Sunday, July 27, 2008


We finally got the authorization from CCS to begin Physical Therapy, although only six visits, which means PT will be more of a weekly consultation than real, in depth therapy. I get the feeling CCS believes PT is a waste of time. Fine. I'll take what they'll give us. Besides, Queen Teen needs daily exercise to make any difference and she's doing that on her own.

Her therapist is the same person who worked with her after her surgery last year and he's very knowledgeable. Queen Teen remembered him and eagerly showed him what she can do. "See," she said with a grin on her face and her arms held out wide, "I can stand up without holding on to anything."

"Very good," he replied while staring at her knees. He took some measurements of the curve of her each: 18 degrees in one and 5 degrees in the other. Queen Teen sighed. She hates being examined. With as many appointments as she's had over the years I don't blame her.

I told him about the exercises she and I have been doing and he said they were good, then he added rising up on her toes. He also encouraged swimming. "The key is to make it fun, or she'll stop doing it." He smiled. "But if she's already doing them on her own, I don't think you'll have to worry about that."

The PT agreed with the recommendation of the PT at the clinic that exercise could save her knees and that we shouldn't put her back in braces. The curve probably won't go away but if she keeps building her muscles and stretching the ligaments, it shouldn't get any worse. The last of my fears vanished. We have to give this a try.

Today she cautiously walked across the kitchen, swaying from side to side, arms flung wide for balance. I fought the urge to grab her to protect her from falling. Instead I gripped the counter and said, "Yay! That's so great!"

She reached the kitchen table and turned to look at me, beaming with pride. "See. I can do it. I can be stronger! I didn't fall down." Then she carefully cruised back to her walker by the kitchen door, her bare feet loudly slapping the linoleum.

Success! She felt the pride of hard work and how she can grow stronger, something that will stay with her as she tackles new challenges in her life. Everything is so hard for her, everything must feel so out of reach, but in that little walk from kitchen door to table, a distance of ten feet, she experienced the sensation of triumph.

If we try so hard to protect our children from pain and misfortune, they never learn how to pick themselves up from the floor and never understand that they can heal. If I put braces back on Queen Teen's legs, she will never know how it feels to take control of her own body and her own life. Without success, we diminish. Why bother? Nothing will work. No matter what I do, I'll never get any better.

Queen Teen is beginning to understand just how capable and strong she actually is.

Wednesday, July 23, 2008

A Visit to the Den of Chaos

My daughter,Queen Teen, used to be afraid to leave the house. Every trip to the grocery store left her trembling and sometimes nauseous. As she got older,however, her fear diminished until we could go for long walks without panic. She began to hate sitting around the house and wanted to go on trips. We took it slow, first with day trips only a couple of hours from home, then overnight. So now we're up to spending a few days away from home visiting friends. Our first stop: The Den of Chaos.

Maybe taking Queen Teen to a house affectionately known as the Den of Chaos sounds cruel, and I admit I was a bit nervous. Four children live there, aged ten and under, all rambunctious, loud, and playful. How was my mostly blind-deaf, wobbly, moody teen-aged daughter going to handle that much confusion and NOISE?

The first day everyone was a little shy, so the children mostly watched Sponge Bob while staring at each other. Boo-bug warmed up quickest and brought Queen Teen several treasures, including a stuffed bear and a Cinderella dress. Four year old Captain Adventure was fascinated with Queen Teen's walker and had to be reminded several times to leave it alone. Queen Teen and Eldest had met before but it took them a while to figure out how to play. Danger Mouse quietly watched Queen Teen and figured out that she needed to stand very close to Queen Teen to be heard. By day two, all the children were playing and coloring and chatting while exploring the house and showing off for each other. Queen Teen even conquered her fear and climbed the steep stairs to see their bedrooms and play. Dinners were hectic, bedtimes chaotic, the noise unending, and the laughter constant. Queen Teen took it all in with a regal smile. By day three when we had to leave, Queen Teen felt like a regular Denizen and declared, "This place is fun!" Eldest said that Queen Teen was "cool."

After a visit to the Den of Chaos, I think she's ready for an amusement park.

Wednesday, July 16, 2008

Time to Do My Exercises

My daughter has accepted the challenge to save her knees and in her usual single-minded and optimistic way has begun exercising her legs on her own. She found the red elastic strap we used when she was strengthening her legs after her surgery and started working out. I went into her bedroom two weeks ago and found her on the floor with the strap wrapped around her leg. She was trying to pull it herself to create resistance, but instead she kept pulling herself off balance and falling over.

"What are you doing?" I asked.

"Getting strong," she replied as she adjusted the strap around her ankle.

"Can I help?"

"Yes." She unwrapped the strap and handed it up to me. "I have to make my knees stronger so I can walk better."

"Let's do it, then."

She grinned and lay on her tummy. I put her foot through the strap and held the back of her knee securely to keep it from flopping sideways. "Ready?"

"Ready," she said, then pulled her foot toward her while I held the other end of the strap, keeping it tense. She did twenty repetitions on each leg, then she sat on the edge of her bed and we did the same thing, only this time she lifted her foot upwards. I could feel her muscles and tendons working under my hands as she held her foot out, the tension creating a strain and forcing them to engage. She grinned.

This is why I can't just put braces on her legs. Yes, we may be taking a risk that no amount of exercise will improve things and her knees will deteriorate to the point where they won't be able to support her body weight. But this is obviously a risk my daughter is willing to take. I support her strength and determination. She isn't giving up, so why should I.

Every afternoon she finds the red strap and calls to me. "Time to do my exercises."

Friday, July 11, 2008

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.

Tuesday, July 8, 2008

How do you know what choice to make?

My daughter's CCS (California Children's Services) bi-yearly review was a couple of weeks ago and since then I've been trying to figure out the best choice to make for my daughter, while at the same time realizing I don't have a clue what that choice should be.

At the clinic, the doctor who examined her looked at her knees, which bend the wrong way, and became alarmed. I tried to laugh it off. "Yeah, I know. I try not to look."

"I want you to look," he said without smiling. He then cautioned me that my daughter's knees are in bad shape and she should be wearing braces to support them. "If they continue to bow back, which they will as she gets heavier, she will reach the point where she won't be able to walk at all because they won't support her weight."

I said, "We took the braces off after her surgery because she was complaining of knee pain and the surgeon suggested giving her legs a chance to strengthen. Since we took the braces off, she hasn't complained of pain at all. If her knees are so bad, why isn't she in pain?"

"I don't know," he said. "But in time, she will be."

I looked around the room where seven people, therapists and consultants, sat listening. One of the physical therapists asked about just a knee brace, but the brace expert said that wouldn't help. She needs full, foot to hip, braces on both legs to support her knees. I looked at him, but he wouldn't make eye contact, and then I realized he was angry with me. He used to be friendly and has worked with my daughter since she was three. Now the frustration in his voice told me he thought I had made a bad decision removing the braces.

By the end of the meeting, the room was divided; physical therapists supporting my decision to not use braces right now, and the doctor and CCS staff urging me to consider braces again. The doctor said, "If you want to try therapy for a while, go ahead, but we need to talk about this again in six months." Great. We've got six months to save my daughter's knees.

This isn't the first time I've had to make a choice when the "experts" disagreed. Several years ago she was checked for sleep apnea, which she has. The sleep expert recommended we remove her tonsils to open up the air passage. The Eye, Ear and Nose specialist said her tonsils weren't the problem. Her neurologist agreed, saying it had more to do with her neurological issues. Then another neurologist said it WAS her tonsils. In the end, I decided not to put her through surgery when I wasn't sure it would help. The sleep expert angrily told me I was making a terrible mistake.

Last year, she had surgery on her feet because the bones in them had collapsed and she was walking on her novicular bone. She could hardly walk, even with her walker. One doctor was against the surgery because she might never regain muscle mass after sitting for so long because of her hypotonia. Another doctor thought if we didn't do anything at all, she wouldn't walk regardless. Her feet couldn't' support her weight. She was complaining of pain. That time I chose surgery, risking that she wouldn't recover fully because she was already losing mobility. The risk seemed worth it, and happily, she recovered very well. Except for her knees.

How do you know what choice to make? Who do you ask when the doctors disagree? How long is too long to "wait and see?" Am I hurting my daughter by not putting leg braces back on? Or will I hurt her more if I do? How do I tell my thirteen year old daughter who just recovered from surgery so she could walk, sorry, you're going to have to wear braces again?

Tuesday, July 1, 2008

Beginning to Let Go

The smoke in the Ukiah Valley reached "hazardous" levels, so I took my daughter to stay with her dad for a while. He lives in Davis, and yes, it was smokey there too, but nothing like Ukiah. You can see across the street clearly in Davis while in Ukiah, the view of my neighbors is dimmed by beige, fog-like smoke.

Anytime she leaves to visit her dad or anyone else for a few days, I worry. I know it's ridiculous, but I honestly believe that no one can care for her as well as I do. No one knows her, understands her, or supports her like me. When she's trying to express an idea and can't form the right words, I know intuitively what she means and can tell other's what she's saying. It used to be a great thing when she was younger, but now, I'm beginning to think this telepathy we share is no longer good for either of us. I mean, she wants to be more independent and my stepping in to help her communicate or make decisions might be hampering that. However, she does legitimately need help much of the time, and I see part of my role as her intervener. I help bring the world into focus for her, filling in the gaps of her vision and hearing by explaining what is going on around her. But how much intervention is too much?

I think I am beginning to let go, because this time when she visited her dad, I felt calm. Well, calmer than in the past. I didn't feel the need to grab the phone to "check on her." Didn't wonder every hour what they were all doing. Was she eating? Brushing her teeth? Did her dad remember her medication? Was she able to tell him what she wants? It helped that I was competing in the 24 hour play festival this past weekend so was too busy much of the time to worry about her. But when the competition was done, I didn't call her dad to see how things were going.

She is growing up, pushing me away, trying out her own words and ideas, without me in the middle, and I think I'm finally beginning to let her. Beginning. It will be a while before I completely let go. But really, does any parent?