Raising children with neurological disorders and realizing, after all these years, that I've only been "passing for normal"
Tuesday, December 29, 2009
Wednesday, December 23, 2009
No Christmas parties here
Because of the snow, Miranda missed all her school days this week which means she had no holiday party with her classmates, something we were both looking forward to. I took her to play at Chick-Fil-A yesterday for lunch to try to cheer her up. Then, as soon as we had gotten home yesterday afternoon, the nurse called to say Alex had what appeared to be the 24 hour stomach flu and could I please come and pick him up? So, he is home today, missing his class party as well. I was able to take in the rest of the fudgey presents for Miranda's teacher and aides and handed them to the nurse when I picked up Alex, who promised to distribute them for me, and I was smart enough to do the bus driver and bus aides yesterday morning, so I am all done with school personnel. But it just didn't go as planned this year.
Alex is starting to act like himself this afternoon and he even ate a few cheerios, but he was very wakeful last night so both Marshall and I are living on caffeine today. Now that a full night's sleep has become a habit, I miss it even more.
Hopefully, we will all be well enough to attend the Christmas eve service tomorrow. Lord willing.
Alex is starting to act like himself this afternoon and he even ate a few cheerios, but he was very wakeful last night so both Marshall and I are living on caffeine today. Now that a full night's sleep has become a habit, I miss it even more.
Hopefully, we will all be well enough to attend the Christmas eve service tomorrow. Lord willing.
Monday, December 21, 2009
An Even Bigger Pile of Snow
We had approximately 2 feet of snow dumped on us on Saturday which is a bit much for most locals to deal with. It took us almost 2 hours to dig out the cars yesterday (of course, for most of the time, the children were helping). Anyway, we have lots more pictures to post of the children being cute while covered with snowsuits and snow. They are both out of school today (after cleaning the cars off myself, I'm really glad it's not my job to clean of dozens of school buses) but hopefully, school will be on as usual tomorrow since it's Miranda's last day and Christmas party. Alex's party is Wednesday. The pictures are here.
I spent much of Saturday making fudge for Miranda's teachers and brownies for Youth Group (which was also canceled yesterday--it's the first time in memory that all activities scheduled at church were canceled for the entire weekend) so am going to spend most of the next two days distributing the fudge and brownies. I love to bake but my rule is to make it and give it away. Marshall took a big platter of fudge in to work with him today, which makes his co-workers happy.
Of course, all the snow means the leaves will not be picked up this week. In fact, if the snow lingers because of cold weather, the leaves may not be picked up until spring. Of course, a white Christmas would be kinda cool.
I spent much of Saturday making fudge for Miranda's teachers and brownies for Youth Group (which was also canceled yesterday--it's the first time in memory that all activities scheduled at church were canceled for the entire weekend) so am going to spend most of the next two days distributing the fudge and brownies. I love to bake but my rule is to make it and give it away. Marshall took a big platter of fudge in to work with him today, which makes his co-workers happy.
Of course, all the snow means the leaves will not be picked up this week. In fact, if the snow lingers because of cold weather, the leaves may not be picked up until spring. Of course, a white Christmas would be kinda cool.
Thursday, December 17, 2009
A Really Big Leaf Pile
I am still in denial that Christmas is next week. Every day seems to have a list of things that MUST be done today, because tomorrow will be too late. For instance, this morning was my chance to finish the leaf-blowing in the front yard as leaf pickup by the township starts Monday. I haven't managed to do it before now because of rain or snow or the general unavailability of someone else to watch the children while I played with the leaves in the front yard. This morning, I put the children on the bus, took a shower, got dressed and went outside. I managed to finish 15 minutes before Miranda's bus. I am just praying the wind doesn't blow too many of them back up in the yard. It's not a perfect job, not even up to my usual high standards of most of the leaves, but it's enough of them to qualify for a really big leaf pile and the rest will just have to disintegrate into the yard. I still have some in the backyard to rake up and bag, but that can be done anytime as leaf-bags get picked up regularly while leaf piles only twice a year.
Marshall is home from work this week Wed-Fri as he is rebuilding a Volkswagon Beetle engine for his pretty little 1972 Super. I am finding a few other things around the house for him to do but mostly, he works on his stuff out of sight.
We increased Alex's anti-anxiety medication last weekend so it's been a rocky week for him. I'm really praying next week is better, but we knew up front that some side-effects would pop up until he has completely adjusted to the new dose. Miranda is her usual bouncy self. Cute but pesky.
I should really be working on the Christmas letter, but I'm going to run to the grocery store instead.
Marshall is home from work this week Wed-Fri as he is rebuilding a Volkswagon Beetle engine for his pretty little 1972 Super. I am finding a few other things around the house for him to do but mostly, he works on his stuff out of sight.
We increased Alex's anti-anxiety medication last weekend so it's been a rocky week for him. I'm really praying next week is better, but we knew up front that some side-effects would pop up until he has completely adjusted to the new dose. Miranda is her usual bouncy self. Cute but pesky.
I should really be working on the Christmas letter, but I'm going to run to the grocery store instead.
Monday, December 7, 2009
Constant Search for Balance
I was talking to my husband last night about why I've been feeling so dislocated. First, we have been sick almost continuously since, like, mid-October. (It's been so long I can't even remember when it started!) Usually, we get one cold in the house, share it around, and then we're good for a couple of months, when the process starts all over again. I thought we were all finally well again (except for Miranda & my allergies) when Alex woke up this morning coughing. Now, I let him play out in the snow this weekend (we had our first snow Saturday afternoon of maybe half an inch) but made sure he was all bundled up for it. However, after listening to his cough this morning, I'm not sure my efforts were sufficient.
Then, my parents just left after a long and wonderful visit, which included a long weekend away for Marshall and myself. If there's anything to throw me off my game, it's leaving the house without my children attached to me. Not bad, per se, just relatively unfamiliar. We did return feeling remarkably refreshed last Monday afternoon but I can't shake the feeling I'm still playing catch-up.
Out of curiosity, I just looked up the definition of balance and the most striking description in the rather long list is "mental and emotional steadiness." Now, perhaps December in the USA isn't the best time to be searching for balance amidst the rush of holiday parties and Christmas gifts (SO much fudge to make!) but my life has been all about managing Miranda's transitions this fall and now that she's settling in to school in Miss Barbara's class, I am finding I still need to make changes in how I approach my own time. True, both children go happily onto the bus at 8:20 am (she returns about noon, he comes home about 3:30) 5 days a week except for holidays and early dismissal days so I, technically, have my mornings free. Instead of running a zillion errands on the weekends and dragging Miranda grocery shopping with me in the mornings, I can now spread out the stops and appointments while they are both at school. What I am finding more difficult to "balance" is the emotional and logistical energy required to keep up with Miranda's schooling requirements.
This is Alex's fourth year at Springville and even though Miss Kim is our third teacher, the process and program has been similar enough from year to year that I've learned how to keep up with the relationships I need to maintain with his teacher, therapists, aides, case worker, bus driver, and bus aide (10 people in all and they are all wonderful!) When Miranda started, the number of relationships that needed maintenance nearly doubled. A new teacher, two new aides, two new therapists, a new case worker, the same bus driver (God bless Miss Linda!) but a new bus aide in the afternoon. That's 7 more people who need to know me and I'm finding it all a little overwhelming. Or, at least, I'm trying to find that new balance and develop a new pattern for staying in communication with all of them. It's a good thing I'm a logistics expert. :)
Then, my parents just left after a long and wonderful visit, which included a long weekend away for Marshall and myself. If there's anything to throw me off my game, it's leaving the house without my children attached to me. Not bad, per se, just relatively unfamiliar. We did return feeling remarkably refreshed last Monday afternoon but I can't shake the feeling I'm still playing catch-up.
Out of curiosity, I just looked up the definition of balance and the most striking description in the rather long list is "mental and emotional steadiness." Now, perhaps December in the USA isn't the best time to be searching for balance amidst the rush of holiday parties and Christmas gifts (SO much fudge to make!) but my life has been all about managing Miranda's transitions this fall and now that she's settling in to school in Miss Barbara's class, I am finding I still need to make changes in how I approach my own time. True, both children go happily onto the bus at 8:20 am (she returns about noon, he comes home about 3:30) 5 days a week except for holidays and early dismissal days so I, technically, have my mornings free. Instead of running a zillion errands on the weekends and dragging Miranda grocery shopping with me in the mornings, I can now spread out the stops and appointments while they are both at school. What I am finding more difficult to "balance" is the emotional and logistical energy required to keep up with Miranda's schooling requirements.
This is Alex's fourth year at Springville and even though Miss Kim is our third teacher, the process and program has been similar enough from year to year that I've learned how to keep up with the relationships I need to maintain with his teacher, therapists, aides, case worker, bus driver, and bus aide (10 people in all and they are all wonderful!) When Miranda started, the number of relationships that needed maintenance nearly doubled. A new teacher, two new aides, two new therapists, a new case worker, the same bus driver (God bless Miss Linda!) but a new bus aide in the afternoon. That's 7 more people who need to know me and I'm finding it all a little overwhelming. Or, at least, I'm trying to find that new balance and develop a new pattern for staying in communication with all of them. It's a good thing I'm a logistics expert. :)
Thursday, December 3, 2009
Is it really December?!
So, the grandparents have left after a wonderful visit (lots of new pictures to see starting here) and life is about to get back to normal. I think. I'm still a little groggy from my weekend at the shore with Marshall while my parents rode herd on our two adorable, high-maintenance children. At a nice little place in Brigantine, we relaxed and watched Torchwood Series 3 and I was finally able to start my next cross stitch project. I haven't stitched in at least 6 months and it was a real joy to finally set all the materials out (it's been kitted for months!) and actually start stitching!
The children are, for the most part, doing well in school. Miranda had a long Thanksgiving break (more than a week) so her transition back to school has not been completely smooth, but it's still a new thing to her so I'm not that concerned.
Marshall got bronchitis right before my mother arrived on the 19th--his doctor told him he was one day away from pneumonia!--but has finally stopped coughing and should have his wind back soon. He missed a lot of work days though with the illness and planned vacation after Thanksgiving, though, so is slogging through quite a pile in his inbox.
There was a terrific storm last night, but it is warm and clear again today, which doesn't feel like December at all. I remember the one December the ground was frozen for the whole month with ice several years ago (I think it was 2004, when Alex was young) and our poor dog had a path to the back fence while the rest of the yard was covered with frozen snow. Not this year. It's strangely glorious.
The children are, for the most part, doing well in school. Miranda had a long Thanksgiving break (more than a week) so her transition back to school has not been completely smooth, but it's still a new thing to her so I'm not that concerned.
Marshall got bronchitis right before my mother arrived on the 19th--his doctor told him he was one day away from pneumonia!--but has finally stopped coughing and should have his wind back soon. He missed a lot of work days though with the illness and planned vacation after Thanksgiving, though, so is slogging through quite a pile in his inbox.
There was a terrific storm last night, but it is warm and clear again today, which doesn't feel like December at all. I remember the one December the ground was frozen for the whole month with ice several years ago (I think it was 2004, when Alex was young) and our poor dog had a path to the back fence while the rest of the yard was covered with frozen snow. Not this year. It's strangely glorious.
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