Broken Spirits Lifted Thanks To All Of You
Hearing this guy say, “I love you” (or I should say “wuv ooh”) melts my heart each day. Not a day passes without feeling lucky that we get to experience each of these moments and enjoy new milestones as he develops. We have shared the wild ride that led us to Blake being put on ECMO, and the insanity coming off of it. We had hoped that the worst was behind us and we would now be on the path of progress. However a year ago today brought an unexpected twist of events.
Because time was of the essence for Blake and we needed as much information as possible, we signed our lives away to participate in a genetics study. Typically the sequencing would take 6+ weeks, but through this study, we could get answers within a week. So we gave samples of our blood, as well as Blake’s to hopefully understand if there is something else going on contributing to or causing his condition.
The results were in, and a genetics Dr came to speak with us in our room. She sat down and explained that there was a genetic “mistake” in Blake’s DNA which is evidence of another rare condition that affects 1 in 100,000 people. His heart/lung condition affects 1 in 40,000 – so our odds were really astounding to have two rare issues that interrelate. She calmly communicated in a round about way that because of these complications, he unfortunately is not going to respond to the treatments. I look at her and said, “So, what you’re saying is that Blake is not going to make it.” She put her hand on my forearm and said, “I’m sorry.” In that moment it felt like she had reached into my body and actually crushed my soul. We knew our odds were not good, and he had just gotten off life support, but she stripped us of any hope.
She said there likely isn’t enough time, but our only chance would be to connect with Texas Children’s, be placed on the transplant list and be prepared to move to Houston. I don’t think we could fully comprehend all that she was telling us, but this was the day my spirit officially broke.
At this point we were not strangers to tidal waves of emotion, but the confirmation that he would not survive was too much. We believed in staying strong and positive with him (and all of you), but for me personally – I cracked. Extreme emotional exhaustion from the previous 2 weeks took over. Our family encouraged me to go home for a while. But even though I was completely defeated, I didn’t want to leave. How do you leave your child’s side especially after you’re told he’s not going to live? How would I know if he would make it until I came back? With tremendous guilt, I agreed to go. I cried and kicked and screamed until I fell asleep for about 18 hours. Complete misery.
The next day it was time to get back in the saddle. The #gooddeedsforblake were in full swing. It was YOUR stories, the positivity, the love, support and amazing acts of kindness by all of you that lifted us up. And me in particular. I just felt in my heart that this wasn’t how Blake’s story ends.
That genetics Dr was giving us a prognosis based on numbers, not on Blake. Our science is amazing, but it’s far from perfect. There is no prediction of someone’s spirit or interventions, divine or otherwise. The fact is he was responding to the treatments. He was on a path of improvement. We just didn’t know that.
Blake’s condition is classified as severe. Our intention is that it improves as he grows. His medical records do get sent to Texas Children’s Hospital. He will stay on their radar if in fact the day comes that he may need a lung transplant. But with your continued love, support and vision of him growing into a healthy thriving adult – we plan to never see that day.
#forevergrateful #forblake
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