The day you were born, your mommy and daddy were so scared. We were scared that we were never going to have the opportunity to see our precious boy none the less hold you. But the moment you were born our fears turned to joy. Mommy got to hear you cry, little did I know that would be the only time I would ever hear your precious voice. Your poor Daddy had to wait in the hall outside the OR because the doctors would not let him in, but he got to see you first, as an entire team of doctors wheeled you by on the way to the PCICU. We waited for hours and hours to hear if your first, of what would be many, invasive heart procedures was effective and we could have you for another day. When the word finally came that the doctors had success and you were stable, mommy and daddy were overjoyed. We remember the feeling so clearly it was a moment of the most real and authentic worship we had ever known. We were just both so aware at that moment that God, your Creator, had granted us another moment with you and we were so grateful. Those first few days were so scary. We were thrust into a world we had never known existed and it was so overwhelming. But the amazing doctors and nurses in the PCICU were incredibly caring and spent so much time with us teaching us about this whole new world. We learned a new language, a new culture, and a whole new way to live, where you make each moment count because you are not guaranteed your next.
When you were 13 days old you underwent your first open heart surgery. The night before, your surgeon told us that we could delay your surgery if we weren’t prepared to lose you. We told him that we would never be prepared. We were once again so scared, we cried and cried over you. We had to step away from you for a moment and take some time to eat. As your daddy and I sat on a bench outside the hospital we prayed and begged God to protect you. God gave us a sign at that point in the most unlikely of ways. In the bottom of our fast food bag was the most perfect, heart shaped jalapeno popper! Mommy and daddy laughed so hard, we were stunned and truly believe that God gave us an incredibly silly sign just so we would laugh and be at ease. It worked! Because of your surgery the next day the staff let us hold you for the very first time that night.
God saw you through that surgery. You did so well and began amazing the doctors with your strength. Those first couple of weeks turned into a month and it was then after several attempts at breathing on your own that we began to realize just how damaged your lungs were and we settled in for the long haul in the PCICU. One month turned into two months which turned into four and on and on. You had some really great days and some really really bad days and the roller coaster ride continued. It continued for 8 wonderful months until this past Sunday when you were so unexpectedly taken from us. Our hearts are breaking because we miss you so much but Daddy and I have said over and over that we were never guaranteed day one with you and yet we got 249 days with you. 249 days worth of love and memories that we will cherish forever.
You have taught us so much in your all too brief life on this earth. The constant theme through all you have taught us is love. You taught us how to love you even though we never got to hear your voice or feed you a bottle . You taught us how to love your sisters more deeply and never take a moment with them for granted. You taught us how to love each other through pain and suffering. You taught us how to love other people exactly where they’re at, if they are broken and hurting or if they are rejoicing because of victory. You taught us to see the beauty in each moment. We will never forget the first time we saw you smile 10 minutes before doctors wheeled you off for your second open heart surgery. It was like you saved it specifically for that moment to let us know you were going to be okay. We will never forget the day you got your trach, when you were 5 months old, and for the first time in your life mommy and daddy got to see your beautiful face, free from tubes. It brought us to our knees as we thanked God for the most precious cheeks that we could now kiss. We will never forget the 3 days we had you at home and we were a complete family of 5. We had begged God for that opportunity and although it was the craziest 3 days your mommy and daddy have ever experienced, we will cherish those moments forever.
We miss you terribly but we are at peace knowing that you are now free from the tubes and the monitors, the medications and the surgeries. You are now whole with Jesus and are experiencing life to the fullest. Your heart is perfect and your lungs are pristine. We rejoice that we will one day see you again and that we will finally hear your voice calling us, Mommy and Daddy.
You are our precious, sweet, angel boy. You are our son and we love you all the way to heaven - and back.
- Mommy and Daddy