I remember vividly the day we brought Jessica home from the hospital. She was born in October, and they day we took her home was grey, cold, and windy. They warned us to keep her covered or the wind would take her breath away.
I remember thinking that those doctors and nurses were clearly out of their minds if they thought sending this fragile human home with us was a good idea.
What on earth had we gotten ourselves into?
That was when the enormity of parenting, and the responsibility we had for another human being really hit us.
We have always taken that responsibility seriously.
Now we're parents of adult children. One of them with a life-long developmental disability and now, a life threatening illness.
I am about to tell you what the most daunting thing is about having an adult child with special needs, and it's probably not what you might think.
Yes, parenting Alex is very intense. He requires constant supervision at the level of a toddler. But that isn't the most daunting thing.
You see, parenting is all about the "gradual release of responsibility" (as we teachers like to say). You are preparing your child to be able to make decisions and care for themselves on their own. You may not always like or agree with their choices, and there may be sleepless nights when you worry about their choices, but your job as a parent is to figure out how to let go.
When your adult child has a developmental disability, that decision making responsibility never shifts. You make decisions for them.
Think about it. Imagine being 25 years old, and never having the ability to make decisions for yourself. You don't get to decide where or how you live, where you work, or what medical treatment to undergo. You don't choose when or where to take a family vacation.
We think about that all the time. We decide it all. We take that very seriously. We always try to think about what Alex would want. We think about what's best for him, but we do try very hard to watch, listen, and pay attention to who he is and to give him a voice as best as we can.
We haven't taken Alex on a big family vacation in a few years. For almost a year and a half now, he's been too sick. But before that, our last couple of trips, were a bit challenging. Places Alex used to love didn't seem to be as comfortable or enjoyable for him. I feel comfortable saying that John, Jessica, and I can read Alex really well. That doesn't mean we know for sure what he's thinking.
He can't say, "I'm glad I'm on this trip, but being away from home and around strangers is hard for me."
Or, "I really don't want to be here. Why did you make me come?"
We think we know, and we make our best guess, but that's all we can do is guess.
Moving Alex into a group home was a huge step for all of us. We felt that he deserved to be as independent as he could be. But in reality, he didn't get a vote. He didn't say he was ready, or that he wanted to but wasn't ready, or that he wished he could stay with us.
We watch and analyze a million things, every day. We watch his moods, his body language, his facial expressions. He has transitioned well to his group home, and I feel confident that he is comfortable there. I believe I'd know if he were scared or unhappy.
He takes several medications, mostly mood stabilizers and anti-anxiety meds at this point. We have to be the ones to evaluate how they're working, and watch for signs of side effects. Over the years, he's taken meds that didn't work or clearly made him uncomfortable. Again, we have to watch everything and pay attention to every detail. How much is enough without being too much?
And then he gets cancer. There are so many decisions about treatment. He trusts us and counts on us. We are his voice; his advocates. We have to think about what he would want.
Throughout his treatment, we had to try and communicate to Alex's medical team about who he is and what he needed to be able to participate in his treatment. We had to figure out accommodations. And we had to ask a lot of questions. We couldn't really know what to tell the team until we understood what they were asking of him.
He far exceeded anything we ever could have dreamed he'd be able to do. But I believe he could do what he needed to because he had us at his side.
The hospital was reluctant to commit to 24 hour 1:1 support. They told us we didn't need to be there around the clock, but we knew that if they wouldn't provide that constant support, we had to be there. Honestly, we would have been there anyway.
The thing is that most of the time Alex is super easy. But you get lulled into a false sense of security and then - bam! - he does something unexpected. At Froedtert, they kept telling us that we should go and get out of the hospital. We never went too far, but one of the few times we both left the room, one time that we went down to dinner together, is when he pulled his PICC line. The nurse was watching from the nurses station, directly across from Alex's room, with the door open. She watched him grab the line and yank it out. There was no way she could get there in time. When we left the room the rest of his stay, someone stayed in the room with him.
Getting his regular meds on time was an ordeal for his hospital stays in Appleton. Even in Milwaukee, I would sometimes have to ask for meds. He can't advocate for himself. And the stakes were too high.
With us there, he felt safe. And being with him made us feel slightly less helpless.
Letting go enough to let him live somewhere else is so hard. Getting back to that after he's been so sick is really hard.
It's much more daunting to make decisions for another adult than it is for yourself.
Interestingly, Alex didn't ask to go home when we were at the hotel for the stem cell collection for a week, and he didn't ask to go home when he was in the hospital (except for the day he pulled the PICC - he said, "ride car" several times and then took matters into his own hands). Our last couple of vacations, he asked to go home daily and packed his suitcase every morning.
If he's willing to stay at the hotel when we went to the hospital every day, or willing to stay in the hospital for 19 days, maybe he's ready for a family vacation. Disney has always been our family favorite. Once he gets a little stronger, we'll plan our celebration trip.
We'll keep watching, listening, and letting Alex guide us. We've been trying some new things with his communication app on his iPad. We keep hoping that someday we'll get a breakthrough and he'll find his voice - find a way to tell us what he really thinks. That would be the most amazing thing. Even if it meant he told me all the times I made decisions and I guessed wrong.
But until that day, we'll keep doing our best. We'll keep being his voice and trying to help Alex live his life the way we think he wants to live it.