Sunrise: 10:14 am / Sunset: 3:42 pm
I was planning on asking Santa to help fund Alaska' first fully accessible playground, a place where all children can play, regardless of ability. A park that allows access for wheelchairs, canes, and walkers, so no child (or grown-up) remains on the outskirts, watching others engage.
It's taken a few years, but what started as a group of Moms has turned into a city initiative called Parks for All. Our playground will be built behind the Loussac, Anchorage's largest public library, in the Cuddy Family Midtown Park. And though I was heavily involved in the beginning, credit now goes to another Mom, Leah Boltz who has persisted while my challenges have led me elsewhere.
Leah has been tirelessly reminding the Park Foundation and city that accessibility is not a benefit but a right. Children learn through play and what message do we give to kids in wheelchairs when every play structure is adorned with stairs? Or maybe there is a ramp to a lower feature but what if you want to see the view from up high?
I lost some of my fire for accessible playgrounds when Elias transitioned from his walker to canes, but I've never stopped noticing how limiting so many of these "creative spaces " can be. And I'm thankful to Leah for waving the flag, and ringing the bell, and writing the letters, and making the calls, and not letting down even when I did.
And now I'm sitting here, a few days before Christmas, thinking about ramps and wheelchairs.
For the past three days, Elias has struggled to walk. And I don't mean his normal CP posture-poor struggle. I mean something is wrong, and we don't yet know what.
It started on Sunday night, Olive's birthday, during a family trip to the zoo. None of us remember Elias falling or slipping on the ice but after riding in the sled to the tiger, he couldn't stand up. Jelly legs. I carried him on my back to the snow leopard and when Kathy offered to trade he crumpled in a heap on the ground again.
On Monday he could stand but walking was a strain. "Does something hurt?" I asked.
"No," was his consistent reply. Elias has an extremely high pain threshold. But I could see him grimace when he stood. And I don't know if it is the cerebral palsy or the Autism or an iron will, but the boy never complains of pain.
By Tuesday, he said his leg felt funny but when we asked him where he at different times has pointed to his thigh, his knee and his shin. Both Nick and I thought it could be his hip. And of course we always worry about his brain. Is it bleeding again?
I took him to his doctor Tuesday night and his doctor was as mystified as the rest of us. No fluid in his ears. He thought his hips looked good and that perhaps he pulled a quad muscle. So now we are just suppose to watch him for a few days, and if it doesn't get better take him for an x-ray and possibly a bone scan.
Oh, but it is soooo hard to watch.
"Mommy, will you hold my hand?" he has been asking me today. "Mom will you help me walk?" Our boy who just last week chased his sister all around the house, without his canes, can no longer independently walk a few steps.
And please, Santa, let it be a muscle strain, or a fractured bone even, but please, please don't let it be his brain. Please help him heal, quickly, so he can play. That's all I want for Christmas this year.
On this, the longest night of all, I need to know tomorrow will be just a little bit brighter.
I am keeping my fingers crossed that this is just a pulled muscle, and that Elias recovers quickly. Hang in there (as always). Yesterday was the shortest day...even in Zurich (made me think of you all!) Sending lots of holiday cheer and the smell of baking cookies your way...
Posted by: danielle in zurich | 12/21/2011 at 10:32 PM
How scary!! Praying for you and your precious (and resilient!) family and hoping that Elias is back to chasing his sister in no time!
Posted by: Becka | 12/22/2011 at 07:26 AM
I hope it is just his muscles too. I love reading your blog and follow it regularly but have never posted a comment. Just wanted to let you know your family is in my thoughts. I really hope Elias is back to himself very soon.
Posted by: Kristine | 12/22/2011 at 07:44 AM
Oh my gosh Christy - how frightening. I hope it resolves quickly and that he's back to his usual go-everywhere self soon.
Posted by: Sara | 12/22/2011 at 08:41 AM
Oh so sorry to hear. Sending you all the healing thought I can muster....
Posted by: nerissa | 12/22/2011 at 10:16 AM
Christy...just don't wait too long...sending my healing energy too...valerie
Posted by: valerie demming | 12/22/2011 at 12:52 PM
Oh Christy,
how frightening. Sending prayers and healing from here too. Us readers are all thinking of him and you and hoping that it's something simple that heals up soon.
Posted by: s.e. | 12/22/2011 at 04:42 PM
Dear Christy-
Your post has made me teary... simply because I can imagine, ever so slightly, how it must feel to watch him struggle. I am going to ask Santa for the same thing this year. Let's touch base after Christmas and see if he has delivered...
Hugs as always-
Kate
Posted by: Kate Kripke | 12/22/2011 at 07:01 PM
Just wanted to chime in that my daughter woke unable to walk one day,when she was about 5. It took about three days but she woke one day good as new. There is a virus that can cause it. Hope that is the case for Elias!
Posted by: jamie | 12/22/2011 at 07:14 PM
Christy- just wanted to let you know i'll be thinking about you guys and sending love and quick and easy healing your way...xoxo
Posted by: Emily Kurn | 12/22/2011 at 07:48 PM
Wishing you well... If I was closer, I'd bring you some soup/tea/cookies.
Posted by: Tabatha | 12/23/2011 at 03:41 AM
Be well, Elias. I send wishes for good news and brighter days.
Posted by: Ghkcole | 12/23/2011 at 05:05 AM
I think all your thoughts, prayers, and wishes are helping b/c Elias seems a bit better today. We saw a physical therapist yesterday and she said she sees this often in kids like Elias. They injure one area and where the rest of us can compensate with our other muscles he's already compromised and doing all he can to walk so one tweak or sprain takes him out all together. We think it may be his foot or ankle and she says that often kids with CP can't locate the pain and when they first feel the injury do the jelly leg thing like he did. She's hopeful this is just a bump in the road and not a long term issue so I'm feeling much more hopeful today than I have been. Less scared about his brain and more convinced that he'll be up and about trucking through the snow in no time. And each day we gain a few more seconds of daylight...
Posted by: Christy | 12/23/2011 at 01:24 PM
Whew. Hope he continues to improve and sending all of our positive thoughts your way for a light-filled holiday season and a peaceful new year.
Posted by: Kate | 12/23/2011 at 02:22 PM
So glad to read today's post by you, Christy. Sounds to me like the physical therapist hit the nail on the head! What she said certainly makes sense.
Moms always imagine the worst, and with a child with Elias' medical history, your worst is pretty scarey!
Hope he continues to improve, and I'm betting he will.
Vicki
Posted by: Vicki | 12/23/2011 at 04:05 PM
He'll be fine. He has to be. You don't go through everything he has been through to lose it all now. Keep your readers in the loop because we will all be worrying right along with you. Just squeeze him lots and enjoy the few extra minutes of cuddling that you may be getting since he isn't off chasing after Olive.
Posted by: fleming | 12/23/2011 at 06:17 PM