Tuesday, July 20, 2010


Yesterday was our bi-yearly CCS appointment, where the doctors and specialists go over Queen Teen's case and decide what she needs, and doesn't need (in other words, what CCS will agree to pay for, and not). CCS is a phenomenal program and without it, Queen Teen wouldn't have such great medical care, but the clinics are a bit... long, or as Queen Teen likes to say, "Booooorrrrrrriiiiinnnnnnng." The last few appointments have been focused on QT's knees and how much she needs braces on her legs to support them, or she "won't be walking in a few years." The doctor and specialists push leg braces, and Rick and I try to explain that sticking her back in full, hip to ankle braces will destroy her mental health.

It's a delicate balance: how do we protect her emotional well-being while still supporting her physical needs?

After the last clinic, we decided to try leg braces if they would indeed protect her knees and keep her walking longer. But we only made it as far as the leg casting. Queen Teen almost kicked the guy making the mold in the head before she started crying and screaming. If she couldn't tolerate getting a cast made of her leg, there was no way she would put up with wearing leg braces. So then we got a second opinion from Dr. Rinsky at Stanford who told us putting leg braces on an ataxic child with a progressive disease is counter productive. Even with braces she probably won't be walking on her own in a few years. That ended the leg brace debate for us.

Rick and I prepared ourselves for our bi-annual lecture as we walked into the CCS clinic with Queen Teen, and right away the doctor asked if she was wearing leg braces. 

"No. And here's why..." I explained what had happened during the fitting and the man who had been making the mold, who was at the CCS clinic with us, told the doctor how QT had reacted. Then Rick and I told the doctor about QT's worsening ataxia and our conversation with Dr. Rinsky.

I said, "You can buy the braces if you want, but she won't wear them. We'll have to tie her down every single day to forcibly strap them on. I can't do that to her."

The doctor actually agreed. Everyone in the room, the doctor and the specialists and the CCS case manager nodded and smiled sympathetically, agreeing forcing Queen Teen to wear braces would be bad for her. What a relief. They were finally listening!

And then the doctor began talking about the future, how if her ataxia is worsening there are things we need to be prepared for, like conservatorship and group homes and power chairs and the fact she'll probably need us to care for her for the rest of her life. "I know this isn't something parents want to hear, but you need to think about it."

"We have been," I said. "We're already starting to plan."

Rick brought up toileting and maybe getting a bidet and the doctor agreed it could be helpful. Then the wheelchair guy checked out QT's chair and walker and ordered the repairs they both needed. QT smiled and laughed at the doctor, played with Rick and me, and only declared "I'm booooorrrrreeedddd" five times. Afterward, we went out to dinner to celebrate a successful clinic. No fighting this time, no stress, no feeling like every single person in the room was thinking I was a lousy parent.

They'd given up.

It suddenly hit me that the reason they weren't fighting anymore was because they had all reached the understanding that there wasn't anything more they could do to help Queen Teen. Instead, they would provide what was needed to make life a little easier for her. No more braces or therapies or other types of treatments. There weren't any. Instead they were resigned to watching her lose ground more and more at every future CCS clinic, while making sure she had a comfy wheelchair and a bidet.

And I realized, I've given up too. I am resigned to this fate, and I hate it.

Perhaps someday I'll reach acceptance, rather than resignation.


Cybele Baker said...

Oh honey you are NOT giving up you have finally realized you have already given your daughter a marvelous life, love and you do not need to do anymore except keep giving her what she already has..your unending love and support.
That is not giving up...that is realizing you all have all you need to live your lives.

Love you!

Nivloc said...
This comment has been removed by a blog administrator.
Confessions of a Closet Hoarder but you can call me Judy said...


I didn't get that you were giving up on her. Instead, what I got was that you advocated for a less stressful life for her. And less stressful means more happiness for everyone involved. You'll be able to enjoy the time you have with QT more deeply instead of being outside the moment with her wondering what you should be doing instead of enjoying your time as a family with your beautiful daughter.

Hang in there.

Rick said...

thanks everyone. We do try our best, and there is no manual written for our life or our daughters, so we improvise. lucky for us we both have a theater back ground.

Katy said...

Yick. What a feeling. I think that as parents we figure out a place somewhere between the two--or I hope we do as I'm still in the beginnign stages of this journey.

Once thought I did have--you did have many, many years of hope for Teen Queen. I'm not sure there's been a glimmer of hope for Charlie since day one. I just figure it out somehow and press on.

Anonymous said...

Is walking is the only valued outcome of medical care?

Functional, safe mobility = 'help' in my book.

Believe in yourself as a parent - whatever psychological word you use to describe your emotional navigation of parenting your unique and beautiful daughter.

Terena said...

Thank you everyone. I really appreciate your comments and support. This is a transition time, so it can be emotionally bumpy, but I do still have hope for the future for my girl and believe in her completely.

No way am I giving up on her, I'm just learning acceptance of the way things are, which can be hard, especially for a type-A, control nut like me.