With heterotaxy being a fairly rare disease, those affected by it tend to stay fairly well connected. Especially with the advent of social media, we can share our life experiences across various continents as they happen. While the support and shared stories are encouraging and resourceful, the bitter end of a life due to heterotaxy is very real for all of us.
I grieve for the death of little Noah. I recognize that Noah is in no more pain and can finally be at rest, but I grieve for his Mom, Amber, and his big sister. I can’t imagine having to bury my own child. The thought stops me cold in my tracks every time it crosses my mind. Even while Savannah is still very much alive and mostly well, the severity of her diagnosis is never far away.
Honestly, I’m not afraid of death – not mine or Savannah’s. It’s just that as a father, I grieve for the pain that I know my sweet girl will endure. I grieve at the very real thought of living life without my little girl. It’s so amazing how one little child can change your life forever. I think every person has that parental paradigm shift when they lay eyes on their own child for the first time.
I weep at the thought of losing my sweet girl, as the statistics tell me that I will out live my daughter. I never fully understood King David’s words in Psalm 23 until now. I now know what it’s like to walk through the valley of the shadow of death. I feel like in many ways, Lori and I have been walking through this valley for the past year. Regardless of how much hope or wishful thinking we can muster, the fact is: this has been and will continue to be a very long and lonely road.
Frankly, my spine surgery has made life harder, physically and emotionally. I can’t get around very well without being in significant pain. After three weeks of taking narcotic pain killers every four hours, as prescribed, I stopped taking them on Friday night. Now I’m going through some opioid withdrawal. While it’s very mild, what symptoms I do have are not fun! Likewise, I still can’t drive. I can’t go back to work. All I can really do is lay in bed. I want to be able to get up, be pain free, go to work, and provide for my family!
It’s a tough pill to swallow knowing that I don’t make enough money to pay for my family’s needs. Savannah’s care and upcoming surgery is going to have a significant price tag. Lodging, travel, and food alone will likely be in excess of five grand. Obviously, we’re not including any medical expenses in that, as they will be in the hundreds of thousands of dollars. While I know very few people that could afford to pull this off on their own, I still feel like a failure. It’s as if the number one job that I’m supposed to do in life can’t be done. I know Lori shares this struggle. She spends so much time taking care of Savannah and now me too, that she can’t keep her jewelry business going.
Life is so very hard right now, and Noah’s passing is another reminder of the dark and lonely valley in which we walk. I’d ask for your continued thoughts and prayers for Noah’s family and for us as well. By and by, all I can do is cling to the promises that God has given to us.
Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord for ever.