Resignation

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.

When life and school crash together in a painful sort of way

We got some bad news at Stanford last week about Queen Teen's prognosis. Her hearing has deteriorated to the point where even her hearing aids aren't much help, and the audiograms over the past two years show a steady decline overall. After her audiology appointment we saw the orthopedist to take a look at her knees and he ruled against bracing. I wish I could say it was because her knees are fine and she doesn't need braces, but the reality is that bracing won't help so why put her through the trauma? Her ataxia has worsened, and odds are she won't be walking in two years anyway, so there's no point in forcing her to wear braces. She left the appointment happy that the doctor agreed she didn't need to wear braces ("I told you!"). She didn't hear the whole conversation. I swallowed my tears, put on a smile, drove us the three hours home, then went out on the back deck with a big bottle of wine and drank more than half in one sitting. Sometimes you just have to get drunk.

There was no time to grieve. I had school and papers and midterms and a book to publish, meetings with service providers and Queen Teen's teacher. By Friday I was still sad, but ready for class, and while I drove to San Francisco I thought about Queen Teen's need for alternative communication and probably a power chair. I needed to lift weights and learn ASL even faster than I'd anticipated. It would be okay. We'd get through it somehow, just the way we always do: with love, faith in each other, and a lot of gallows humor.

The weekend's classes were focused on working with people with multiple disabilities; people who use canes and walkers and wheelchairs. My teacher began discussing the process that families go through when a child's disability requires a power chair. It's hard to watch your child go from walking to needing a chair. Parents grieve, and children grieve for the freedom they lost. There's also a lot of anger...

Are you frickin kidding me? This week, of all weeks, is the week we discuss children with degenerative conditions and how they need to be able to use a chair? I wanted to spring up and run from the room, but I didn't want to create a spectacle. Instead I focused on breathing, trying not to cry, trying not to show how unbelievably impossible this situation was. Was this some kind of cosmic joke? Was the universe or God or whoever you want to believe in out to get me? The reason my whole world was unraveling was the class topic? Then I felt the edge of hysteria, like I would start laughing so loudly I would scare everyone, right before falling on the floor and disappearing. It was just too surreal and painfully ridiculous.

I didn't fall apart. I got through the rest of the day and made it back to the security of my home in one piece. But I'm dreading next week's class. Why? Because the topic is Deaf-Blindness.

Yeah, I kind of already know that one too.

Gotcha!

On Saturday night, I was beaten up by a "gotcha," a particularly evil, knock your breath out, leave you weeping kind of "gotcha." Parents of Special Needs children know exactly what I'm talking about. A gotcha is when your emotions find a chink in your armor and you become incapable of defending yourself against the grief and rage that you normally keep locked up far away from your daily life.

I was eating a bowl of soup at my friend's house when their daughter came home with her group of friends, all 13-14 year old girls. They bounded up the stairs, giggling and joking, talking excitedly about Dickens Fair and other kids at school, texting one another while conversing (which I thought was particularly interesting since they were standing right next to each other), and appearing so happy it made me smile. When suddenly, I felt my heart constrict and my eyes fill with tears. They're the same age as Queen Teen.

Shit! I pushed the thought aside, focused on my soup and forced myself to keep eating, even though it was becoming impossible to swallow. When the girls took the dog out for a walk, my friend asked, "Are you alright?" That did it. I burst into a deep, wracking sob I couldn't control. She sat beside me and wrapped her arms around my shoulders. "Oh dear, what's wrong?"

Gasping for air, I said, "They're the same age as Queen Teen."

The girls were so happy with their friends, cell phones, and social life. They could sing and dance and perform at Dickens fair, were all healthy and beautiful, and I longed for that kind of joy for my daughter. She is so alone and cut-off from the simple pleasures of good friends and giggling conversation.

I managed to get myself together before the girls returned, but I was tearful the rest of the night. My friends were so kind and understanding and I am forever grateful to have them in my life. The next day I still felt wounded and although I had a lovely time at Dickens with my friends, the emotional bruises from that "gotcha" lingered. I wanted my daughter to share the fair with me, maybe even perform like I used to when she was an infant. She could be a part of that group of girls in a pretty costume, singing Christmas songs and joking about boys.

Three days later, I still catch myself fighting tears. It can take a while to recover after a "gotcha" attack. It seems that no matter how strong or capable I am, I have no immunity to those moments when I am reminded of all that my daughter, and we her parents, have lost.

Still Recovering from our Make A Wish Trip

"The Tightrope Walker" by Jean-Louis Forain

It's been two weeks since our Make A Wish adventure and Queen Teen is still smiling from the joy and excitement of meeting Laurie Berkner. She and I put the photos in the album Make A Wish gave her and we talked about the trip. She giggled as she looked at the pictures of Laurie, especially the one I took during the concert when Laurie had a "pig on her head."

I wasn't prepared for the emotional hurricane the trip created two days after our return, though. The exhaustion from traveling and caring for Queen Teen alone in a hotel for four days hit me hard, followed immediately by the blues so deep I couldn't stop crying. Make A Wish is a marvelous gift, but I suddenly realized I didn't want it.

For over ten years I've understood that Queen Teen's yet-to-be-named condition is degenerative, but I've avoided the idea that it could kill her. We focus on the here and now. The future is unknown because her condition is unknown. Some people say not knowing the outcome is harder, but for me, I like not knowing because that leaves the future open. Anything is possible, including Queen Teen's degeneration plateauing with no further damage to her cerebellum. Her neurologist explained that could happen and he's admitted that he really doesn't know what the degeneration will mean in the long run. Fine, then lets just deal with today and live with joy and determination. I refuse to mourn my child while she's standing right next to me.

Qualifying for Make A Wish shattered my healthy denial, especially when I saw the look on people's faces when I told them Queen Teen's wish was being granted. Everyone looked at me with a frozen, startled smile as I explained her Make A Wish dream. They wanted to be happy for us, but at the same time I could see the questions in their eyes. Is Queen Teen dying? I had no idea! Why didn't you tell me?

Now I'm having to tell myself the same thing I wanted to tell them. No, Queen Teen isn't dying, but she is at risk. We don't know what will happen. So please, can we just focus on the FUN part of this trip?

I wonder how many other parents have the same reaction I did about Make A Wish? The gift is incredible and life-affirming, while at the same time frightening. Perhaps Make A Wish should include that in the info packets they give to the families before the trip. Now don't be surprised if you feel overwhelming grief at the same time you are excited for your child.

I'm feeling more centered and calmer now, but it took several days and a call to my therapist. I see him whenever I feel like I've lost my balance on this tightrope called raising a special needs child. Sometimes we all need someone to steady us so we can move forward, one cautious step at a time.

No matter how well you're coping, you still have bad days.

Today is one of those bad days. I go along for weeks, feeling competent, hopeful, cheerful and organized. I can juggle all 12 balls with an eye on the horizon and not skip a beat. Then, suddenly, a weird feeling of exhaustion will creep up from my toes until my hands go numb and I drop every single ball on the floor where they bounce around crazily until rolling out of sight. I'm stunned, overwhelmed with emotion and angst. To make it worse, I burst into tears. It feels just like when I first learned something was "wrong" with my daughter. That moment presses in on me until my heart feels too full to beat. I thought I was coping so well, I wail. What the hell is wrong with me?

Relax. Nothings wrong. You're just having a Blue Day. They happen now and then, even to the most capable and intelligent parents alive. Anything can trigger it; new shoes already being worn down at the toes, running out of hearing aid batteries, a form you forgot, a phone call from the Regional Center Case Manager. Even something simple, like more weeds in the garden, bring on the tears.

All parents have bad days, but the parents of special needs children get an extra helping of the blues. The trick is to be kind to yourself. Don't suppress your fears or grief, but don't fixate on them either. Take a deep breath, tell yourself you're okay, then do something nice for yourself. In time, you'll find all those balls you dropped and will begin to juggle again, adding one ball at a time. It might take an hour, or a week, but you will be okay.

Today is my bad day. I heard the words "trying not to give up" and wammo, I was on the floor gasping for breath (not really. Metaphorically). I used to freak out when I had a bad day and wonder if I needed more therapy or maybe medication, but over time I understood that having a bad is a normal part of being the mother of a child with disabilities. You can't be perfect and together at all times of day and night, no matter how much you'd like to. I've learned to let myself play The Sims, eat chocolate if I wish, watch a Johnny Depp dvd, take myself for a walk, or dance in the living room while listening to Fat Boy Slim. If the blues get really bad, I call a friend. That was an important step for me. I was attached to the idea that I must be strong ALL THE TIME because if I didn't keep a smile on my face everyone else would fall apart. Um... no, Terena. You may as well insist you learn to fly without an airplane as keep a smile on your face 100% of the time. Besides, you'll creep everyone out (doesn't she ever stop smiling?)

So, that being said, I'm off to crank up the music really loud and "dance away the heart-ache" as the song says. Tomorrow will more than likely be less blue.