Just Wait and See

A blog about hope, despite the disabilities.

I Wish I Knew

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The most common question I get from people who know Catherine right now is, “How’s she doing? Is she over the pain?” I wish I knew. Most times, she seems comfortable, but frankly, she seemed comfortable even just after surgery. Of course, that was due to drugs. So now when she’s sitting quietly in her chair, we assume she must be comfortable. But I don’t really know.

This past weekend, we were at the park. I looked up and saw her crying. Catherine doesn’t cry often, so when she does I immediately pay attention. In fact, she doesn’t actually cry. She makes what Brian and I call “the crying face.” She opens her mouth yet sound doesn’t come out. She squinches her eyes and her face turns red – just like a kid having a major meltdown. But there is no thrashing and screaming from Catherine. She just makes the crying face.

I took her out of her chair and sat her on my lap. The crying face disappeared immediately. Was she in pain? Possibly. Did she just want Mommy? Also possible. Was she just tired of being in the same position? One would certainly think it would get old to sit in a wheelchair for a long time. But the reality is that we don’t actually know for sure.

We’re not giving her any more meds for pain. She gets occasional Tylenol because she’s technically in “some discomfort” until she turns 7 in February. So, when you ask me how she’s doing, I’ll tell you fine. But the God’s honest truth is that I wish I knew.

Hand Painting at a Festival

Waiting to get Catherine's hand painted at a fall festival. Sarah got her eye painted.

Are We Out of the Woods?

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We passed three weeks post-op on Wednesday, and on Monday, we go see the surgeon to see how Catherine is doing. She’s doing so well on the outside, it makes me wonder if the proverbial ‘other shoe’ is about to drop on the inside. Is the hardware still in place? Are her bones healing well? Have we done a good enough job keeping her knees and toes always pointing at the ceiling? I sure hope so.

Lately, she’s been expressing more pain by whimpering and, at times, yelling in her own way. I interpret this as a good thing – not that she’s in pain, of course – but that she’s letting us know. I think she’s moving more and sick of being mostly on her back. When she moves, I know it hurts a ton! I also think that since we’re weaning her somewhat from her meds, she’s more alert and more aware of the pain. That’s a double-edged sword, of course, but overall, I think the signs of pain are, relatively speaking, good.

Tonight we went on a walk. It’s 73 degrees according to my “always on” weather station. Sarah rode in a stroller (which she rarely does) and Catherine rode with her legs extended, knees and toes to the sky, and we strolled through our neighborhood. Brian and I talked about the day, and we reflected on a house we could have bought for about $140K years ago. Brian told me about Sarah playing in water and watering the plants. I told him about hitting off the first tee in over seven years. I hit it straight and long and was quite relieved! And I realized something during our walk…

Life is good. May it stay so for awhile.

Hope the Surgeon Isn't Hungry

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I’m surprised by how relaxed I feel early in the morning on the day of Catherine’s really big surgery. After all the planning, prepping and praying, I feel remarkably calm. As I’m writing this, however, a little spiral of nerves is beginning to spin in my stomach. Oh well. ‘Twas nice while it lasted.

Catherine is expected in surgery about 11:45 AM today. They take here “when they’re ready” so it could be a little later than that, and I’m thinking it will be. Now my biggest concern is whether the surgeon will be hungry while he operates! I’m going to take him an apple and banana and energy bar. If nothing else, he’ll laugh, and that will be good.

He listens to ABBA in his OR. When I asked him why he chose that music, he said, “Because I think it’s happy music, and I like the kids to hear happy music.” Love that!

So, technically, Catherine is having a dega osteotomy and bilateral femural osteotomies. I hope I’ve spelled that right. Her left hip is completely out of socket, so they’ll cut the hip socket to make it cup better to hold the head of her femur in place. Then, he’ll cut her left femur to make it line up correctly. He also plans to cut her right femur so it will be lined up better, too. He does not plan to cut the right hip, fortunately. So, Catherine will have 3 boney cuts this AM and we’re told a month of pain and then 3-6 months of “discomfort” – just a bigger word for pain. I’m not worried about the surgery – well, other than the surgeon being hungry! I’m worried about the pain.

I know many of you who read this blog will pray for her. I really really appreciate the prayers. Knowing many are praying for her gives me peace, and I am confident God listens. When you pray, please ask God to minimize her pain in whatever way he can. And please pray the surgeon isn’t distracted by anything like hunger – ha ha! And of course, that it goes well overall. Thank you very much for the prayers and good thoughts and energy sent her way today.

And God bless Catherine today.

Love,
Ellen

Magical Experiences for Disabled Kids

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Wow! Some days you’re just thankful you got up and had the stuff on your calendar that was there.

Catherine didn’t have an aid on Tuesday, so I got to play that part at school. I actually love the excuse to spend a whole day with her, just the two of us. As soon as I walked into the classroom, her teacher said, “I’m so glad you’re here today. MEAC is coming!” Her eyes twinkled (literally), and I wondered what the heck was a MEAC.

MEAC stands for Magical Experiences Arts Company. They don’t even have a website. If you google them, you just see a bunch of grants they’ve won. Good thing they’ve won them, too. They are literally bringing magic to severely disabled kids. According to their brochure, they provide “interactive performances which: empower, inspire and educate children, adolescents and adults with severe multiple disabilities in a safe, nurturing environment.” They bring creative theatre programming to Level V schools and facilities. These are the places where the kids learn through the most challenges.

They hung silk fabric as a backdrop to the room. “Most of these kids can’t even see that,” I thought. Yes, even I get cynical. They wore sparkly costumes and paint on their faces. And just like a typical theatre troupe, they set the stage for a story that took us around the world.

As we visited various countries, pixie dust fell from the sky. Wind blew fiercely. Puppets started to dance. I wondered if the kids had any idea what was happening. But as I watched closely, I understood.

Catherine feels magic pixie dust that fell from the sky.

Just like in normal theatre, these elements were merely props. The actors told the real story by communicating with their audience. And unlike any I’ve ever seen before, these people actually communicated with these kids. They SAW them. They looked at each child with such intensity it was nearly uncomfortable at first. But then, my eyes welled up.

This complete stranger actually sees my daughter. She’s not afraid of the disability. She’s actually looking right at it. She’s not afraid of the little girl. She’s actually trying to find her. I’m welling up again just writing about it.

She’s watching her. She’s listening to her. She’s loving her. She’s touching her. She’s communicating with her. And Catherine began communicating back.

At one point in the performance, the fairie became a puppet that would spring to life only if the child touched her.

Catherine and the puppet start to dance.

I helped Catherine do that and the puppet awakened and wanted to dance. I moved Catherine’s arms to pull the invisible puppet strings and the two began a dance. At first, it was limited to Catherine’s upper body. I swayed with her and kept moving her arms. But then, I felt Catherine’s energy shift.

She wanted to stand.

Who is actually awakening?

The energy starts to shift.

I helped her stand, and she danced upright with the puppet. Somehow she felt this energy of having been completely and utterly seen by another. She rose with it. And she danced.

When you get the chance, I hope you DANCE!

Another little boy moved in a similar way. As the puppet moved to other children, the teacher and I realized Catherine and the other little boy were still standing – still dancing. We  moved them together, put Catherine’s arm on his shoulder, held out their other hands to each other, and stabilized them for a dance.

As far as I was concerned, we were at the prom. And the theme that year was magical fairies.

Thank you MEAC.

Daddy Fix It. With Tape!

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Sarah has recently entered a “tear the page” phase with her books. It’s annoying to me, but she seems to get some sense of accomplishment from it.  She’s torn many pages and Brian diligently fixes them with packing tape.  Somewhere along the line, Sarah started looking at every torn page while saying,  “Daddy fix it… with tape!” She has such enthusiasm for the proclamation. And she emphasizes the “With TAPE!” part every time.

I was driving home alone after dropping both girls at Delrey on the morning of Catherine’s most recent IEP meeting (they were nice enough to let us put Sarah in daycare for the day – and the meeting went relatively well). I took a corner too close to the curb to handle the custom-lowered floor. I wrecked our six-week old van on the ramp door side. Ugh! The ramp wouldn’t deploy. The door barely closed. I didn’t even want to tell Brian.

Of course, I did, and the next morning when we had to all load  up for the trip to school, Sarah patiently stood outside the van and said, “Wait!” because she knew the ramp should come out of the door. It didn’t. We started to move toward the van, and again she yelled, “Wait!” but we had to keep moving so we wouldn’t be late.

I tried to explain that I had broken the van and the ramp wasn’t going to deploy. She looked so confused. She kept wanting to wait, so I finally had to pick her up and put her in her car seat so she could ride to school with Catherine. She struggled and screamed, and I finally said, “Sarah, listen to me.” She usually looks at me when I say that, and she did this time, too. “Mommy broke the van. Mommy broke the ramp. It doesn’t work anymore.”

She looked up at me with big brown eyes and in a split second said, “Daddy fix it! With tape!”

My body was laughing, but my soul shed a tear. Some things just can’t be fixed… With tape!

Compelled

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I find it remarkable – the way the world works.

Yesterday, we had Catherine’s annual IEP meeting. Yes, another one. After the meeting, Brian and I stopped to grab a quick lunch before we headed home. I saw an elderly lady come into Panera using a white cane with a red tip. I always pay close attention to a blind person using a cane, so I stared. I wondered if the women she was with thought me rude, but I couldn’t help myself.

We sat down at a booth, and I watched the woman walk unassisted to her table behind her lunch companions. “I wonder if she’s really blind,” I thought. What I mean by that is that I wondered if she were in total darkness. Sometimes people who are legally blind use a cane so the public will be patient with them. I get that. It’s actually pretty rare to be totally blind and have no light perception (NLP), which is Catherine’s situation as far as we know.

Throughout lunch, Brian and I talked about the people at the IEP and what we thought of the meeting. I kept feeling compelled to talk with this woman, though. It was as if a magnet was drawing me to her, and I couldn’t ignore it. Finally, as we got up to leave, I asked Brian if he’d mind. I think he thinks I’m a little unusual when I start a conversation of depth with a complete stranger.

Tentatively, I approached. “Ladies, may I interrupt you?” They looked up with inquisitive eyes. Even the blind woman looked right at me. “I have a six-year-old daughter who is blind, and I’ve been so impressed watching you get around independently with your cane, and I just wanted to come over and say, ‘Hi.'”

“Oh my goodness!” one exclaimed. “Of course you may.”

“I guess I just like seeing blind people out and about living a normal life. It gives me a bit of hope,” I said.

“Is your daughter walking?” one asked.

“No, she also has cerebral palsy. But I still like seeing independent blind people.”

“Well, I probably give this lady way too much help,” one of the friends said. “I’m not going to tell you how old she is, but she still lives independently.” They all laughed and the blind woman looked right at me and said with a smile, “I’m 90 years old.”

“Wow! I thought you were closer to 70.” And I did. She proceeded to tell me she had macular degeneration, and I asked her  if she could see a form of me. She shook her head no and told me her vision gets worse over time. She told me she could make out a little light sometimes, but would eventually be in total darkness. And she lives by herself. I was more than impressed; I was inspired.

The woman who cared for her too much asked me, “Do you think your daughter will walk?”

“Well,” I took a deep breath, “a mother’s hope is eternal, but I just came from a school meeting, where I’m sure they would tell you no.”

“Where does she go to school?” she asked.

No one has ever heard of Delrey in conversations like this, but I politely said, “Delrey.”

“Oh, I know that school!”

“You do?” I said surprised.

“Of course. Years ago, I was a PT in Anne Arundel County Special Education. And I don’t know what you met about, but I bet I’m on your side.” She literally moved her body as if she were moving to “my side.”

How does the world work like this? But more, why do I keep meeting people who let me know in their underground ways that I’m doing the right thing to dig in so hard with the County? I’m just thankful they appear.

She is one of several people I’ve run into casually who has said something that makes me know in my bones that every second we spend preparing for these meetings is worth it – even if it keeps me up until 3 AM  as it did this weekend. We’re not just preparing for Catherine, but for all the other kids who don’t have someone fighting as hard for them. For every time AACPS has to work a little harder not to give a kid what they need, they have to think a little more about what they are doing. And those people who casually tell me to fight, or to keep going because they know what really goes on in there, or even to sue, get their message back to AACPS through parents who argue and present their positions in hopes that it will change.

And maybe it will. Yesterday, we had some small victories. The best part was that the County took off an objective they had last year because Catherine met it. Did you hear that? Catherine made progress and met an objective. She consistently appropriately expressed pleasure or displeasure at various stimuli. Yeah! I literally made the room applaud for her!

We still have another meeting scheduled to finish the contract (an IEP is a contract with the state), but there may be some reason for a tiny ray of hope in a system that is horribly flawed. I can’t rest on hope, though. We have to listen to Catherine’s attorney, prepare well and go in fighting on another day. I bet I’ll see the blind woman and her PT friend in my mind – inspiring me to press on.

A Collision of Importance

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“NOOOOOO!”

I heard myself scream at Sarah as I saw my favorite bowl crash on the floor in four or five chunky pieces. Her defiant eyes dared me as she raised it over her head. In a millisecond, it was done.

My look and scream clearly scared her as I watched her eyes widen and she pulled her face back a bit. I had even less time to decide what to do. I ran away.

In the bathroom, I cried and cried. I realized I was crying way too much for a ten-dollar clay bowl I had bought at a farmers market. In many ways, I was being ridiculous and Sarah’s reaction burned into my memory. What should I have done? I was glad I removed myself from the situation and let Brian take care of it. But I loved that bowl. It was Catherine’s bowl.

I had bought it on a warm spring day from a local potter at the market. The turquoise and purple colors made me happy, but more importantly, it was the perfect size for Catherine’s food in the mornings. When I bought it, I remember thinking she’d eat better from that bowl because it was made of clay and natural. Someone had made it by hand. I had pictured the potter spinning that bowl and imagined that the care in her hands would make its way to Catherine. She would feel that energy in her food, and it would bolster her and she would learn to eat better.

Call me crazy, but doubt erupted as the real villan as I sat doubled over crying. Could Catherine keep eating without the bowl? Certainly. But the hope that resided in that bowl crashed to the floor as well.

So this morning, I’ll feed Catherine from another bowl. She’ll eat as well as she is able from the new bowl. And just like every day with her, I’ll  look for hope in a new place.

Happy Birthday Sarah!

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Yesterday was Sarah’s birthday. I had hoped to write in this blog then, but work got in the way. Which makes me wonder if now, rather than the Observer, I’m the Executive Mom who puts work before her kids. Yuck.

I actually don’t think so. I actually think I’m pretty balanced about it. Brian might disagree, and he does occasionally ask why I’m coming home so late when I call leaving the office again after 7 PM. But I do try really hard to get to the appointments and be there on the big days, and say prayers every night and kiss and hug both girls every day. Is that enough?

Yesterday, I came home after a pitch rather than going back to the office. I had left the house too early to see Sarah, so I wanted to see her in the afternoon – not just for the bedtime routine. We needed to do cake and candles and presents before she was bouncing off the walls and telling me she had to eat AGAIN just so she wouldn’t have to go to bed just yet.

I had an idea! I called Brian as I neared the house, knowing Catherine was in PT. “What does Sarah do during PT?” I asked. “We usually play in another room,” he said. “Get Sarah ready. I’m going to take her to The Park.” Both of us knew this was a special birthday idea.

Sarah loves The Park. “Park. Park. Park,” she says as soon as the word is uttered. She stands near the door and repeats herself, “Park. Park. Park.” It’s sort of like a puppy. She loves the slides and running in an open football field the best. She likes the swings for a bit – longer and longer each time, actually. But she always tells me when she’s “all done” on the swings. She is never “all done” on the slides or running and twirling in utter freedom.

I didn’t even take time to change from my pitch clothes. Daylight was slipping away, and we needed to go quickly. We ran out the door and headed directly to The Park.

Less than 3 minutes later, I got The Call.

Work.

They needed to talk with me about a presentation we have today. Work. Sarah’s Birthday. The Park. Really? I suppose I could have said no. And that’s what the magazines all say a woman is supposed to do sometimes. Was this one of those times? Should it have been?

I pushed Sarah in the toddler swing until she was “All done.” I had to make my colleagues wait when I got her out of the swing because her feet got stuck. I told them where I was, so they had to put up with a bad cell signal, the other screaming kids, Sarah’s cries when the swing hit her in the lip at one point, me disappearing for a bit to pick her up and give her a hug and kiss her tears goodbye. By the time I finished the call, it was getting dark and cold and I had only a few minutes to sit on the big swings and hold her and repeatedly sing “Happy Birthday, dear Sarah…” as we swung into the twilight sky.

I hope I will forever remember that late afternoon swing. Sarah never told me she was “All done.”

Be Prepared

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This morning I found myself thinking about one of our dogs, Sydney. She’s a Border Collie who lives with her brother on a farm in SC where she has loads of room to run and play. Ever since she was a puppy, she’s loved to run after things and bring them back to you. At first it was bottle caps on the kitchen floor. Later, it became catching frisbees high in the air.

When we first moved to MD, she was living in SC while we made the transition to a new state. We got a call that she’d been in an accident – seemingly hit by a car. By the time we got all the information, we learned she’d broken her back in 5 places and had brain damage and would likely not live. We took her to another vet. Again, we were told bad news, but told of Va Tech, which has the best vet school on the east coast. We loaded Sydney on a backboard, literally, and drove overnight to Va Tech, where they opened up to receive us in the middle of the night. I remember the surgeon telling us she’d have about 50% chance of making it, and she might lose her front leg down the road. I’m not as close to dogs, but Brian said immediately, “We have to try.”

Later, over the coming weeks, I had a dream. I saw Sydney running and jumping and catching frisbees with only three legs. She was happy, but more importantly, I had this deep feeling that through all of this, we were being prepared for something. I had no idea exactly what, but each weekend, we’d drive from MD to Va Tech and help Sydney learn to walk on her three legs. It’s obvious now, but at the time, we just did what we had to do.

When Catherine was born, I recalled that feeling. Somehow, deep in the pit of me, I knew she’d be disabled and I knew we’d been prepared through Sydney. And I knew the phrase, “We have to try,” would become central to our lives. It has.

Separately, I’ve been thinking about some significant happenings at work. Many elements of my past have prepared me exactly for what I face in those happenings. And yet, for some, I feel completely unprepared. And I realized that the ones for which I am not exactly prepared, are preparing me for something else. That’s somehow comforting to me and gives me hope.

The Boy Scout motto also echoed in my mind this morning: Be Prepared! I’ve always interpreted that to mean you should have your knife with you or your first-aid kit or whatever other items you need in case of an emergency. But more often, life’s needs don’t respond to a knife or a first-aid kid or an extra set of layers. Instead, they require experience that gives you a level head, a smart approach, and a conviction that “We have to try.” Being prepared isn’t about the stuff; it’s about the experience. And even though you can go into terrain you’ve never encountered before, life’s lessons from your past have prepared you to be exactly where you are in this moment. If you survey your past and realize you have nothing from your experience to draw upon, then you can bet that you better take good notes because you’re being prepared for something down the road.

Not sure why I thought about all this early this morning. But I did and felt like sharing it here. It gives me hope when I’m nervous about those things I don’t quite think I have the experience to solve. Be prepared.

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.