Wednesday, May 18, 2011

Out of the mouths of babes

It's truly amazing, the things that come out of Hannah's mouth.  On the one hand, I am so grateful we have created a comfortable enough space for her to share her thoughts/fears/questions/anxieties.  On the other hand, it is hard to hear her say some of the things she says and not burst into tears.  I'm so in awe of her maturity and sensitivity, and hopeful it will help her navigate what will surely be harder times ahead, as she faces some of the challenges of being a person with a disability in our culture.

I'm not sure what precipitated this most recent round of "deep talks with Hannah," but my guess is that it might have something to do with our experience at the pool the other day.  We were walking into the pool area and making our way over to the shallow "wading pool" with Isabelle and Hannah and her PT.  In the pool already were 3 very curious girls, probably ranging in age from around 6-10.  They were openly staring at Hannah as she walked to the edge of the pool with her walker, watching closely as I then helped her into the water.

I "took the plunge" so to speak and pasted on a smile, looked right at the girls, and said, "Hi, this is Hannah and her sister, Isabelle.  Are you checking out Hannah's walker?"  (They nodded).  "She uses it to get around because her legs move a little differently.  Have you guys ever seen anyone else use a walker before?"  (They shook their heads.) "Well, it's pretty cool because it helps Hannah get to wherever she wants to go."  And then I turned back to Hannah and said, "Right, Bug?" and then helped her get in the water and over to the other side of the pool.

That afternoon and every day since then, Hannah has repeatedly asked me things like, "Are you glad I have a walker, Mommy?" And "Do you still love me even though I have a walker?"  OK, take knife, insert into heart.  Pull out, and repeat.

She's asked, "How did you find out I needed a walker?" And "What did you do when you found out I needed one?" And "Will you watch me walk in my walker so you can see how I walk?"

So clearly we've moved from the "I have a walker to get around and that's okay," stage that we were in a few months ago, to the "I have a walker and am not so sure it's okay," stage.

She has also said, "I'm different from the rest of you guys-you don't have a walker, and Daddy doesn't have a walker, and Sam doesn't have a walker, and Isabelle doesn't have a walker."  And, "I know it helps me to get around, but it frustrates me that I need it and no one else does."  And, "But all the things I am doing with Kim (PT), and at the Rehab Gym (other PT) and stretching, and everything else are helping me to get stronger so I won't need one, right?"

She's even gone so far as to say, when I asked her what made her think about these things so much right now, "I just feel like it's my fault that I have to use a walker."

OK, so here's where I am launched from mom turned expert in physical therapy into mom turned expert in child psychology.  I would love to know how others have handled these kinds of questions with their kids, but here are some of my thoughts these days, informed most recently by Kathie Snow's keynote address at a conference I attended:
  • I do not want Hannah to think she is broken, that this is her fault, that she did something wrong and that she needs to be fixed.  
  • I want Hannah to know that she is like a puzzle made up of many, many pieces.  Her walker and her disability are one tiny piece of who she is and there are so many other pieces to her, pieces that have so much in common with other kids and the other people in our family.
  •  I'm no longer going to say that her legs "don't work as well as other people's." Instead, we say "they work differently."
  • I'm going to be careful not to make Hannah think that she goes to therapy to get fixed and that if she works hard enough, she will be fixed/cured/no longer have a disability.  Instead, the goal is to give her all of the tools she needs-a walker, a ramp, extra rails on our staircase, physical therapy-so that she can do the best she is able to do with the beautiful body she has.
  • I want to focus on all of the things Hannah CAN do, not those she can't.
  • I want her to be included as much as possible in everything at school, at home, and in our community.  If that means doing it differently, I want to explore ways to do that.
I'm sure I have more to add to this list, and I also need to figure out how to incorporate these important concepts into our conversation about her surgery, which we have not yet had.

Oy.  It's enough to bring on a serious case of agita.

Wednesday, May 11, 2011


My head is spinning, thinking of all of the stuff we need to take care of before we head down to NY for Hannah's surgery.

I'm gathering lots of things: things to keep Hannah entertained and engaged while she's in the hospital and rehab, things to keep Isabelle and Sam out of trouble while they're at Grammie and Papa's, things to keep B and I sane while we spend long hours each day at H's bedside.

I'm also thinking a lot about how best to prepare the girls for the upcoming surgery and extended separation.  They have never been apart for more than a few hours.  I have no idea what that will be like for them.  We're in touch with the child life specialists at both the hospital and the rehab facility, and they've given us some suggestions of activities we can do with the girls to help them stay connected even while they're apart.  We have some books, a shared journal activity, Bare Heart buddies, and a few other ideas we will try. 

The child life folks have told us it's best not to tell the girls about the surgery until a few days before.  This has been hard for me, but it makes sense.  While I might need months to process, the girls still are not great about the concept of time and the more time goes by for them to "stew" about something, the more anxious they get, especially Hannah.  So I can see why a few days at most is about right.  We plan to head down to NY a few days before the surgery so we're thinking we'll talk to the girls about it a day or so before we leave our house.  So for now, mums the word and in the meantime I'm trying to figure out how we're going to have this conversation and what special thing(s) we can do with the girls before we leave for NY.

I want to document how Hannah is moving around now, so we can look back and see the changes post-SDR.  I find myself looking at her often, wondering what her body will be like after.  We've been so focused on making sure this is the right decision, being super conservative about our expectations, steeling ourselves for a long and tough couple of months post-surgery, that I haven't spent a lot of time dreaming about the possibilities.  I see how much Hannah is doing now, how far she's come, how much stronger she's gotten, how independent and motivated she is, and I wonder how this will change when she is not fighting against all of that high tone.  A little voice inside of me says it could be big, really big for her, and she will do amazing things.  But I won't listen too closely to that voice just yet because I don't want to have unreasonable expectations.  I'm sticking with my story for now: "This will greatly improve Hannah's quality of life, it will make her movements smoother and easier for her, and reduce the likelihood of many orthopedic surgeries in the future."  These are all good enough reasons to do this surgery. 

And even if we didn't do the surgery, Hannah will have a productive and fulfilling life.  She does not need this to be whole. She is already more than whole.

But in the words of the neurosurgeon, "this could really be a home run for her."

Batter up!