Blank space.  Lots of blank space. An empty glass of egg nog (the good kind) and an empty Word document…Where to start…..  It’s time to write this year’s Christmas letter.  It’s one of my favorite parts of the season! But I’m not feeling it yet.

I start by reviewing last year’s Christmas letter.  I feel like this year didn’t happen.  We are right back where we were last year – preparing for a major surgery for Cooper.  Is this it the rest of our lives? Will we be continually preparing for the next big surgery?  (Catch up on how this is Groundhog Day on Cooper’s Caring Bridge site, look for June 3rd’s post titled Curveball. But the Cliff’s Notes version is this – Cooper was supposed to have hips, legs and ankles surgeries last summer.  We got to the hospital and found he had the beginning of spinal cord damage, so the surgery plan switched to spinal decompression surgery.  Now this summer is approaching and we’re “back to the future” preparing for the surgery we were supposed to have last year.)

I tell ya what, I’m ready for it.  Well, I don’t think I’ll ever be READY for it, but I know it needs to happen. 

Cooper and Campbell are taking ice skating lessons.  If you hear Cooper talk about it, he calls it “training”.  Ya know, because this kid has NHL (National Hockey League) written in his heart.  Lessons are 30 minutes, once a week.  Campbell is doing really well, loving it and ready for more advanced lessons, hockey pads and a stick.  Sweet Cooper is having trouble.  His knock-kneed stance, incomplete hip structure, misshapen spine and large chest cavity prove to be hard to accommodate on ice skates.  Getting up from the ice by himself is near impossible.  He can do the move on the living room rug, but can’t get it to work on the ice.  Tonight was the first night he repeatedly fell to the ice on purpose, just to rest his legs. The instructors offered to help him up, but he chose to sit there for a long while.  My heart broke.  He’s been able to overcome, or we’ve been able to accommodate, everything so far, but not here.  Not yet. 

So my heart knows this next surgery, to correct Cooper’s hip shelves and align his knees and ankles, is a necessity to give him the mobility this active kid desires. 

I have so much anxiety about the whole damn thing.  And again, it’s right where I was last year.  At least I have one out of state surgery under my belt from our adventure this summer.  I know the hospital and when the cafeteria closes.  I know where to order the good Italian food from.  I know a Wilmington Blue Rocks baseball game will cheer us all up.  I know to keep track of the pain meds as close or closer than the nurses do, because they are very busy and Coop isn’t necessarily their number one priority.  I know not to buy plane tickets for the trip home until we know when we’ll be able and comfortable to fly.  I wish I could say I knew where to stay.  The condo we called home last year has had management changes and is no longer doing short term leases.  So I’m on the hunt for a new place to stay near the hospital.  Must have full kitchen and ample space to accommodate the family, two of us who will bring work along.  Must have exercise facilities.  Must be wheelchair accessible.  That doesn’t seem too overwhelming.  Why can’t I get over it?

I think the unknown part of recovery still has me on edge.  True, we’ve done recovery with a neck brace, but Cooper was playing mini golf eight days after surgery!  Time to do recovery in a body cast this time.  The travel will be challenging.  Cooper’s seven weeks in a body cast will be the most challenging.  But we have such great support, family and friends who would stand on their heads to entertain Cooper if I asked them. 

I’m coming to the realization that I need to hand this preparation anxiety over to God and let my heart rest. That’s hard for me to do.  I have too many spreadsheets and checklists and where does God fit in?  I can pick up planning again in February and do the leg work, but I need the rest.  I need the happy elf-like Chris full of Christmas spirit and optimism to show up and write my Christmas letter.  She’s around here somewhere…..

Thankfully my friend Amber’s elf provided inspiration for our elf’s toilet paper snowflakes tomfoolery tonight.

I just realized today that things aren’t going to get better. Nowhere have I ever read, “Well, the first 7 years were tough, then we really cruised through this rare disease thing”.

It hit me when I pointed out a herd of elk across the street from the cabin we were staying at this weekend. Campbell had spotted them, and I pointed them out to Cooper. He couldn’t see them. They were these large, brown creatures, meandering about 200 feet away from us, and he couldn’t see them. I felt sick to my stomach. It’s starting to click. Yep, he fails the vision screening at school every year. Yes, he glasses for an astigmatism. When he wears said glasses, he says everything is blurry, so the glasses sit in a case in his bedroom. He has recently been diagnosed with the beginning of corneal clouding. This doesn’t usually happen to kids, so no one at Children’s Hospital can help us. We’ve got an appointment at University Hospital in November. I feel like we are opening a new can of worms on this one, and I’m scared.

But we aren’t all done with the last can of worms, now are we? Cooper’s (surprise) spinal decompression surgery was June 4. At that point we were told he’d be in a neck brace for 2-3 months. Let’s do the math…. carry the one…. yep, we hoped we’d be hearing we could be rid of that thing by now, four months later. Yet, the latest note from the doctor is something along the lines of “Things look good. Continue to wear the brace for car rides and high-risk activities, do more X-rays in FOUR MONTHS and we’ll review again”. I nearly puked reading that one. Cooper is an active 7 year old boy. I think most of his life is “high-risk”. Riding his bike, playing hockey, football, baseball and soccer in the backyard. Playing sports at recess. Swimming and wanting to ice skate. Participating in PE. Occasional scuffles with his sister. Maybe the doctor didn’t expect Cooper to be such an active kid and that “high-risk” activities weren’t on the agenda. I should feel blessed that he’s an active kid. I should feel blessed he isn’t really bothered by the neck brace. He remembers to put it on, he can do it by himself, and he knows when he needs it. (We’ve been living by the “high-risk activities” rule for a month now already.) At the beginning of the school year, I told Cooper he could take the neck brace off for his school photos. He forgot to, and didn’t care that he had it on. I’m not going to have him retake the picture without the brace. This is real life, and where he is right now. And he’s happy. Apparently Brian and I are the ones who so desperately want the neck brace gone.

All of this swirling though my head as we now have new dates for this summer’s surgeries for Cooper’s hips, knees and ankles. This part sounds like a broken record, I’m sure. This is the exact same place we were last year, preparing for this surgery before we found the severe cervical stenosis that forced the spinal decompression surgery instead of the hips, knees and ankles last summer.

It’s a lot to process. But at the same time, I find myself needing to adjust my filter. When Cooper gets mad at Campbell for something that seems ridiculous, I ask him, “Are you making this sucky?” I try to point out that he can be angry at things, and it can suck, or he can let it go and it won’t be sucky. So at this point I ask myself, “Am I making this sucky?” Yes, it may be less than ideal, but I need to adjust my filter, because it’s not going to get easier.