Finding it hard to smile

You may think I have every reason to smile, but recently I have been finding it difficult to do so. I realize I have been granted the most wonderful gift, the gift that my first born survived open heart surgery, to correct a  Congenital Heart Defect, that he had since birth. He brings me great joy, to the point of tears. I admire him more than anyone else I know. He is 13 years old, he had suffered his entire life with a CHD and was not aware of it. He did not grow as big as the other boys his age and he tired out way before the other wrestlers. However he took the news, just a few short days before turning 13, that he needed OHS better than you would, certainly better than I took it. He never shed a tear. He was in disbelief, thinking the ECHO had to be bring, we call that denial. When he finally came to the realization that this was to be part of his journey, he just showed up to the hospital like it was any other day. While I should smile from ear to ear, I can not keep but thinking, why? Why did this have to happen to him. He is the sweetest kid, kind, caring, funny, smart, respectful. He never causes any problems, yet he had to suffer his entire life, his heart working twice as hard to compensate for the large holes and clefts. Running around like any kid would but feeling empty inside... only to think that is normal. I wonder why did no one ever find this earlier? I am thankful his not one of the children we hear about that was running around and falls over... but in this day and age how could something so severe be overlooked for so long. My next thought is since it was overlooked for so long, what are his long term potential complications going to be ... not only did he suffer for the first 13 years, but how much more suffering will my first born have to endure? Granted I realize that the wonderful surgeons corrected his defects and his heart is working better than it ever did before, and I respect and am forever grateful to his surgeons for taking such wonderful care of my son and for the sports medicine doctor who found the identifying murmur.. but  a CHD is a life long disease.

I don't smile anymore because I feel his life is going to be difficult and I don't want that for him. I don't smile anymore because no matter what anyone tells me ... I should have known, I should have pushed the pediatrician harder for reasons why he wasn't growing like the other boys. I don't smile anymore cause now I know the statistics ... my first born has a AVSD, a CHD... they are the #1 birth defects. Thousands of children with CHDs don't not see adulthood or if they do they may require additional OHSs.  I don't want this for him... I want him to live a fulfilling life, with everything he could possibly want, with no pain, no more surgeries and nothing but smiles.