friends in the heart community comes through. And I think of how strong they are, how beautiful in their own right they are.
I know this stuff doesnt mean much to others. Their lucky. They get to worry about a new movie with a hunk coming out and how thats the highlight of their day. They get to worry about gas money, bills, how their hair looks this morning, how someone said something not so nice about them.
While we, in the heart community, have to worry if our child will even make it through the day. How we will pay the bills if they end up in the hospital for a long period. Where we will send our other kids when that happens and how we will be without them for who knows how long. They dont have to worry about these things, and they are lucky.
But my life has been touched by an amazing child, a child with more strength than half of the adults I know.
And I will fight for his story and ALL of his heart siblings stories to be told. I will fight for his survival as much as I can and without the help of those who want to turn their eyes to something that can affect them, and I will fight for them to understand this life because it too can be theirs one day. They too can be effected by CHD.
There is no safe place, not even after his third surgery. The time when we are suppose to breath easy and feel like we will be able to live life without as much worry. And it hurts, and truthfully, pisses me off that people dont understand that!
I only wish I had known of CHD before my son was diagnosed, I knew some, but not nearly enough. And neither does the general public. That needs to CHANGE!