When I was 7, my brother was 4, and my father was overseas in Korea helping creating water sanitation systems. Dustin got pnemonia. He went into the hospital. It looked so dire the military flew my father home overseas. My father was allowed to come home because the military believed he was doing so to say goodbye to his son.
Dustin had to have his arms strapped down to keep him from pulling out his oxygen tubes. He woke up, strapped down, with tubes on his face, and sometimes unable to see a familiar face. He cried. He hurt. Real tears ran down his face. He had to have an IV, they had to use a cooling pad, the tubes outnumbered his limbs.
We slept in the hospital like it was a hotel. We were a long ways from home. I brought my Super Nintendo and played a whole scenario of Romance of the Three Kingdoms. I made friends in the hospital I played with multiple days. I looked through every toy in the play room. The nurses called me by name.
My parents lives were on hold. Neither worked for whatever span of time it was – 2 weeks? We didn’t have social media then, or cell phones. We called family. My parents grabbed for anything to keep them sane. It was scary. It was miserable.
It was life.
The doctors tamed the infection in my brother’s lungs. His young and growing body regained strength. He began to breath without the tubes. He began to conquer the odds.
My brother came home.
I have a friend, yes, a friend I have never met. He is father to a boy like my brother. I admire him. He is a strong man – who ready or not before the birth of his son – has been built into a hero by his situation. He has an older, more typical son, someone like me when I was younger. He wants to give the best life to his older boy. He wants to protect and save his young and affected son. He wants to be strong for his wife. He wants to win against the demons of doubt that assail him, to be a rock who conquers fear to hold his family together.
Sean, you are capable, but I want to tell you that you don’t have to be all that. My dad wanted to give me the best too, give me a normal life, and protect me from being the older sibling of a terminally ill brother. I wasn’t born to lead a normal life. I didn’t need normal. My life path was carved by the genetic cards in my family. I am healthy and happy today, but wiser and more grateful for life because of what was when I was young. Both your children were born to walk a different path. It may be hard to see how different your older boy’s life is to the average seven year old, but he will grow up knowing he too was meant to be different. He’ll be okay. In fact, I’d like to wager that his circumstances will build an incredible resilience in him which will once day make other obstacles seem common. He’ll be gritty, because he sees your strength. He’ll be compassionate, because he sees your love. He’ll be wise, because he saw you admit to the difficulty and go forward anyway.
My parents couldn’t save me from the way my brother was born, the genetic disease in my mother, or the lost time in my childhood spent in hospitals. But that’s okay – that’s what built me.
I pray often for you and your family, and who knows what those prayers do. Who knows what God wants in a situation like this. It’s so tricky – why would God put a disease in someone? Why would we pray to God to extend a time clock that potentially He assigned to a child at birth? What is prayer in the face of a genetic, terminal disease in a child perhaps fated to die young?
With my brother, I prayed for his healing without the doubt I would carry as an adult. Let me tell you something of the fighter my brother was, the fighter that all children with CMMD can be – with a young and growing body and a family that gives a child a reason to live, CMMD children often make miraculous recoveries with the aid of modern medicine and laugh in the face of the textbook. Muscles can be weak, but a young heart surrounded by love can carry the indomitable strength to push through “terminal” to find part of the meaning of existance.
When Dustin went into the hospital, we never knew if he would come out alive. Many times it seemed like a miracle that he did. Why did God give me a brother like he did? Did God do it on purpose? Was it just natural disaster on a genetic level, a cosmic mistake? I know the way I would grapple with these questions as a parent would be different than I did as a sibling child. When my brother passed at age 13, it was puberty that did it.
Honestly, a part of me was relieved when he passed. He had outgrown my ailing mother’s ability to carry him. More and more of the caretaking burden was mine as a 16 year old. His needs were many, from changing diapers, to brushing his teeth, to lifting him in and out of bed. Do I think God had a plan in the time and day my brother died? Well, I have the biased world view of a girl raised to believe my brother was a special gift from God on earth for a short time from the day I met my brother. Yes, I do.
God brought Dustin into the world different, and in this case, different was sometimes painful, but always beautiful. My brother – he cried, he hurt, he couldn’t always tell us why, but also he loved, he laughed, and he taught us why. I’d take all my pain a thousand times over to be given the chance to know Dustin, to know Jo Lyn, my mother. Not all life is meant to be long. Certainly, not all life is meant to be painless. Not all life is meant to be safe. And neither I, nor either of your sons, were meant to be “normal”. But we were meant for this – ugly, beautiful, a blessing or a tragedy – we were meant for this.
There are demons to slay in the doubt that can come in questioning God’s plan in genetic disease. Philosophically, I wonder why my heart wants a cure if my heart also believes God gave me my brother the way he was as a special gift. Did you know I never donated to any cure seeking organization until I was 25, after my mother was taken from me? I still think it would be tragic if science shaped the world so children like Spencer or Dustin were no longer born. It isn’t a simple question in life. But who needs simple?
God gave me Dustin, and you Spencer, and for that, we are blessed, the lucky ones who see the innocent life on earth and know the spirit of a belligerent fighter who is also a soft lover, a child with genuine curiosity and untainted joy. In college, a woman asked me “Did you ever see it as a tragedy, the way your brother was born?” I was 20. My honest answer was “no.” I know what my parents would have said, but I don’t know if that would have been their honest answer. But your older son, I imagine like me, love has blinded him to the shade of a heart that would see tragedy in the gift of his brother’s life.
My dad wouldn’t have wanted to make it this way, but it was this way, that my childlike optimism was a source for his endurance. His love for my mother meant he wanted to be strong, that he felt he had to save us at times from what was. You want to know an odd truth about tragedy? Sometimes, it is best not to be saved from the pain of what is. Sometimes, experiencing the fear is how we find not our strength, but our meaning. In finding a situation which brings us to our knees, well, that is where we learn the solace in prayer.
I have gone through dark nights in my life. I haven’t always kept a naive faith. I have been incredibly angry at God, and let that anger seep out to hurt His children. I’ve seen my father adrift, unsure of his purpose. I’ve seen my mother unable to go a day without tears. But I stand here today ready to let my scars be the beacon call for my endurance. I wouldn’t trade my past for anyone else’s. I wouldn’t wish away the disease in my family. I would wish to take away my brother’s pain he felt, but my dreams, and my mother’s dreams, they told me he doesn’t feel that any more.
It was an absolute blessing that Dustin was in my life. I thank God so much for giving me an imperfect family. I’ve felt the guilt of wondering why I have the genetics I do, and I wish my mother’s life was easier, but through her weak muscles, I was able to see her great faith. I’m not saying my family’s life was scripted so I would be made stronger, but for whatever reason things were the way they were, I found a deeper love, a real faith, and the resilience to conquer “obstacles” that don’t compare to what my brother battled.
I’m an ethereal stranger who knows you only from your photos and videos and posts, but I know the love in your family, and I know the type of man you are becoming. Know that I pray for you. I pray for your whole family. I picture them in my mind as I pray, and I hope for you and Spencer in ways that pull at the fabric of my heart.
In the maturing evolution of my faith, at first I prayed for miracles, then I prayed “thy will be done” when I no longer believed in miracles. Now I pray not because I believe my earnestness will convince God to change anyone’s genetics, but because I know those prayers change me. Because I believe those prayers matter to what it is to be human, because those prayers build a bridge of love between strangers, because those prayers connect me to the nature of Love that rests within us through the Holy Spirit.
God bless your family. I pray for you in love!