What started as a routine 37-week checkup with our OBGYN, quickly changed to a series of stress tests and ultrasounds, before getting admitted to the hospital for an emergency C-section. The doctors were concerned that Hudson wasn’t getting enough nourishment from mom so the plan was to get him out where he could be nourished and monitored. When Hudson was born he weighed a scale busting 3lbs. 6 oz. This was the least of our worries as he struggled just to breathe on his own. We spent the following 30 days in the NICU and on day 5 we were visited by our Neonatologist. I’ll never forget that moment for as long as I live. He went on to tell us that Hudson had an extremely rare neurological condition called Lissencephally, Miller-Dieker Syndrome. This occurs when the cerebral cortex does not fully develop in utero. It is also known as “smooth brain syndrome,” a condition that affects only 11 children out of every 1-million born. He went on to explain what he knew about the condition, but the only thing I heard from that point on was when he told us it was considered a terminal condition and Hudson was what they categorized as medically fragile.
Needless to say, the prognoses was and is not good for kids with his condition, so for all of Hudson’s life, we’ve been told he’s “beating the odds,” and “the chances that he makes it past (insert age here) are extremely slim.” This is how we know he’s a fighter. He continues to persevere when all odds are stacked against him. It’s amazing how much you learn just by witnessing that.
To try and explain what it was like to learn that our son was not going to grow to be all the things we’d dreamt for him is pointless. Words can’t begin to express the amount of pain and grief that you go through. Very early on my wife and I realized that there was a decision to be made. We could allow this to break us, or we could take what little time we have with him and do our best to make a lifetime worth of memories.
Hudson just turned 2-years old last month, so we’ve “beat the odds” as the doctors say. We may be beating the odds, but I don’t feel as though we’ve gotten through this and come out the other side. Hudson has been in the hospital more times than I care to count. Everything from the flu to a malfunctioning g-tube that almost cost him his life. When you’re considered medically fragile you spend a lot of time in a hospital bed. Hudson deals with up to 50 seizures a day, is non-verbal, has no mobility, and has the brain function of that of a 3-5-month-old. All his “sub-systems” are weakened, so this greatly impacts his quality of life.
I remember when Melaine was pregnant…I was so excited to teach our son all the things that my father had taught me. Things that as a father you look forward to passing to the next generation in hopes that they will grow and learn to be an even better version of yourself. I was so excited, so to learn that it would be different with Hudson was heartbreaking…little did I know that there was the most beautiful gift that would come with the relationship I was building with my son. Never did I expect that my son would be the teacher.
Head Up Heart Forward. This is not just a mantra to us, this is the way we live our lives. Hudson has taught us this. We are blessed to have the perspective that having Hudson has brought us. We consider it a gift that not many are taught. The closeness that our family of 4 has can’t be put into words. This life we live we wouldn’t ask for, but we also wouldn’t change.
The Boeddeker Family