In a cruel twist, your child starts out his or her life as strong as they will ever be (barring a viable therapy or cure, of which there is none yet available.) They can have peaks and valleys, they can learn to use their strength to their advantage and manipulate their body in new ways, but eventually, there is decline. That is the reality of SMA. Twitching and tics in new areas. Contractures in new joints, loosening in others. Movement slowing, stopping.
I try not to be obsessive about it; I suppose thinking that if I don't give too much credit to the fact that it's happening, maybe it will stop happening. Thinking that if I give voice to the changes, that will make them real - as if they won't happen if I keep my fears in my head. But keeping your fears contained can be a dangerous business.
I worry. A lot. Sometimes it feels like constantly. About everything. In reality, I can get through times of activity fine; school, projects with Lucy, reading stories. And I suppose it's worse in the winter - there is illness swirling all around us, threatening to sneak into our home. Reading updates on others with SMA who are sick, in the hospital, or who have taken a turn for the worse seems to be a daily occurrence.
We live a fairly routine life. Lucy adores her routine, and we've found this winter that if it's disturbed for too long, we have one unhappy little girl. The frightening thing, the worry that keeps me up at night, is that this routine that we've established, the one that brings our family such joy, is one that can be thrown into upheaval quite easily. One of us is sick, Lucy is quarantined to her room, and it's done. But what if something *really* threw our life into chaos? What if something happened to Noah? What if something happened to me? And what if something happened to Lucy, something I couldn't save her from?
I always tell people you can't focus on those thoughts, there's no point, it's not helpful. And there isn't, and it's not - but in the wee hours of the morning, it can be hard to think about anything else. I read in another special needs mom's blog post recently that as a special needs parent, you're always waiting for the other shoe to drop, and I really felt that finally my feeling had been articulated. You've been the recipient of some horrible, earth-shattering news. You grieve it, dust yourself off, do what you need to do for your child. You build a life, and in our case, it's a wonderful life. It's a life I love so much, and feel so blessed to live - and I think that might be why I'm so worried. Because the better I have it, the more there is to lose.
I was reading the story of Christ's birth this morning, and got to the part in Luke where Mary and Joseph run into Simeon in the Temple, and he tells them how great Jesus will be. He also tells them that many will oppose Jesus, and that "a sword will pierce [Mary's] very soul." How must that have felt? To know that there would be that kind of pain lying ahead for her? And that the pain would have to do with her child... I don't know that there could be a greater pain. And that's another thing I worry about. Possible pain. Possible horrifying, excruciating, unbearable, unimaginable pain. And I stuff all that down too, because I fear that giving voice to it will speak it into reality.
So I've been praying about it, a lot. Obviously, to keep our little family safe, and healthy, and to help us get our home into the safest possible environment for her, but also for trust, and faith. These things are present in me, but they need to be built up. Facing a monster like SMA means that they need constant shoring. And I don't think that's something I can do on my own, so I'm asking for your prayers for me, this time. Pray that I learn to let God shoulder the fear and anxiety at all times, not just times when my mind is preoccupied. Pray that I can retain the healthy knowledge and awareness that the fear may give me, but shed the crippling aspect that it can have.
And thank you for always praying for Lucy. She has had a healthy winter so far! We're in the north, so this season is far from over, but we are hopeful that with careful germ avoidance, and keeping her away from all ill people, we'll be able to emerge in spring with a healthy, happy, well-rested Lucy bear :)
Saturday, January 4, 2014
Posted by Lucy's Mama at 8:26 AM
Thursday, December 26, 2013
"This old house... sure is lookin' good..." Can't get enough of that movie! And we are certainly glad it's Christmas vacation around here. I know lots of parents loathe the dreaded "v" word, but when you participate in every aspect of your child attending school, it's a vacation for you too.
We have been keeping so busy this season, and I've been terrible with keeping the blog up. Lucy's been continuing school via Skype...
Pinterest is full of great inspirations, and we tried our hand at several popsicle stick ornaments this year. Some days she was interested in the process, some days she just wanted to choose materials and ignore me while I did the work ;)
We've also managed a lot of snuggling and nap time - is there any activity better suited to winter?
Posted by Lucy's Mama at 4:32 PM
Thursday, November 21, 2013
Back in October, we had a night of fundraising at all three of our local Culver's locations. For people who don't know what a Culver's is, they are the home of the Butterburger, delicious frozen custard, and the most amazing cheesecurds ever to grace this Earth. No joke.
Rick and Pat Miller generously hooked us up with all three locations. They promoted all over the place, got us radio spots, and set it up so that we could have family and friends help out at each location, bringing out food and answering questions from the customers. They also allowed us to have donation cans out at each restaurant for the whole week.
We were told by the restaurant managers that it was their most successful fundraiser to date! Lucy received a portion of sales, and the donations from the canisters, which ended up totaling a $2,200 donation! What a blessing, and another step closer to Lucy's addition!
We are so grateful to Rick and Pat, the managers at each of the Culver's locations, and our wonderful friends and family, for volunteering and working together to make this fundraiser so successful! We are so grateful, and we'll never be able to express just how much we appreciate this.
Posted by Lucy's Mama at 7:46 AM
Wednesday, October 9, 2013
A couple of weeks ago, we were Skyping with Lucy's class, and the connection was awful. Picture was blurry and choppy, sound was garbled, it kept freezing, and the call dropped about three times.
Lucy is not always on her best behavior for Skype class, but sometimes I cut her some slack - what 4-year-old would be completely attentive to something they can't consistently see or hear? That day, though, she got quieter and quieter every time we got the call back, as if she thought perhaps if she was well-behaved, the screen would work.
That made me sad. We do our best to make safe, yet fulfilling choices for Lucy's life, but it can be hard to be sure you're striking a happy balance. Lucy is miserable when she is sick - worse than that even, she's terrified. She wakes up choking in her sleep, and that scares her immensely. So we do our best to avoid her being ill, and we all know that once school is back in session for the year, the germs are rampant. Little ones are sent to school with symptoms, are contagious before anyone even knows they're ill, and let's face it - small children are not bastions of germ control. If I had a dollar for every time I heard Lucy's teacher tell someone not to use their finger, to get a tissue, or to cough into their arm... I'd be able to fund Lucy's house addition! ;)
So home we stay, with our Skype connection that has fortunately vastly improved since the beginning of the year, and in-home therapies. And Lucy usually seems quite pleased with that setup; she can get a bit annoyed when she's not doing something she completely loves, and tends to shut out the offending activity with squishing her eyes shut and loud hums. For school, she's often chatty when she shouldn't be, but overall enjoys the songs and stories. She fits right in with the rest of the characters in her class ;)
That day, when class was over, I had a nice chat with Lucy. I really felt she was listening, which is hardly ever the case - usually she greets my sermons with the aforementioned squishing and humming. Whether it was because she was tired or not, I took advantage of my seemingly captive audience, and we talked about why she isn't in the class with the rest of the kids, and when I asked her if she understood, she smiled. I told her we were going to try to take her on a field trip with her class, and asked if she would like that, and she smiled. I really felt, which is rare, that she listened and gave me honest feedback.
We got over our utter terror at taking Lucy out with a large group of children during a time when it's very probable one of them is ill, and I was making preparations to take her on her field trip. A week beforehand, we heard that there had been a case of whooping cough identified in our district's high school. Since we didn't hear anything locally beyond that one confirmed case, we decided to go ahead with plans for the trip to The Little Farmer, a local apple orchard and pumpkin farm. They were set to learn about apple processing and the bees that they keep there.
The day before, I got an email from one of her teachers, saying that they had decided to cancel the class's field trip, due to various circumstances. They planned instead to have a fun day on the lawn of their school - would Lucy like to come to that instead? I said absolutely! Cutting our travel time to minutes and shrinking Lucy's exposure by a hundred kids was something that was definitely palatable to me!
So we packed Lucy up today and headed to her school, to meet her class in person for the first time. The kids were walking out to the lawn as we pulled in. I was uncertain how it would unfold; last year, she had kids from her class not recognize her when they first met her in person, even after Skyping with her all year, because she was laying down, and it can be quite a bit to take in - seeing her with all of her machines on her chair can be a bit daunting for adults, much less children.
The kids had formed a circle for games when we started rolling Lucy up. I heard her teacher remind them to keep a little distance from Lucy and to keep their hands to themselves. One of them spotted Lucy and shouted that she was there, and it was all over. I heard a teacher say "Keep in the circle!" as a few eager kids surged forward. They were all so excited to meet her and say hi! The teachers managed to wrangle the kids back, and Lucy got to be a part of her very first class photo.
Posted by Lucy's Mama at 4:45 PM
Friday, September 6, 2013
In May, we took a trip with Lucy to Chicago - our main reason was to see the Sesame Street Live performance. You can read all about how that went here. Needless to say, not the bright spot we were hoping that seeing Sesame Street characters would be for her.
I found out that Sesame Street Live was going to be headed to La Crosse in August, with their brand-new show. I wanted Lucy's experience with it to be so much more than what it had been, so I contacted the La Crosse Center, to see if they were wheelchair accessible, and if we could be seated in an area where Lucy would be able to see the stage.
I received a very nice reply back from Art Fahey, saying that they could accommodate her, and then corresponded with Nikki Kimpton, setting up ticket purchasing and arrangements. We wanted Lucy to actually get to meet some of the characters this time, so we got the Sunny Seats package, and started to plan our little trip.
I was feeling a bit nervous; the trip to La Crosse was going to be a longer drive than the one to Chicago, but with a much less harried pace. We were planning no other activities, and told no one about our trip beforehand. We wanted it to be laid back and casual, and didn't want to tax Lucy too much. Of course, then we discovered that the days we were meant to go, it was supposed to be insanely humid, with the heat index climbing to over 100 degrees. We decided to book an extra night, and drive Lucy in the night before, to avoid the ridiculous temperatures. Our van's AC isn't exactly frigid, and Lucy does not do well in the heat. At all.
We made the drive uneventfully and settled in for the night. The next day we took it easy in the hotel, and went out for a little dinner and ice cream.
Then we headed back to get ready for the show at La Crosse Center, which was next door to our hotel.
Posted by Lucy's Mama at 3:22 PM