Kindergarten starts the Wednesday after Labor day. Bo will be in the AM class at the school down the street. There was no fanfare in that announcement from the school district. Just a matter of fact letter stating that we lived too close for bussing.
Send in the clowns.
I started the process for Bo's placement in January. We had 3 meetings, countless emails and several terse phone calls. I consulted a lawyer, other special needs kids' advocates/parents, and sent reference literature.
There will be a 504, and IEP will be written if needed, a nurse will be in the room. We will get an emergency medical supplies kit to have on campus.
We will start going to bed earlier and waking up with more structure. I am still a little dazed.
Send in more clowns.
Saturday, August 25, 2012
Thursday, August 16, 2012
The Unsettled Indecisiveness of ThisMoment
I keep waiting for things to be settled. For things to be known before I send another post of electrical impulses into the universe forever. A Morse code of pixels and punctuation.
School starts in a few short weeks and we still don't know where Bo is going to school for sure. But really, do we know anything about tomorrow for sure? I want guarantees. I want to be pandered to. I want someone to sooth my anxiety and fear. I'm certain the superintendant is not really qualified for that.
School starts in a few short weeks and we still don't know where Bo is going to school for sure. But really, do we know anything about tomorrow for sure? I want guarantees. I want to be pandered to. I want someone to sooth my anxiety and fear. I'm certain the superintendant is not really qualified for that.
Wednesday, August 8, 2012
Happy Trails, Laura the Elephant
Turns out that Laura retired, so I didn't have to face the question of whether or not to ride the elephant. Bo enjoyed all the carnival games, and Ahn enjoyed all the sno-cones. The company carnival was a blast and they will be sure to enjoy it even more next year.
Wednesday, August 1, 2012
My Peace, I Give to You... or at least, my toes
There's a part where the priest quotes, "my peace, I give to you." I am rocking A and singing lullabies when I look down at her leg draped across me, and her toes, parallel to mine. And I realize that my joy at seeing this resonance in the smallest feature between us, our toes, is not about seeing myself in her (since we really look nothing alike).
It is the comfort of knowing that she can see me in herself. For as long as she has those toes, she will have a part of me. She may never feel the same way about Jesus as I do. She may never know how I feel about my toes (grudgingly appreciative, they are not cute, but are so so important for balance!). She will probably think my ideas on politics and literature a drippy. But she can look down and know KNOW that there is a very literal part of me that she will carry with her until she too returns to dust.
Of all that is seen and unseen (toes, and DNA, in this case).
My toes, I give to you.
It is the comfort of knowing that she can see me in herself. For as long as she has those toes, she will have a part of me. She may never feel the same way about Jesus as I do. She may never know how I feel about my toes (grudgingly appreciative, they are not cute, but are so so important for balance!). She will probably think my ideas on politics and literature a drippy. But she can look down and know KNOW that there is a very literal part of me that she will carry with her until she too returns to dust.
Of all that is seen and unseen (toes, and DNA, in this case).
My toes, I give to you.
Monday, July 30, 2012
We Love a Happy Ending
Bo had his DEXA bone scan and GI clinic today. I didn't go. I know! I was paralyzed with anxiety, even with all my meds, but I refrained from going. And guess what, guys? No one is dead (well, in my family)!
I thought I might be dying of breast cancer, but then I realized that since I only weaned my daughter 6 months ago (don't judge, ok? she was eating solids, and quite a bit, I might add, but was still hanging on; then, suddenly, she was over it!), that milk action was still hanging around.
So Bo is doing great, Ahn is completely boob-independent, I get to sleep through the night (bonus!), and Jose's started playing music again. Yay! I'm not dead. Probably can't do that cash-out refi to finance the anxiety-inducing plumbing thing, but, meh. That's small potatoes. Since I'm not dead, I can continue to work, get paid, and pay all the contractors to keep my house from crumbling into a pile of dust. AND... the weather won't climb above 90 degrees this week!
No drama, friends. That is a glorious thing.
Is it inhumane and colonialist to want to ride the elephant at the company picnic? Don't answer that.
I thought I might be dying of breast cancer, but then I realized that since I only weaned my daughter 6 months ago (don't judge, ok? she was eating solids, and quite a bit, I might add, but was still hanging on; then, suddenly, she was over it!), that milk action was still hanging around.
So Bo is doing great, Ahn is completely boob-independent, I get to sleep through the night (bonus!), and Jose's started playing music again. Yay! I'm not dead. Probably can't do that cash-out refi to finance the anxiety-inducing plumbing thing, but, meh. That's small potatoes. Since I'm not dead, I can continue to work, get paid, and pay all the contractors to keep my house from crumbling into a pile of dust. AND... the weather won't climb above 90 degrees this week!
No drama, friends. That is a glorious thing.
Is it inhumane and colonialist to want to ride the elephant at the company picnic? Don't answer that.
Wednesday, July 25, 2012
Normal and neighborly
We have made it through these white-hot days. I pray this is the worst of it. The reality of another hospitalization is sobering, to say the least. But we celebrate today, literally, and turn a blind eye to the misfortune evaded, again.
Neighbors comment how fast you and your sister have grown, admonish us to enjoy. Both true. But I cringe, because both infancies were years that I do not cherish, and try not to remember. Days full of mind-crushing fear, exhaustion, anxiety, sleep deprivation, bearing witness to and not having the authority to stop any of the pain or fear you lived through. And waiting, in terror, for your sister, to maybe develop symptoms of the same. For two years. The pain of those excruciating days may be some kind of foreshadowing, the culmination of which I do not look forward to, nor do I cherish. Those days are behind us now, like the sweet springs that feed our lakes.
I only have an appetite to enjoy each moment now. Each hot, sweaty moment. Each long-winded story. Each non-sensical pun. Each punchline-less joke.
How about this? I cherish each beautiful moment of your infancies for the wonderyears we are now enjoying. But I do not long for any of those days. Luckily we can't, and I wouldn't, wish them back.
Our secret: 200 cc of half normal saline to be administered at the hot and sleepy siesta, or earlier, if needed. Lots of air conditioning. A fan at night. And baths.
Neighbors comment how fast you and your sister have grown, admonish us to enjoy. Both true. But I cringe, because both infancies were years that I do not cherish, and try not to remember. Days full of mind-crushing fear, exhaustion, anxiety, sleep deprivation, bearing witness to and not having the authority to stop any of the pain or fear you lived through. And waiting, in terror, for your sister, to maybe develop symptoms of the same. For two years. The pain of those excruciating days may be some kind of foreshadowing, the culmination of which I do not look forward to, nor do I cherish. Those days are behind us now, like the sweet springs that feed our lakes.
I only have an appetite to enjoy each moment now. Each hot, sweaty moment. Each long-winded story. Each non-sensical pun. Each punchline-less joke.
How about this? I cherish each beautiful moment of your infancies for the wonderyears we are now enjoying. But I do not long for any of those days. Luckily we can't, and I wouldn't, wish them back.
Our secret: 200 cc of half normal saline to be administered at the hot and sleepy siesta, or earlier, if needed. Lots of air conditioning. A fan at night. And baths.
Thursday, July 12, 2012
a four letter word
HOPE
This was imprinted on the mellon colored band. Aside from these interest-group rubber bands, I haven't been able to wear necklaces or bracelets for the better part of 5 years. So I put it on and glanced at it, remembering the sweet family whose child, not much older than Bo, graciously gave it to him.
We were flying back from our first and only Oley conference, a conference for consumers and medical professionals of TPN. The airport was a nightmare with Bo and his diapers, and lines, and vomiting and sensory overload. He was screaming or uncomfortable, and I was sweating and trying to manage his discomfort. We were trying to get dressed and put back together after being frisked within an inch of nudity and fully unpacking. This activity seriously took the better part of 20 minutes.
As I kept an eye on Bo while trying to compose ourselves, another family came through the scanner to retrieve their things from the conveyer belt. Their child came close enough to Bo for him to see her bracelet. She immediately took it off and offered it to him. There was no hesitation. I don't think he was sure about giving it back, and she was uncertain about giving it away, but when she reached to retrieve it, Bo protested and her parents asked him to keep it. Only after they had disappeared down the concourse, when I remarked how kind they were, and what an unexpected reprieve from our TSA experience that was, as I was sending up thanks for the small kindness, did I see it was embossed with "HOPE."
This was imprinted on the mellon colored band. Aside from these interest-group rubber bands, I haven't been able to wear necklaces or bracelets for the better part of 5 years. So I put it on and glanced at it, remembering the sweet family whose child, not much older than Bo, graciously gave it to him.
We were flying back from our first and only Oley conference, a conference for consumers and medical professionals of TPN. The airport was a nightmare with Bo and his diapers, and lines, and vomiting and sensory overload. He was screaming or uncomfortable, and I was sweating and trying to manage his discomfort. We were trying to get dressed and put back together after being frisked within an inch of nudity and fully unpacking. This activity seriously took the better part of 20 minutes.
As I kept an eye on Bo while trying to compose ourselves, another family came through the scanner to retrieve their things from the conveyer belt. Their child came close enough to Bo for him to see her bracelet. She immediately took it off and offered it to him. There was no hesitation. I don't think he was sure about giving it back, and she was uncertain about giving it away, but when she reached to retrieve it, Bo protested and her parents asked him to keep it. Only after they had disappeared down the concourse, when I remarked how kind they were, and what an unexpected reprieve from our TSA experience that was, as I was sending up thanks for the small kindness, did I see it was embossed with "HOPE."
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