It was soon after the premature birth of my twin boys, I realized the irony of the word prematurity. Truth is, I was the one who was premature. Premature to motherhood, premature emotionally to understand what had just happened, premature as to what to expect, premature to be able to handle the life that lie ahead.
That was nearly 18 years ago. Jesse and Jake were born at 27 weeks gestation 1020grams and 980 grams respectively. We were first told not to worry. Plenty of earlier, smaller babies had done their time in the NICU and gone on to be perfectly fine. To quote the Dr., “just thinking of them as growing outside of your body until their original due date and then you can take them home and all this will be forgotten.” But that was not to happen.
Instead, we got a crash course in prematurity and in particular, neurology. A grade III intraventricular hemmorage for Jake and ultimately, periventricular leukomalacia for both….jackpot!
So when we took our boys home, three months later, no one could have prepared us for what our lives would become. The nursery soon turned into a medical suite…apnea monitors, oxygen, pulse oximeters beeping and buzzing 24/7. At first we were totally alone. No one bothered to mention social services while we were still in the hospital. We are privately insured and it was assumed we could handle it…both the daily care and financial devastation. So, it wasn’t until my nervous breakdown at around four months home, that anyone realized we were alone and suffering…all of us. A cousin made a call to someone she knew at an agency and finally, the calvary arrived.
And that truly began life as we would come to know it. Around the clock nursing, non-stop doctors appointments, hospitalizations for various issues that kept on coming. I kept a calendar to see at what point the boys would sleep more nights at home then in a hospital. It took two years to get to even! We chased diagnoses as Jesse was doing things that didn’t seem normal. Yet, every doctor said he was fine or it was reflux or I was crazy. But, something was wrong. He was having seizures, infantile spasms to be exact. And so just when I wrapped my head around the permanent brain injury (PVL) and the reality that they would likely have cerebral palsy, may not walk, talk or be cognitively intact, now we had the most devastating form of seizures and there was nothing we could do and nothing that would cure any of this. When Jesse was finally diagnosed with seizures, the news got worse. He also had atrophic brain stem…so many fancy words but in the end, they might as well have just said- death sentence. It is not possible to live with a brain stem that is progressively atrophying. The doctor gave him 5-20 years. He’s 18. Enough said…
And then Jake. Our beacon of hope. For one whole year, he only had CP. And he was alert, interactive, funny and adorable. He has my eyes, my curly hair and my determination. So what if he got his father’s nose. We can’t all be perfect!!!
But one year later, it happened. We were alone with the boys at home. It was Christmas Day and no nurses available to work. We camped out on the living room floor, taking turns napping so one of us could keep a close eye on the boys. We were almost enjoying Christmas Day, laughing at how crazy our house looked with all of us living in one room and blankets, pillows and empty food containers everywhere. If you knew me, you would know, that I am a neat freak so this was a big step! I was cradling Jake in my arms. Steve, my husband, and Jesse watching TV when the first seizure hit. Jake jackknifed, then arched in my arms. I thought for a second I had made it up or it was something else. Like when you hear thunder and you think it might be fireworks instead. I said nothing. I stayed perfectly still praying it must have been my movement that caused his body to jerk. But it happened again and I gasped. Steve turned and the look on his face confirmed what I was seeing, infantile spasms, and the start of the loss of our second child. I spent that New Years in the hospital as Jake underwent testing and started ACTH, an injectable drug thought to help stop IS in many cases. Ours would not be one.
If anyone ever told me I would spend those nights praying to God to please just let them have CP. I spent hours apologizing to God. So sorry if I seemed ungrateful for my sons or mad that they were premature or had a disability. And bargaining to please just let them have CP not seizures. I was already aware of the devastation they would suffer because of seizures and I just wanted it to stop. But it didn’t. The boys have intractable epilepsy and the best we can hope for is medical management but no cure.
Jesse took the big hit. He went from seeing to cortically blind, rolling over to unable to move his own body, eating independently to being assisted for absolutely everything. He suffered cognitively too. At 18 he functions like a 6 month old though he has a beard and is physically a young man the size of a small boy. A beautiful face that occasionally smiles. Green eyes that occasionally connect and luscious lips that blow kisses as a way to let you know he’s in there. I couldn’t love him more and yet, I couldn’t feel more pain each and every time I see him.
Jesse’s needs and his neurological status became too much to manage at home and so, when he was just five years old, Jesse moved to The Center For Discovery. I can still feel the bile rise in my throat as I think of the first time I crossed the threshold knowing what a horrible person I must be. Not to mention a total failure as a mom.
But the Center would prove me otherwise. They talked in terms of potential, a future, learning, growing, thriving and becoming a participating member of this miraculous community. I drank the cool-aide. I had to in order to survive. BUT- they weren’t kidding, weren’t blowing smoke or telling me what I wanted to hear to assuage my guilt. It was real. Very real. The Center for Discovery has taken Jesse well beyond what the doctors and educators predicted or believed was possible. He has learned to assist in feeding and activities of daily living. He has connections with people. He’s clear on who he likes and who he doesn’t and most of all he is loved. And even better, I get to be mom and not just caregiver. While he has suffered some medical setbacks in the past year, the Center for Discovery never gives up and as a result, I don’t either.
And then there’s Jake. Because we caught Jake’s seizures earlier, and perhaps just his own determination, Jake has made good progress. But in 2008, Jake’s seizures worsened. While always present, we managed with medication and the occasional Diastat (rectal valium) to stop the seizures he could not control. 2008 was different. Jake’s seizures almost killed him. Nothing would stop them. We found ourselves faced with the most gut wrenching decision of our lives. Roll the dice and hope the seizures subside, knowing that any one of them could be his last or remove/disconnect half of his brain- a hemispherectomy. We held on for three months but on the day Jake stopped breathing during a seizure and we watched as his nurse did everything to save him, we booked the surgery for February 8, 2009. The surgery went well and the rest of 2009 we would spend recovering and waiting as Jake re-learned the skills he had mastered prior to the surgery. The seizures had subsided and while he remains on anti-epileptic drugs, the few seizures he has are brief and well managed.
The next few years would be nothing short of miraculous for Jake. The quieting of his brain brought about a learning and skill building like we had never scene. His receptive language was always good but now he was trying to speak! We all learned a new language we affectionately call “Jakelish.” He showed us he could read and inhaled books. He laughed at all the appropriate parts of Walter the Farting Dog, listened intently to his beloved Yankee, Mariano Rivera’s biography, The Closer and simply couldn’t get enough.
We were so excited with Jake’s progress but then we hit a wall. The school he attended couldn’t provide the services and education that Jake was now ready to receive. Jake was ready to learn and there was no one to teach him. He wanted so badly to communicate. And so, once again, we turned to The Center for Discovery. We set up an evaluation as an outpatient to help determine Jake’s ability to use a communication device. A day we thought we would never see.
Jake was so excited the day of our appointment. Steve and I watched the evaluation on the other side of a one-way glass. Thank goodness Jake couldn’t see us because as he began responding to the therapists direction, successfully accessing a trial device and communicating, Steve and I balled like babies in the private room. Jake could learn to use a communication device and it took under an hour to figure it out! Well, 15 years and one hour….
But something else happened that day. Something we could not have predicted. Jake saw a world where possibilities existed. A world where he could have a social life, peers, friends. Soon after that day, Jake started asking to live with his brother Jesse. We couldn’t believe it. We assumed he couldn’t possibly know what he was saying. But he persisted. And so in September of 2014, Jake moved to The Center For Discovery where he, once again, shares a room with his twin brother. But Jake made sure to have the best of both worlds. He told us he wanted to go to school at The Center but wanted to come home on weekends. And so he does. Not exactly the same as watching my friends send their kids off to college but good enough for us.
Jake has thrived at The Center for Discovery. He has learned to drive… a power chair, uses his device to communicate, to learn and to play video games. He has friends and attends ball games (his favorite) and concerts at Bethel Woods. I’ve even got him holding a girl’s hand. More than that, I don’t need to know!!!
We still have our crises, we still have our guilt and our blame but on the good days, we have a lot to be thankful for. We will forever ask the question, “which twin is better off?” The one who knows nothing and exists day by day or the one who knows what life could have been…I’m still searching for that answer.