There was a time that I couldn’t look at pictures like this.
We were living in Arizona when this picture was taken. Julianna was two and Alex was four. Julianna is sitting up straight, and there is no adult hovering or lending a steadying hand.
Today, I can look at these pictures, and it’s a good thing. Every mother should be able to look back and see her babies when they were actually babies.
The most obvious manifestation of Julianna’s CMT is weakness. These photographs show how CMT has steadily and cruelly taken Julianna’s physical strength. It’s painful to see what once was, but I am comforted by the knowledge that CMT has not been able to touch Julianna’s spirit. The pictures prove it.
Ten months old — and in a regular, non-medical high chair.
Fifteen months, in her first pair of orthotics (left) and in a physical therapy session (right — even then, she liked the bling.) We still didn’t have a diagnosis, and hoped that she was simply a late walker. I spent a lot of time thinking/praying “Please let this be an orthopedic issue (i.e., fixable), not a neurological one.”
At around eighteen months, she took her first steps with a walker. We made her do “laps” up and down this hall and bribed her with gummy bears. It felt like a miracle, and I longed to see more gains.
She’s almost two in this picture, and was at the height of her physical strength. Here, she is able to stand easily with one-hand support. I kept waiting for the day that she could stand unassisted (and maybe even walk down the aisle by herself) but it never came. She made a beautiful flower girl anyway.
She is two in these pictures. She plateaued in her physical progress, but was able to get out and do “normal” kid things. One of her favorite memories of St. Louis (on a visit to Homie) is this merry-go-round. She always chose the elephant. The picture with Alex is during our first month in Washington state. She is almost three, and we were able to get her out in just an umbrella stroller.
Left: First day of school! Preschool for Julianna, kindergarten for Alex. J had just turned three, and was able to walk short distances (i.e., 20 feet or so) with her walker. She usually had a helmet (right) on while walking, because she wasn’t very steady. She went to school only a few months, and it was then that we started noticing a decline. It got harder and harder to coax her to walk, but we kept on her.
Julianna never made it back to school after the winter holidays that year. In January 2014, our world changed with a runny nose. She would be hospitalized three times that year for respiratory failure. The January admission was the worst one. She was in for four weeks and lost a lot of strength. She was never able to use her walker again after she got out. Here, she’s still in the hospital, but is on the mend and doing physical therapy. At that point, I was happy that she survived: that she was still able to stand was bonus.
Summer 2014 — almost four. Her walker went into the garage, and J’s physical therapist let us borrow one with torso support. She wasn’t able to cover much ground with it, but it was better than nothing. She was having difficulty standing with assistance at this point.
Also that summer, we got a stander. This let Julianna bear some weight while supported. She is using it to paint (right). When she needed a break, she could recline. She didn’t love it, but the large “desk” was a good surface for playing and projects.
This was also the summer that scoliosis came into the picture. We tried a few different braces, but she hated them. (We can’t find any pictures where she looks like her happy self in a brace — this is the best one.) Worse still, they pressed on her abdomen and made her throw up, which led to aspiration. This was probably the hardest time for us. She was losing the ability to even sit up (right).
A bright spot amidst all the decline was her power wheelchair. It gave her freedom, and she liked to go FAST! (She would always “forget” to switch back to the slower indoor speed when coming from outside…) This is from January 2015. She drove into her princess room for the first time during her Make-A-Wish party. I am so grateful that she was able to do this on her own. Soon after this picture, her worsening scoliosis and arm strength made it impossible for her to use her power wheelchair. It sat in our dining room for over a year. It was a painful reminder, but we didn’t want to give it away. I also didn’t know how Julianna would feel. Last month, we asked, and her answer was simple: “Yes. Give it away.” No hesitation, no self-pity — it’s her way.
And now, we rely on the ubiquitous TumbleForm chair. It’s the only thing that is able to keep Julianna upright. She needs her BiPAP and suction with her at all times, which makes movement (even from room to room) difficult. She gets around on a custom made cart from Grandpa.
And speaking of that cart:
M: Did you know that if I could snap my fingers and take your CMT for you, I’d do it? Then I would have CMT and you wouldn’t. That would be so great.
J: But then you wouldn’t be able to walk.
M: I know. But it’d be worth it.
J: Mom, I don’t think that’s a good idea.
M: Why not?
J: Because you’d break the chair cart. You’re really heavy.
M: I wouldn’t have to use that, silly. I’d have something else.
J: Like a wheelchair?
J – Oh! Laughs silently