We are about to take off! I am already worried about my battery. Will post as long as I can 🙂
Today we head to the North Pole!! Yes. Really. I hope there is time to share the trip with you. If you have any lingering questions about the whole Santa Clause thing – this will surely settle those for once and for all!!
Enjoy the ride! We just boarded the shuttle to take us to the airport. We were up before the sun!
We’re down to one nurse working 2 nights all week. If you didn’t do well in math, that means we have 71.42% of the week without overnight nurse coverage. I have a friend with a severely disabled child, and she is not sure she even wants nursing. For us, I’ve been known to say it’s the single most important support we have for Catherine and our family.
Before we got nursing, for the first 3 years of Catherine’s life, Brian stayed awake 22 hours each day. I would get up early before work, and he would go to sleep for 2 hours before I left for the office and then he’d drag himself out of bed and be responsible for Catherine all day. Some of my cutest memories are walking in after work to see her sleeping on his chest. He’s sleeping, too. How could he not? Then he would sleep all day on the weekend to try to make up for what he lost through the week.
I remember desperately trying to get overnight nursing arranged for Catherine. So many forms to complete. So much anxiety. I’ve told folks I always felt like it was what I imagined a drug deal would be like. Very secretive. Not clearly understood except by those “in the know.” And lots of concern that one wrong move would be catastrophic. I still fear we’ll lose nursing somehow. Budget cuts are rampant. Someone might decide she’s no longer eligible. Impossible to believe that, right? The thought haunts me.
I hadn’t really thought about “losing nursing” by not having the shifts staffed. The result is nearly the same. The bottom line is that when we don’t have nursing shifts covered, one of us has to stay awake overnight and make sure Catherine is safe and cared for well. As we face that reality, I think about the effects of not having enough sleep. Sure, you can read about it on websites – irritability, obesity, loss of short-term memory, reduced immune defense. No one writes about the effects we experienced when we dealt with this chronically during the early part of Catherine’s life. The hardest part of not having nurse coverage and not getting enough sleep is that it puts tremendous stress on a marriage.
When we don’t sleep, we lose patience with each other. We don’t make good decisions. We can’t remember what we planned to do and we have little awareness of what might cause frustration. God knows we can’t really be helpful. We get sick and place more demands on each other. We eat poorly. We fight. We don’t talk. We don’t have energy for anything that’s not mission critical. It’s ugly. And I don’t like it one bit.
My marriage is my most important blessing in my life. I adore Brian. I want him to be happy. I want us to laugh and celebrate our 60th anniversary. In fact, I just wrote that on a goal sheet entitled, “In my life, I will…” So, faced with the possibility of a nursing shortage of more than 71% for our family, I’m trying to figure out how I’ll protect our marriage and keep our family functioning well. I keep reminding myself that we haven’t actually LOST nursing. We’re in a tough spot, that’s all. It shouldn’t last forever. There is hope every day that our agency will find new nurses who can care for Catherine well and stay awake. And without even knowing it – they’ll also keep our marriage and family healthy.
Now that I’ve put it out there, I feel an obligation to write. I said I’d be writing more to anyone reading this and so I feel like I must make that happen. Just because I said I it was a goal of mine.
I’ve heard it said that you share your “do more” goals with friends and keep the “give up” goals to yourself. Or is it the other way around? I sort of think that regardless of the type of goals, we need to share them with someone if we really want to make them happen. For example, we have a goal-setting dinner as a family on New Year’s day. It’s part of our tradition with collards and black-eyed peas and driving to the beach to have a picnic in the freezing cold where we can feel the energy of a fresh start to the year. We each think about what we want to make happen for the year. We write it on a piece of paper and tuck it into these glittery boxes that make the ritual seem extra special. Even Catherine sets some goals.
Usually, we keep the goals private. I’ve never pushed that point with the family as I respect each person’s privacy with their own goals and wishes and dreams. I even wish there were a way Catherine could write goals on her own so she could keep them private if she wants. A couple of times a year, we pull out the boxes at dinner and each look at what we wrote in order to make sure we’re on track to hit them by the end of the year. Sometimes they get discussed. Many times, the goals remain special and private.
This year, we had set a goal to travel internationally, so we made that happen. We had shared that goal with each other and knew it was in our goal boxes. When I left my prior employer and had no income, Brian and I discussed whether to cancel the trip. Knowing it was a goal in our boxes, I thought about it a little differently. There was already an expectation we would make it happen within the family – and so we did. And wow am I so grateful we did!
I am coming to believe that it really is more powerful to share your goals with someone – all of them. People want to help when they hear them. People want to encourage you – hold you accountable – help you make it – all because it seems it’s human nature to want to see people do what they say they want to do. And sharing the goal seems to set an expectation in the mind that it will happen. I wonder if neuroscience can prove that yet?
I think this time, in January, we may do it differently and share our goals with each other. Because a goal shared is much more likely to find its way to accomplishment. Take a risk today. Share one of your goals with someone and see what happens. If it’s too scary to tell your spouse or best friend, then tell a stranger waiting in the grocery line while you’re chatting. Sometimes it’s easier to share the big stuff with someone who isn’t so intimate.
I find that the act of sharing my goals – as wild and “impossible” as some of them are – starts to build hope. And hope builds action. And action brings results. And that gets us past our own disabilities.
The past sixty days have been hard; I’m not going to lie. Perhaps the fact that I’ve not written much is evidence of that. Shutting down a business isn’t easy or fun, so I’m especially thankful for the extra-good blessings as Catherine continues to recover. In a nutshell, she’s given us three spectacular gifts over the past month. And each one has been sweeter than the prior. She took her first steps after surgery, we went camping for the first time since Sarah joined our little family, and – oh yeah – Catherine started to sing. Yes, I’m serious.
Think about this for just a minute. Catherine’s second surgery was 8/21/13. And remember that was the second time she was cut from tip to tail as they exposed her spine in a surgery described akin to quadruple bypass open-heart surgery in an adult. So, imagine my sheer joy in watching Catherine take her first steps only 7 weeks after she survived that risky day in the OR. (In case you missed it, you can click on the green link in the prior sentence to watch). And then take a look here – this is a close-up video of the quality of her steps. You’ll see precision in the heel-toe placement of her steps. Even our therapist was impressed. And in case you don’t want to watch the video, I’ll share the below images so you can see how nicely she stands in her gait trainer and how great she looks overall. No doubt, I am incredibly grateful. But keep reading…
Next, we went camping. If you know even one thing about me, it’s that I love the outdoors. When Catherine was born, I sold my soul to the Devil and we camped in a camper rather than a tent just so we could accommodate Catherine AND I could get outside. Since Sarah was born, though, we’ve only slept one night outdoors as a family and that was in our backyard – even though we got a family tent years ago. I had no idea how much I missed it until I went. Thanks to an amazing friend who somehow knew I was going to need this more than anything I could imagine, we went to western Maryland and spent two nights in the pouring rain and had a blast! My entire being came back to life, and I came back with a restored soul. Seriously – it was that good for me. Just take a look at some of these photos. I actually asked for the one of me cooking to be taken because I wanted to remember that feeling forever.
And then, as if the month couldn’t get any better, we got to visit with Dr. Jan Van Dijk, the world’s authority on reaching deafblind children. He was even knighted by the Queen of the Netherlands for his work and he received the Anne Sullivan award (you do know who she is don’t you?) I called him the Special Needs Whisperer, and he came all the way from the Netherlands to see Catherine. Catherine can hear just fine, fortunately. She’s registered with Maryland’s Deaf Blind Connection because of the difficulty reaching her given her extreme challenges with communication. And Dr. Van Dijk – I’ll just call it miraculously – got her to sing!
I have to confess that watching him, I was uncertain. I sat with the eyes of our home-school administration wondering what they would think about him and anything he’d say. I put on my most scientific hat and watched only for evidence. I stuffed hope down deep inside me and just waited for any evidence to appear – or not.
Repeatedly, he asked her yes/no questions and got her to raise her right arm for yes in appropriate ways. I wanted to believe this was purposeful. I really did. It was hard to deny the frequency and consistency of her response. My scientist remained skeptical, though. I even asked him, “How do we know this is purposeful?” His reply was simple. “It looks to be based on observation consistent enough that I believe it is.” He paused as if letting his accent sink in a bit. “Do you?” he asked. “Yes,” I had to confess, wondering what Brian thought of it all.
He asked us about her MRI and what it looked like. He mapped what he observed her doing with what we told him about her brain. “It’s all there, but it’s squished you tell me,” he kept repeating. ‘Squished’ is exactly what it looks like on the MRI according to her neurosurgeon and we had explained that as I drew a picture of her brain as I’ve seen it from her MRI. “Well then, we must try music. We don’t know how, but music is the way to reach her.” I looked at Brian acknowledging that Dr. Jallo had said the same thing when Catherine was just a baby.
He went to get his Ipad, found some classical music, and he started to play the music on her hand. As the music built, he tapped her hand more forcefully. When the music lighted, he tapped her hand more lightly – like a feather stroke against her skin. After a few minutes of this as I was watching wondering what, if anything, would happen, she lifted a finger and uttered “aaahhh.” Dr. Van Dijk’s response? “Wow!” And I captured the moment on video.
“Oh, you want to sing, Catherine?” He proceeded to tell her the story of a deaf girl everyone said couldn’t sing who started to sing. Interspersed in the story, he listened for her to sing more. As time went by, he began repeating her sound, letting her lead. This went on for some time – so long that my skeptical scientist eventually retreated. My “mom” came back out, and I wept. Not the tears that sometimes come when it’s obvious I’m expected to cry. But tears that had been stifled because I’d started to believe we’d never reach her and be able to communicate – tears that had hidden underneath lost hope. I have to confess thinking about it weeks later. My little girl can sing. Take a look – or rather listen – and see if you agree.
Catherine saw her buddy, Dr. Miller, today for her post-op visit. He said she looks great and he released her to do nearly everything. No twisting yet. No lying on a therapy ball. No ATV rides. No trampoline bouncing over 6-8 feet. Other than that she’s cleared for play.
So she got fit for new leg splints to help her stand with good support. Thinking about what Sarah would choose, we ordered flowers and ladybugs with teal foam and black straps. They should look really cool. And she and Brian will make another trip next week to see if we need any wheelchair adjustments. We are definitely making sure she has all the right bio-mechanical supports in place in the next couple of months.
Official word is that she is about 2.5″ taller. That surprised us because her head came up 5-6 inches when she got in her wheelchair, remember? Miller explained that her official length prior to surgery was measured lying down. So the effect of the curve on her height wasn’t as pronounced as it was when she was sitting in her chair. That makes sense now that I think about it.
Great day in DE getting all set up for whatever is next. I remain grateful for all those at duPont who help along the way. Enjoy the photos!
I don’t know what to write next. Normally, I hear a muse that helps me write. Yes, literally. Since we’ve come home, I haven’t heard it – or is it a she? Perhaps that’s because within days of coming home, I had to announce that our company was closing. I’m so used to dealing with stress, I don’t think I even recognize it any more. I’m pretty sure that was more than stressful, though. Thankfully, yesterday, I heard my muse.
Catherine is doing remarkably well. Within two days of her homecoming, she stood up with her therapist and was able to bear some weight on her legs. Two days later, she did it again, and actually tried to take steps. Our PT had to hold her back. I would think that would make me ecstatic. Instead, I think the news of CDP holds me back. I feel a lack of energy and sadness at the loss. Thank goodness Catherine is doing well. I sometimes think about what might have happened had Dr Miller and Dr. Thoreaux not been able to stabilize Catherine in the first surgery or if their educated hypothesis had been wrong in the second surgery. Maybe it’s a good thing those thoughts can stick around so I can juxtapose them against her amazing recovery. Because right now, I am focused on helping our team get jobs and helping our clients transition well.
All this makes me think about the purpose of this blog. In an outplacement workshop we had, we were asked what we want to do next. The workshop was less than a week after the shock of the news and folks were loudly silent. I broke the ice: “I might like to try writing a book.” The consultant said, “Then you should start a blog.”
“I have one already.” A few heads nodded in the room because they are regular readers (Thank you!).
“Oh really? What’s it about?” she asked.
“Well, it’s about hope despite disability.” In a split second, I opted not to say it’s about Catherine, because it’s really not. It started that way, sure. She provides much of the backdrop because I learn so much from her. But it’s not really intended to be about “Catherine did this and Catherine did that” as much as it’s intended to be about hope I discover through her life.
One of the most profound things I’ve learned about hope despite disability – any kind of disability – is that hope appears because I look for it. I expect it to be there. And it is.
I thought about that as I face the fear, sadness and emptiness I feel going through a shut-down of a fifty-year-old business. I need to go out and look for hope. I’m looking forward to the excitement that will build in the new places to look. And you, Catherine, please keep flying while I venture out on my hope hunt.