I had a dream the other night that Noah was standing up walking across the room. He stopped and looked at me before saying, "I knew I could if you would just give me a chance."
It's the second time I dreamed it. Last time was a year ago, and the next day I had to have a heart-shattering discussion with one of our doctors regarding Noah's long-term prognosis and our fight against the infections he deals with. It wasn't exactly a dream come true.
This time I dreamed it the night before Noah's weekly physical therapy visit. We had a different P.T. that week and when I wasn't looking, she got Noah kind of up on his feet bent over more than halfway at the waist - it's hard to explain, but just for a moment he was kinda-sorta up on his tiptoes with his knees bent in a squat and his hips turning his legs out at odd angles while he was bent all of the way over at the waist leaning his weight against his bedside table.
He turned to me and yelled, "Mommy! Look! I can stand up!"
I turned to him and my heart fell through the floor. Part of me was so, so scared that this P.T. (who is truly, truly wonderful but who just doesn't know Noah very well) had created a totally unrealistic expectation for Noah. He was sitting there going on and on about how he can stand up now and how he is going to walk now and I was terrified that his heart would be broken.
The less rational part of me just couldn't stop thinking about that dream and wondering if maybe some kind of amazing thing had happened. Maybe somehow his legs were getting better and maybe I just wasn't giving him his best shot.
Over the course of the next week Jeff and I talked about this quite a bit and I also had some long talks with his nurse. His regular P.T. came for her visit and before I could even talk to her about this, I walked in to hear her saying how much worse his knees were and how very, very much worse one of his hips was. I told her we needed to talk and I explained everything. I don't want to short sell him or fail to support him. On the other hand, I don't want to be that mom who puts her child through torture just to satisfy my own desires when it won't really help or be in his best interest. Everyone who works with Noah knows that Jeff and I feel SO strongly that this is HIS fight and that our job is to support him 100%. It's not our job to try to impose our own emotions on him and on our decisions for him. It has to always be about his best interests and nothing more.
Of course, that stupid dream was making that sort of rational thinking an awful lot harder for me. I might play nurse and advocate and researcher and therapist, but I'm his mommy first of all and the emotions of that dream were pretty hard to ignore. I love who Noah is now, but you cannot imagine how much I miss the Noah of a year and a half ago who could walk and even run a little and and whom I could scoop up into my arms to hold. I miss it for him and to be honest I miss it for ME too. The thought that we could get some of that back was deeply moving for me.
The bottom line is that barring a true miracle Noah is not ever going to stand again or walk again. If we did very painful surgery on his feet and his knees and his hips he could die from the surgery. He would be in a great deal of pain and have to deal with aggressive casting. He would very certainly lose baseline functions from the stress of the surgeries. The casting for his hips wouldn't even be possible to do because of the drain tubes in his abdomen. Even if somehow we knew that the surgery would turn out OK and we could work around the lines and the logistics, it wouldn't be enough. Some of his joints are deteriorating so fast that he'd be back in trouble with them before he was done healing from trying to fix them. Even the most perfect possible surgical outcome from every surgery would not put him in the place where he could walk or stand.
I mean, I knew this. I really did. His wonderful orthopedic surgeon told us this a year ago and Noah is in much worse shape orthopedically . . . it shouldn't have been a surprise. I'm surprised at how much a 2 minute dream and 15 seconds of Noah kind of up on his toes was able to make me long and wish and hope. It was a perfect (or perfectly awful) storm of my hopes and the pain of seeing HIM believing that getting up a little for a few seconds meant he was going to walk again.
I spent a week grieving and pondering and praying about it all, and when his PT came again I decided to have a different talk with her. If everyone was sure he COULDN'T walk or stand, then it was time to talk about what he COULD do. He has gained a ton of ground in terms of upper body strength and endurance, so surely we could find something different for which to hope. My dream wasn't going to come true but Noah's spirit was hurting and I made up my mind to find a different dream for him.
He's doing amazingly well with his power chair. He can transfer from bed to chair and back again on his own using a transfer board, and he navigates that things like he was born in it. He has fantastic mobility from that standpoint, but a good hard look at his daily life showed me that if he couldn't walk, life would still be more open if he could get down to the ground and back up again.
It might sound like a silly goal - after all, I don't spend much time on the floor! He's just six, though, and if he could get down to the floor and back up again he could spread out big toys on the floor all around him to play. He could do floor puzzles. He could build a train track and play with trains. He can crawl just a little which means he could get into a pop-up or play house or ball pit or even move himself to his toy cupboard to choose his own toy instead of having to ask others to bring toys to him. If I wrap him in enough plastic wrap, he could even get into his beloved wading pool again.
We ended up with a new dream and a new plan. Children who are paralyzed from the waist down can learn to get down to the floor and back up again by using a series of graduated wooden steps. Each step is 4" shorter than the one above it. The steps aren't together like a stair case - they are each individual wooden blocks that nest for storage so that we could use as many or as few as needed based on how high Noah needed to go. With these steps beside his bed for example, Noah could turn and scoot to sit on the top step then use his upper body strength to scoot down the steps on his bottom. When it's time to go back up, he'd back up to the steps and scoot back up one step at a time. It is very challenging physically to do this but Noah has the advantage of not being paralyzed and he could probably learn to assist himself with his legs. It won't necessarily be easy for him to master this but he has every skill in place - and like we point out all of the time to him, he is GREAT at doing hard things. He checked out the P.T.'s set of stairs and was absolutely enthralled. He didn't get a chance to try them Tuesday but we'll start next week. A precious local woodworker is going to come to Noah's P.T. appt. next week so he can get a good look at the steps and will build Noah a set of his own.
Please pray for Noah as he tackles this new challenge. Pray that his heart rejoices and that he doesn't see this new dream as somehow less - that he is thrilled with what he can do rather than grieving what he can't do. Pray also that he learns this quickly and safely. He needs to get a bone scan in the near future as TPN can result in diminished bone density and we don't want him doing anything that could break a bone, so please pray that we get one quickly and that the results are good. We are also praying for a long stretch free from infections or other illnesses so that he is strong enough for a great summer. He's been awake for a couple extra hours most days lately and I want to just see that continue so that we can keep opening doors and creating adventures for him.
Blessings,
Kate
