Seizure-land

Well, we've officially changed addresses and made a full move to Seizure-land. Rebecca (Becca) turned 6 in January and had already had an "episode" or two. As we have gone down several avenues with our hands out in front of us trying to feel for an answer, we are on seizure meds (Trileptol), getting a g-tube and we're having a sleep study done next week, which I already believe will show serious problems. I have got to figure out a way to get some back-up oxygen in the house for when she has trouble. I was told her oxygen levels have to dip to 80% to have insurance cover extra oxygen at home. I'm sure she's been there, she goes blue for goodness sake!, but no one has been there with an oximeter in their hand when she does it.

We sailed through the first 5 years, we really did. The worst thing we went to the doctor for was a bad cold or a urinary infection. Every year in school we see big improvements in her awareness and initiating communication and just overall happiness. Every little thing makes her so happy! And then these nasty old seizures come along and ruin everything. And after reading and researching on my own, there's no turning back, no miracle cure. It will just slowly get worse and worse, I know that. I don't have to give in to it, but I do have to accept it. Last night she wasn't feeling good, I have no idea why- maybe the various chemicals coursing through her body were making her uncomfortable, but as soon as I went in to her room and talked to her, she smiled! She smiled that "I know you're here Mom and you love me... please make it go away." I can't always make it go away and that is the number one hardest thing for me. Walking through public, myriads of doctor appointments, even procedures don't faze me anymore; it's the look that she gives me- that perfect childlike trust that everything will be better if Mom is there. But I'm not magic, I'm not a miracle worker and I can't reach in and fix things even though I know what could be "fixed."

Most of the time I feel like Becca really gets a lot out of life. Her sisters adore her, she's Daddy's little girl (and Mommy's!), she loves music and being outside- we can tell that she's happy and that she loves us back. The thought of that slowly leaving her just socks me in the stomach, if you know what I mean. Some of you do, all to well. I guess I just keep giving her as much love and joy as I can so that I can fulfill the assignment that God gave me of being her Mom. I suppose I'm a little too old to stomp my feet and pout about it, better just dig in my heels and try to enjoy the ride!

Sometimes I feel like my plane got re-routed to Saturn instead of even Holland!

Comfort

Today it looks gloomy and stormy outside. It's windy and the clouds have that "drawn with charcoal and then brushed down with a paper towel" look. So, I’m thinking it might actually rain today.

I LOVE rainy days! Maybe it's because I was born in April, but mostly I think it's because of the way it seems to wash everything and leave it fresh and clean smelling. I just love the way it smells right before it rains, while it's raining and after it's done. I also love that it is an excuse to stay inside, hibernating.

I'm wearing the closest thing I have to sweats, having banned actual sweats because I couldn't stop wearing them... in public. They're knit and they have a nice shape and they're comfortable. I'm wearing the shirt my sister sent to me from the college in their town that her husband is going to. I miss her SO much and she sent me this shirt- emotional comfort. The only reason I have anything on my feet was so I could walk Becca out to the bus and those would be the bright pink flip flops I tied scraps of pink and yellow fabric to at my favorite reunion last summer. So, basically I'm dressed as a housewife, not the competitive, "my highlights must be highlightier than yours," just the "I love my kids and I've had a rough week full of doctor appointments and running around and I just wanna stay home" kind of stay at home mom day.

So, what am I going to do today on my day of comfort? I'm going to sew. Wanna know why? There is something about the things I sew that bring a different kind of comfort. I love knowing that the child that will wear the big sized onesies I'm making will have a way to look like everyone else while still having a way to get the food into him the way that he needs it to be. When he sits in his wheelchair or rolls around on the floor, his shirt will stay tucked in. To his Mom, I know that's a big deal. I love knowing that the simple toys I make that are full of texture will bring joy to someone who doesn't always care that toys make noise because they all feel like plastic, but a book full of textured fabrics is fun to feel and colorful to look at. I love the coats and jackets that I make keep kids warm and dry- including their laps, because when you sit in a rain storm, your lap absorbs the most water!

I rarely sew for myself in the physical sense of sewing something for myself. I do sew for myself in the "pay it forward" sense that I'm making something that will make someone else happy. And when they are happy, so are the people around them and so on and so on. So, really I get my gratification when others get theirs from something I've made. I hope that's not too selfish, because I LOVE it SO much!

Pink Milk

Am I asking too much of this milk? A little half and half, a lot of whole milk- the bottle seems mostly full. Then I add a half a packet of Instant Breakfast, a few tablespoons of a constipation releiving substance and some spoonfuls of pink flavoring. I'm no scientist, but isn't there only so much suspension that can happen in a liquid?

Luckily it all fits because it does it's job and she REALLY likes it!