Just Wait and See

A blog about hope, despite the disabilities.

Tooth Fairy

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I don’t care who you are, when your daughter loses her first baby tooth, it’s an event. Catherine’s lower left tooth had been wobbling in her mouth for a couple of weeks. But today, we finally determined it was loose enough to pull without much pain – for Catherine, or us.

“Brian, it’s ready to pull, I think,” I said this morning after I fed Catherine. Honestly, I was a little squeemish about the whole thing. I didn’t want to cause her any pain, and I remembered a few teeth when I was little hurting a bit more than you’d like. “Why don’t you pull it?” Brian casually asked. “It’s a Daddy’s job,” I concluded, matter of factly. And he must have agreed because next thing I knew, Brian had kneeled down by Catherine and had his hand in her mouth trying to get a grip on the teeny tiny tooth with a paper towel.

Poised with the camera, I recognized her little grimace and laughed just a bit recognizing the right of passage this event marked. And just like every kid who loses a tooth, she put her tongue in the hole immediately. That was my gift from the tooth fairy because it meant she knew what had happened. I wonder what the tooth fairy will bring to Catherine tonight. Today she brought me hope.

Inspecting the tooth.

Inspecting the tooth.

The grimace - ouch!

The grimace - ouch!

Checking it out with my tongue.

Checking it out with my tongue.

Festivals and Stares

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We recently went to an art and music festival in Annapolis. I have a hunch Catherine responds differently to live music, so I wanted to expose her to whatever the “music” part of the festival had to offer. Turns out, it was a quartet playing at noon under a tent on a perfectly crisp fall day.

One of Catherine’s caregivers joined us because Brian was out of town alone for the first time without the family since Catherine was born. Needless to say, he deserved that respite! We perched in the middle of the venue on the grass with a blanket where Catherine could get perfect stereo sound from the giant speakers. And the music began in an upbeat, jazzy, mellow sort of way.

Sarah was pushing up against nap time. As a result, she was a bit out of her skin and wanted to run all over the place – mostly toward the brick steps that made me a little nervous. I lost track of the number of times I had to get up and run after her, but frankly it was fun, and made me smile, so I didn’t care.

In time, though we reached the end of her rope and got ready to leave. As I picked Catherine up, I realized she wanted to stand. She’s the perfect height right now so her hips fit right between my knees which enables me to give her some extra support. We started dancing to the  music and in my mind, we evaporated into the air.

But then I noticed people staring. And as I looked back at them, I realized they quickly looked away. Why? Didn’t they realize they were witnessing a miracle? Couldn’t they see the hope that stood between my legs? Was it too hard to see the pure light radiating from Catherine – or at least from my smile – and realize this was something happy? Something worthy of stares. Something that makes a random observer fill with joy like when you see a toddler trying to catch bubbles.

Go ahead strangers. Stare. And smile at us when you do, please. It’ll be alright.

Amazing People

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Driving home last night, I was talking with one of Catherine’s aids for school. You can imagine this has been a tough few weeks as we still do not have things sorted out for her placement. We’ve hired private aids to go to school with her at Delrey, where we’re footing the bill. So, as I’m talking with her aid, she begins to tell me about some ideas she’s had.

“You know, I was thinking about how she’s not been using the switches much this week, and I wonder if it’s a reward thing. She used them so much for the lollipop, but I don’t want her to only work for a lollipop. So, I’ve been trying to think of other ideas for rewards for her. I talked with [her old teacher from Maryland School for the Blind] who told me she likes wind in her face. I’m thinking maybe I could get a little fan and blow it when she touches the switch. I also raided the closet to make textured items to represent each kid in Catherine’s class until you can get their names done in Braille. I want her to be able to participate more and choose who she gets to say, ‘Hi,’ to each morning in circle.”

Wow! I nearly had to pull over I was so moved by her genuine attempt to connect with Catherine and draw Catherine into a larger circle of participation. She’s never been a teacher in a classroom. She’s getting her Master’s in Early Childhood Special Education, true. But she doesn’t have “20 years of expertise” from which to draw. She’s just thinking and caring and trying to apply the educational theories she’s learning at Loyola.

I’ll take it!

I’ll take any person like that with no experience vs. a history of experience that seems only to know “what works best” – yet doesn’t – any chance I get. And that got me thinking about the amazing people in Catherine’s life who genuinely try to help because they genuinely care. While we’ve been fighting this battle with the county, I’ve grown very discouraged. I’ve had to look deliberately for places to hope. I’ve had to list things actively that comfort me, so I can wrap up in those thoughts and prepare to battle once more. The “Amazing People” are usually on that list. They provide energy to me to keep going. They share ideas when I think we’re at the end. They point out things they’ve seen when I doubt what I’m seeing. They give me information both on and off the record that helps us make good choices. They stand tall in my mind and battle the people I call the “hope killers.”

I’ve tried to turn to God in this battle to make sure we’re on the right path. I’ve noticed a pattern. A hope killer gets in the way and causes me to doubt our mission. I get angry, scared and tired. I remember God is bigger than the hope killers and I ask him for help. Soon after, I get to talk to one of the Amazing People. And now that I recognize this pattern, I realize that God really is with us. He wouldn’t send the Amazing People if not. I’d just run into hope killers over and over again without any respite from Amazing People. So, as we work to get Catherine what she needs educationally, I watch for the Amazing People to emerge. They’re usually the quiet ones. They’re usually the ones that care deeply and think it through and offer something new, and helpful and hopeful. As I told Catherine’s aid last night, they are our little angels guiding the way.

God bless the Amazing People. And may all you hope killers please go away.

If Everybody Had a Notion

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Catherine got to surf! Yep. I haven’t even ever tried surfing. I wimped out in Tamarindo, Costa Rica for some stupid reason, but my five-and-a-half year old (cuz that’s how she’d say it) got to surf when we were on vacation a couple of weeks ago in Wrightsville Beach, NC.

We had sent the guys fishing, so my sister-in-law and I were setting up the compound on our own. Catherine was hanging out in this super-cool beach wheelchair that the Wrightsville Beach Parks and Rec loans for free. A guy who was obviously a surf instructor watching his class in the water came over and asked me, “Have you ever thought about getting her on a board?” I have to confess, I was a little taken aback.

Frankly, I told him, I’d just read an article about surfing and kids with special needs, so I had thought about it briefly, but determined she  probably couldn’t do it since she didn’t have much head control. Bummer. He saw it differently.

His name was Jack, and he runs Indo Jax Surf School in Wrightsville Beach. He runs several “outreach camps” during the summer. He’d done one for kids with cerebral palsy already. He’d done one for folks with visual impairments. He was going to be doing one that week for kids with autism in conjunction with the national program called Surfers Healing, and he wondered if we’d like to try to get her on a board. “Think about it,” he said. “You have to be comfortable with it, but we never say no if you want to try it” and he proceeded to tell me how they’d do it.

The kids with Autism were going to be there on Thursday, and I met Jack on Tuesday. As soon as Brian got back from fishing, I told him of the opportunity. We committed to checking it out on Thursday.

We loaded up Catherine and Sarah in a wagon to walk about 1.5 miles down the beach to the event. The weather looked threatening, but hope kept us walking toward the clouds and toward the crowd. We watched these huge surf instructors pop the kids up on boards like they were little beans. Mostly what you could see were the smiles. The kids were exstatic. The instructors possibly moreso. And the parents, friends and passersby on shore were cheering with more enthusiasm than any professional sports fans. They had more heart and it was way more spectacular to see these kids ride in on the waves.

Jack said we’d probably get to go in the afternoon after the camp participants got to go. Understanding of course, we opted to head back to the house thinking we might beat the rain, which didn’t happen. Soaked, we snuggled in for lunch and naps and prepared for the afternoon waiting to surf.

When we got back to the event site, we learned they’d had a rain delay so we’d have to wait longer. No worries. We played in the sand and watched the kids and parents having a wonderful time. Every now and then, Jack checked in to say, “Just a little while longer.” Eventually, it was Catherine’s turn.

She donned a rash guard and life vest and guys carried her out to the ocean and Brian and I stood with Sarah taking photos and video and marveling in the attempt. We had no idea what to expect. Jack got on the board with her. He laid on his belly and propped Catherine against his shoulder. One guy watched the waves and other guys were on either side of the board. Eventually, after waiting for the right wave, they rode into shore, as Brian and I recorded it as best as we could. Catherine, however started coughing and struggling to breathe. And she couldn’t relax. Uh oh, I thought. Did we do the right thing?

I got a little nervous as did Brian, I think. We took her from Jack and they went to surf with another kid while we tried to calm Catherine and help her breathe better. Catherine has stridor now, which makes it hard for her to breathe sometimes due to inflammation in her throat. At it’s worst, it progresses to the point where she needs oxygen. We didn’t have any oxygen.

I just held her in the surf and unzipped her pfd to open her chest a bit more. I walked in with her and rocked her and sang to her to help her relax. Eventually, she settled down enough for me to look at her wet face with her hair tossled in ringlets. And she smiled. It’s the first time I actually thought Catherine smiled as a result of something she did, so I interpreted it that she wanted to go again. Indeed.

We called over to Jack and the other guys who ran over to see that she was OK. They eagerly took her for a second run and she rode in even better the next time. We scooped her up and danced and congratulated her and called her “surfer chick” the rest of the day.

Needless to say, we were thrilled. The surf instructors were pretty psyched, too. They were obviously exhausted from the day, yet they took time to make a little girl smile. They also bathed my soul in light and warmth, and I told them that they didn’t just help the kids that day, they helped the parents. It’s hard to have a kid who isn’t included by peers and family. Getting to see her surf makes all that pain go away for a bit, and that keeps the hope alive.

Hang Ten, Catherine! Hang Ten.

Waiting for the big one.

Waiting for the big one.

To see photos of the Surfers Healing event, including shots of Catherine, on the IndoJax website, click here.

Special Education

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We just spent 4.5  hours in a special education mediation meeting. I can’t write about the details now, but let me just say that if I had all the money in the world, I would make it my singular mission to change the system in our country. Or at least in Anne Arundel County to get started.

I’ve written about Delrey School before, I think, but it’s worth it to mention again that in the world of special education for severely disabled kids with cerebral palsy, they are top shelf. They are consummate professionals who genuinely care about these kids – and not just the ones paying tuition for their school.  This is what I wrote to the team that helped us in the mediation:

You are each rays of hope in a system that is so broken it is disheartening. You each have a joy and radiance that grows from your souls and touches these kids and draws them out. You relentlessly find the one tiny glimmer of light shining from a kid and you work tirelessly to open that hole and let the light pour out so the world can see. These are perfect souls trapped in broken bodies, and you help their souls shine. It is refreshing to know that one candle can erase darkness. You are each candles. Your school shines so brightly with your candles and the light you open to the world in your students that it scares places who can’t possibly shine that brightly – much like it would hurt your eyes to look at the sun. Keep shining. On the days it’s tough – on the days you have doubt – know deep in your soul, at the very pit of who you are and what you do in the world, that you are brilliant. And each kid that gets to come through the halls of Delrey for even a moment is blessed and changed forever. Shine on, Delrey. Shine on.

Rest

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I’ve been watching Sarah play lately with wild abandon. At 18 months, she doesn’t consider the consequences of her actions very much. Occasionally, she looks over her shoulder to see if something is going to be OK with Brian or me, but mostly, she just runs and twirls and climbs and laughs and builds and knocks down and dances and hugs. She’s on the go from the minute she wakes up smiling to the minute she finally settles down for sleep. So, how can I possibly title this post, “Rest”?

Because she does. In micro-bursts. She can be running full speed through the living room, drop to her knees and play with some blocks for a minute and then put her head down on the floor in a quick child’s pose with her bum in the air. If she really needs to recharge, she slides her bum all the way to the floor and puts her arms beside her stretched fully down toward her knees. She doesn’t close her eyes. She just lets her body rest. Usually, it’s less than a minute, certainly never more than two, and then she’s up again, oftentimes heading for a chair she can climb just to scoot back into the cushions and smile as if to say, “Look at me and how big I am.” I see her in the chair, but I remember her body still on the floor for a micro-moment: Rest.

I need to learn to  rest like this as well. Metaphorically, of course. When I’m tearing about my day, running from meeting to meeting, I could benefit from taking a lesson from Sarah just by pausing for a moment to allow my body, mind and soul to rest – even for a micro-moment.

I thought about this while I was on vacation last week. Theoretically, vacation is a time to recharge and rest. For us, there is still much “work” to be done and very little time to rest, relax, simply to be. In fact, a colleague-friend of mine just asked me if I ever really rest. “Not really,” I answered with a laugh. But if I think about Sarah’s way of resting, there is plenty of opportunity to rest, and I take those opportunities all the time.

Just by breathing deeply and being mindful of the air around me, I rest. By closing my eyes for a moment and imagining the sound of the ocean or the laughter of Sarah, I rest. Even dreaming of the day when Catherine gets into the appropriate school gives me hope and a micro-burst of rest. So, there are plenty of times to rest in short bursts before I get up and tear around my life with the reckless abandon of a toddler exploring all she can do for the first time.

Rest.

Smiles

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My mom sent me an article about a girl in Charlotte who has a rare implication from jaundice. She was getting ready to have a surgery that would create deep brain stimulation to hopefully help control her chaotic movements and help her learn to talk. Prior to surgery, she was a lot like Catherine – but she smiles.

I read this article the same way I do a lot of articles like this one, with a panel of questions.

  1. Is there anything I can learn that will help Catherine?
  2. Should we do something so public to help Catherine?
  3. Do they have the best surgeons? Should we consider going there for some procedure? Same with therapists.
  4. And ultimately, is this kid enough like Catherine to even really matter to me?

Well, in this case, she was except for that one important point that nagged at me the whole way through the article, which got nearly two full pages in The Charlotte Observer. In photo after photo, Lexi was smiling. And the doctors and nurses and family members surrounding her were smiling. And you could tell they played off each other’s energy with that smile. In fact, the mom even talked about how the smile was what kept her going.

So what about those kids who don’t yet smile? Catherine doesn’t smile. Not really. She has a facial movement we refer to as a smile, but unless Brian is rubbing her head, she doesn’t really do it in response to a social interaction that one would normally expect to cause a smile. She doesn’t do it when she hears my voice. Nor when I hold her. Nor when I tell her how beautiful she is. Her affect is nearly always the same. When Catherine smiles, it’s usually in response to some physical sensation that must feel good to her – or be so intense that she can’t help the facial response.

And so I concluded the article with the last point that usually rattles around in my head, probably unfairly so, but this is an honest admission: Do they have it as hard as we do?

There, I said it. Well, I wrote it. And right now, no one even knows this blog exists, so no one may ever read that. Or I may open up with just that must honesty about life with a child that doesn’t smile. I think if I could have one single thing happen, I would have Catherine smile.

I don’t say that to take anything away from the struggel the Haas family faces. You can follow the story at their Caring Bridge site. Lexi really is a beautiful girl, and I wish the very best for her. Who knows, maybe they are paving the way for Lexi to talk and Catherine to smile one day.

Allergies waiting

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Once again, we’ll wait and see…

Catherine had a severe respiratory attack  on July 5 after going out for a bit of ice-cream to close the holiday weekend. We wound up riding via ambulance to the ER. Happy Independence, huh?  Suspecting the ice-cream we let her taste, we asked her pediatrician to run an allergy panel.  Did you know you can do that in a blood test now?

A Friday later, Brian called me at work. He always starts his calls the same, “You in a meeting?” I guess he’s learned I usually am.

“Yeah, just finished though, what’s up?” I asked thinking about the next thing I needed to do.

“We got Catherine’s allergy report back.”

“Yeah? What’s it say?”

“You got something to write with?”

Brian proceeded to read a list of NINE foods that showed up as allergens. Trouble is, one of them was milk. Trouble with that is that the formula for the ketogenic diet she’s on to keep her seizures under control is based in, you guessed it – milk!

I had a bit of a freak-out. If I look back and observe my behavior after that call, it was a bit ridiculous. I wandered from person to person at the office telling them this news. What was I seeking? Some understanding. The problem though was that try as they might – and they did – there was no real way for them to understand all the concerning implications running through my mind. I needed to talk to a friend who had a kid like Catherine.

The special needs world calls kids without special needs “typical.” Sometimes the parents of typical kids understand my laments. But sometimes, I need a mom of a kid with special needs. This was one of those times. It’s not that my colleagues didn’t get it. I think they actually did. But it was my lack of feeling understood. The lack of relation that made me not feel in my bones that they felt my fear in theirs. What’s that about? It’s certainly not fair to my typical parent friends. And, frankly, it puts a lot of pressure on my special need parent friends. I’ll have to keep thinking about that some.

The good news is that we just met with Catherine’s allergist this week, and he sees no reason to take her off her KetoCal, the formula designed to control her seizures by keeping sugar and carbs away. I actually couldn’t believe a med school degree was required for this when he said, “The way we diagnose an allergy is to have a clinical reaction to a food and a blood level response. She’s not had a reaction to milk for years, so even though her blood level indicates she might, we would not call this an allergy.” That’s so flipping obvious that it made me laugh at myself for that ridiculous day I ran around trying to find someone to understand. Had I just been still for a moment, I’m sure I would have understood in my very own typical mom and special needs mom brain.

So, we wait to see about the other 8 allergens. We’ll think of Catherine as allergic to peanut, egg and soybeans. But mostly, we’ll just wait and see.

Waiting,

Ellen

School

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Catherine has been attending UCP’s Delrey school this summer. So far, she’s doing great, and we’re really happy with it, especially in comparison with the county school for special needs kids. They’ve been able to feed Catherine and to help her use switches to communicate, and she’s doing great! She had a “jam session” with one of her classmates, and they both activated switches to make music. Both these kids are ones folks might think can’t do anything. But Delrey believes in these kids, and they work harder and look a little more creatively at the ways in which the kids can respond.

For example, the one boy uses a switch at his toe and his elbow. I remember walking into Delrey the first day. We talked about using Catherine’s legs for switches rather than her hands. They wanted to know which leg was more responsive. I guessed the right, but told them I wasn’t sure. They asked what would be a second point? “A second point?” I asked. Frankly, I would be happy to get one point communicating clearly. “Yes, we like to find two so we can work on more complex communication ideas.” Wow! Not only were they trying to find communication opportunities; they wanted COMPLEX communication opportunities. I’ll take it!

Anyone in the MD area reading this can check out the school at http://www.delreyschool.org/ It’s a great program.

Cheers,

Ellen