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Today I realized that Sophia had been diagnosed one year ago, exactly. I think our process is summarized in my post about Sophia's Journey. It doesn't give all of the nitty-gritty details, but you can see in general how our lives have changed.
If feels like it's been a lifetime, not just a year. So much has changed, some good, some bad.
Some of the bad:
I really don't like thinking about every thing that my kid eats, and if her hopping around the living room is enough to bring her low, and more than that I really like sleep, and I don't get much of it sometimes. I don't like having a pit in my stomach at night wondering if I made the right call to give a correction at 11 pm and if I'll hear her if she has a seizure in her bed. Sigh...
Having a child with a chronic problem affects the other children as well. It grieves Joe and I sometimes when we look at Jossie, who already has the disadvantage of being middle child, but now has to also compete with her older sister getting special attention for not just accomplishing everything first, but also for having health problems. Those health problems require immediate attention often, so Jossie has learned to play alone a lot. She's learned to be the peacemaker already. She's so sweet, and she just melts when you praise her and notice her having accomplished something.
One other thing...I have become a total germ freak! And I've been so kind as to spread my paranoia on to Sophia. With the threat of hospitalization for her with every little illness, I'm a bit cranky with yellow-snot kids with coughs at church and school. I never get how that seems "not contagious" to a mom when they're dropping off. I used to think, oh well, the colds just boost our immune system, and maybe we'll all be healthier as we get older. But, now that things have changed, I am so anxious in public. I am pretty much refusing to go to the grocery store with my kids now (at least during the cold/flu season). I don't like feeling this way, but I don't like feeling like a cold could put her in the hospital either. Every time she has the slightest drainage or even allergy attack, her blood-sugar is in the 300's and 400's, and correction doses don't help. It makes me a little fruity. What was a common cold, now could cause my daughter's kidneys or eyesight to fail. Ugh! So, we pray daily for protection and try to tell ourselves to "chill out" and go out in the world...at least a little. But, I promise I germ-x them the second we get to the car. (Oh, and I got to tell all of Tulsa that on a news interview recently. Totally embarrassing, but I'll post on that one later).
Some of the good:
We've become a very tight family (as in close-knit). Not that we were a distant family at all, but an issue like this makes you lean on each other. Sometimes it really stinks that we're so good together, like when Joe and I want to go out...we don't have a lot of people who can do what we do, so we don't have the ability to have much space from here. But, the real positive for that is that I have realized how blessed I am with this amazing husband of mine. He is so fantastic with it all. He loses so much sleep taking care of any and all of the kiddos in the middle of the night. I do to, but I have so much peace knowing I'm not alone on those hard nights. He has been through so much stress with his business (not all bad, but growing a business is stressful...that's just how it goes), but he still always keeps us as his main priority. He comes home for dinner, he helps with bedtime, he very occasionally hangs out with a friend at night, but he so rarely does anything for himself. Anyway, I've already done my post on him, but it is part of the good that has come from this part of our lives. He helps me remember that we serve a Sovereign God who can take much better care of my family than I, and who's plans include a prosperous life for my children.
We've worked really hard at not being victims of this life situation. Sometimes we fail in that endeavor, but overall we've tried to keep the attitude and to teach it to Sophie, that we are still blessed and that our lives are still good even with this obstacle. Her doctor told me recently that Diabetics who's blood-sugar is well-controlled have a 1% chance of developing the typical bad side-effects of diabetes. Big sigh of relief... Sometimes the day-to-day realities of diabetes sucks, no doubt, but if we keep it a healthy focus, as in the focus is to keep her healthy, but don't obsess or wallow in self-pity, I think we'll all come out better for living through this. I still would take it away from her in a heartbeat, but since that isn't my choice, I want to see us all matured and growing in faith for having gone through this.
I think this year has caused Sophia and Jossie to really learn to pray. They are starting to "get it" that Jesus is listening, that He cares, and that He really likes them. Sophie said she "heard Jesus" the other night in her prayers. She said it wasn't a voice, just a feeling that made her have "a happy cry feeling inside." sigh....
Jossie prayed the other night for all of the poor people "that we can really love them and help them Jesus." sigh....
Other good news...We forced ourselves in September to take the vacation we've been dreaming of for a while....Disney World! As you can see here, Sophia and Jossie were thrilled to meet Princess Belle. Many squeals, waves, kiss blowing, and twirls occurred in Disney. I was even a little star-struck, I must admit. The princesses were so in character, and sweet, and so focused on the kiddos. And my girls are pretty sure they were the favorite little girls the princesses ever met. I will post more on Disney soon, but this seemed like the more timely post.
Along with Disney, we've learned in the last few months to just go with the flow a bit. Being on the pump really helps with that, because she can have carbs whenever it's convenient, and not just centered around meals or a scheduled snack. Here below, she's enjoying picking fresh peaches (and sampling a few bites) at an orchard near my mom's house over the summer.
Here is the blow-up pool/slide that we got for the girls' birthday party. They all loved it, though Norah never really warmed up to the slide. Sophie loved unplugging her pump and just being a normal kid for a couple hours at a time. She had a few lows while playing on it, but luckily it's in our back yard, so it was quickly remedied.
Here she's pictured in her JDRF walk t-shirt. It said "The Sophia and Forest Team. Fighting Diabetes Like Superheroes." We had about 40 people on our team, and raised almost $2000 as a team toward research for a cure. I felt so blessed to have such supportive family and friends. So many people really wanted Sophie to know they thought she was so mature and brave for all she has overcome.
So, what else is good? Well, I think this year has really forced us to remain at the foot of the Cross. That isn't a bad place to be. It's a place of vulnerable trust. A place of helpless faith. A place of strength, pain, surrender, and peace. It's a place where we don't have to have all of the answers, but where we know that intimacy with our God is The Answer.
