When Adam fell on May 23rd, we first thought it would be just like any of the other falls that Adam has dealt with and overcome. Adam has a genetic condition called neurofibromatosis type 2 (NF2) that causes benign neurological tumors and has compromised his balance and muscle strength, so unfortunately, his falls have become a part of our lives. This time, we were out running around trying to get Adam’s broken phone repaired before picking up our almost 2-year-old from daycare when Adam tripped and fell walking through the mall.
He seemed OK at first, but we went to the ER just to get checked out since he had hit his head. Suddenly, things went from just having to reschedule our afternoon plans to a crisis, as Adam lost his ability to speak and communicate and became less and less alert. A CT scan found a bleed in his brain, which by evening grew to a major hemorrhage. He underwent surgery that night to save his life, and although he made it through, he is facing a very long and uncertain recovery.
Since that day, Adam has been in the hospital. He has times where he is alert and able to respond to questions with nods or gestures, and he is able to give us hugs with his good arm. So we know he is still there and still fighting through. But he has battled two rounds of pneumonia and is still working to wean off the ventilator. He is currently unable to move the left side of his body, and we haven’t yet been able to hear him speak since he has had to have a tracheostomy placed and isn’t strong enough yet to talk.
Adam is an incredible person, and he has been an absolutely tenacious warrior battling through so many obstacles in his life. His tumors have caused him to go through countless surgeries, lose one eye, lose his hearing, lose function in his leg, lose muscle strength, and so many other obstacles – and in our 9 years together, he has gone from walking on his own to using a cane and then a walker. In spite of all these losses, Adam has pushed through to earn a master’s degree in Linguistics and then finished a PhD from Northwestern in Human-Computer Interaction two years ago, and he has also become the world’s most loving Dada to our sweet little boy.
It has been so devastating for all of us who love him to see him suffer this tragedy after he has already overcome so much, and all of us are feeling lost without him.
We never imagined ourselves having to ask for help this way, but this injury came at a time where, like so many parents with young kiddos, we were working hard to get our family more established and onto solid financial ground. Adam was working as a researcher helping to design a communications platform for people with autism, and I was just starting to return to my work as a therapist after having our son and supporting Adam through a number of other medical crises he has fought through over the past year.
Adam was still our primary income earner and our source of insurance. The doctors have let us know that recovery from this type of brain injury is a matter of months and years, and while we know that Adam is going to fight with everything he has to come back to himself and his family, there is no way to know how much he will get back and what his long-term needs and abilities may be – including if he will be able to work.
We are suddenly faced with losing our main income as a family, while also supporting Adam’s medical needs now and through the future, and all the expenses that will come with that. I will be working to build up my income as quickly as possible, but that means working more hours while splitting every minute I can between being with Adam and also caring for our little one and keeping things as steady and happy for him as possible while he is missing his Dada very much.
We are working on figuring this out and tapping into every resource that we can, but unfortunately, there are many barriers and delays and uncertainties along the way. So we are finding ourselves struggling to find a way to stay afloat with our living expenses while also being with Adam in the hospital as much as possible now to advocate for his care and support his spirit. Once he is medically stable, we expect he will need to go to a rehab hospital in another state in order to get the best care, so we will all be traveling to be with him there as much as we can manage. And we expect if and when he is able to come home to us, he will have ongoing needs for care from both his family members and home nurses, health aides, etc.
It would break Adam’s heart to know that he is not able to provide for his family right now, and I know he would be embarrassed to be asking for help, too. But we are reaching out now to our village and our communities to help us through this impossible time. We are so incredibly touched and grateful for any support you are able to give. Any funds we raise will be put towards Adam’s medical expenses, travel costs to visit with him through his course of rehab as needed, and also our family’s essential living expenses as we make our way through this crisis.
Thank you so much for reading this and for all of your love and support.
