I generally try to focus on the positive things that are part of my life. Sometimes, though, I feel like I need to acknowledge the not so great things. Lately I've been feeling like those not good things are intruding themselves into my thoughts too often. So here I share some of the less good, dare I say crappy things that are part of my life with Hillary.
18 + years of one-sided conversations with my child, trying to decipher her cries, grunts, moans, squeals, and whimpers. Some days I try everything that's worked in the past, checked everything I can, and still am left guessing.
22 years of changing diapers. (I'm counting the few years from my first child in that number)
Constantly worrying that the insurance will deny coverage of supplies or treatment for my daughter, and the fight that will ensue over phone, fax, and mail.
Hearing people us the "R" word and knowing they find nothing wrong with it.
Trying to get my daughter in her wheelchair into buildings and trying to get through crowds with her too.
Meeting friends or going out with my husband only after making sure my daughter will be or is cared for--she can never be left alone.
Knowing that there are people who refuse to work with my daughter.
NEVER having a day off from my main job of caring for my daughter, even if I'm sick or injured. I've even put her on the bus, gone and had surgery, gotten home before she got home from school, and still fed and medicated her at bedtime.
Tomorrow I'll go back to focusing on the positives, and I'll appreciate them so much more after acknowledging the negatives today. If we never felt sad, how would we know how good happy feels?
Friday, July 29, 2011
Thursday, July 21, 2011
Filling Out Forms
If there’s one thing I can’t stand doing (there are actually many things I can’t stand doing) it is filling out forms pertaining to my daughter. It’s been almost 19 years and I’m sick of answering the same questions over and over. Many of the questions get the old N/A in the blanks because they don’t apply to Hillary’s abilities. The past couple of months I’ve had a number of forms to fill out, and I kind of feel sorry for the people who have to read them because I’m not taking care to write legibly. I’m losing patience for this stuff!
When Hillary was an infant, there was still a lot of hope that she wouldn’t be too far behind her peers. Even with her diagnosis of Aicardi Syndrome we felt that her chances of being only moderately developmentally delayed were at least 50/50. HA! Always the optimist, we went from specialist to specialist, filling out forms, convinced that someone would find something that could be “fixed” and she would begin catching up. Even though her pediatrician kept warning, in his kindest manner, that the gap would get larger the older she got. I loved Dr. Berger, he was always so supportive. That is a subject for another day.
By the time she was about 6 months old it was apparent that things weren’t going quite as well as we had hoped, but with a referral for Early Intervention Services, all things still seemed possible. More forms! All those questions about birth weight, length, my pregnancy, apgar scores, milestones, likes, dislikes, etc, were answered in my best handwriting. Then there were the “intake interviews” where you get to sit there with your child talking to the staff of therapists, nurse and social worker and answer all the questions again in person. Fun! As things went along and we found out about different assistance programs, (known in the political arena as “entitlement” programs), there were more forms! These generally included requests for financial information. As if it’s not enough to constantly report your child’s shortcomings, now you have to look at your tax forms. I was (and still am) always torn between hoping we qualified and being afraid we’d qualify. It’s a double edged sword.
Of course, I would be remiss if I didn’t mention insurance forms. They’re fun, too, but in a different way. They don’t usually need much detailed information, but every now and then they want to be sure that our daughter is still disabled. I wish they would have just looked up Aicardi Syndrome, but I suppose they have a policy or something about checking to make sure they’re not being scammed.
When Hillary turned 3 it was time to get her into the local school district. Yay! More forms and another round of interviews with social worker, therapists, teachers, and learning specialist where we went over the same information again and again. Then we had to look at programs, and once we decided where we wanted Hillary to go there were forms from that school. And so it continues.
Lately we’ve been applying for programs available to our daughter once she turned 18, and taking her to a new doctor and wheelchair clinic. I confess that sometimes when I’m filling out forms it’s late in the day (evening) and I’m a bit punchy. So it was that by the time I started filling out the doctor’s form I was not in the proper frame of mind. Questions such as: “Were there problems during your pregnancy?” and “When did your child first roll over?” just about did me in, and when I saw the one asking for her apgar scores I kind of went crazy and wrote the first thing that came to mind which was “I don’t remember, it was almost 20 years ago!” And honestly at this point I don’t believe it matters. It doesn’t matter now why Hillary is the way she is. Just treat the current problem and be done with it. I do understand that the doctors need this information in the interest of science and not missing anything, but for this parent the point is moot.
So that’s the latest thing about being the parent of a special needs child that’s bugging me. I wonder, why can’t they just have one universal form that I could fill out once, update occasionally, and e-mail to the doctor or agency that needs it? It would save me from being hit in the stomach with everything she is not. I prefer to focus on who she is
When Hillary was an infant, there was still a lot of hope that she wouldn’t be too far behind her peers. Even with her diagnosis of Aicardi Syndrome we felt that her chances of being only moderately developmentally delayed were at least 50/50. HA! Always the optimist, we went from specialist to specialist, filling out forms, convinced that someone would find something that could be “fixed” and she would begin catching up. Even though her pediatrician kept warning, in his kindest manner, that the gap would get larger the older she got. I loved Dr. Berger, he was always so supportive. That is a subject for another day.
By the time she was about 6 months old it was apparent that things weren’t going quite as well as we had hoped, but with a referral for Early Intervention Services, all things still seemed possible. More forms! All those questions about birth weight, length, my pregnancy, apgar scores, milestones, likes, dislikes, etc, were answered in my best handwriting. Then there were the “intake interviews” where you get to sit there with your child talking to the staff of therapists, nurse and social worker and answer all the questions again in person. Fun! As things went along and we found out about different assistance programs, (known in the political arena as “entitlement” programs), there were more forms! These generally included requests for financial information. As if it’s not enough to constantly report your child’s shortcomings, now you have to look at your tax forms. I was (and still am) always torn between hoping we qualified and being afraid we’d qualify. It’s a double edged sword.
Of course, I would be remiss if I didn’t mention insurance forms. They’re fun, too, but in a different way. They don’t usually need much detailed information, but every now and then they want to be sure that our daughter is still disabled. I wish they would have just looked up Aicardi Syndrome, but I suppose they have a policy or something about checking to make sure they’re not being scammed.
When Hillary turned 3 it was time to get her into the local school district. Yay! More forms and another round of interviews with social worker, therapists, teachers, and learning specialist where we went over the same information again and again. Then we had to look at programs, and once we decided where we wanted Hillary to go there were forms from that school. And so it continues.
Lately we’ve been applying for programs available to our daughter once she turned 18, and taking her to a new doctor and wheelchair clinic. I confess that sometimes when I’m filling out forms it’s late in the day (evening) and I’m a bit punchy. So it was that by the time I started filling out the doctor’s form I was not in the proper frame of mind. Questions such as: “Were there problems during your pregnancy?” and “When did your child first roll over?” just about did me in, and when I saw the one asking for her apgar scores I kind of went crazy and wrote the first thing that came to mind which was “I don’t remember, it was almost 20 years ago!” And honestly at this point I don’t believe it matters. It doesn’t matter now why Hillary is the way she is. Just treat the current problem and be done with it. I do understand that the doctors need this information in the interest of science and not missing anything, but for this parent the point is moot.
So that’s the latest thing about being the parent of a special needs child that’s bugging me. I wonder, why can’t they just have one universal form that I could fill out once, update occasionally, and e-mail to the doctor or agency that needs it? It would save me from being hit in the stomach with everything she is not. I prefer to focus on who she is
Thursday, July 14, 2011
New Shoes
It is undeniable that a new pair of shoes can make you feel different. There's something about slipping your feet into great new sneakers, sandals, or heels that is an instant pick-me-up. Many women go out shoe shopping when they are feeling a little down in the dumps. Some go out and spend an afternon trying shoes on even if they're not going to buy any.
I tried recently to get some opinions on this subject by posting a question on Face Book. I asked, "How does a new pair of shoes make you feel?" It was an unscientific study and one to which out of about 50 possible responses I received two. One respondent said, "I like anything new." That didn't really answer the question. The other respondent posted some of the lyrics of a song from the movie My Fair Lady: "I feel pretty, oh so pretty, so pretty and witty and fine" with a smiley emoticon at the end. At least that response told me something. Obviously I can conclude that at least one of my friends feels a lightening of mood when wearing something new on her feet.
Having recently purchased several pair of new summer shoes, and having mentioned it in a Face Book status, it was no surprise that the friend who responded with song lyrics requested that I wear a pair of the new footwear to breakfast. I told her that I would wear the cutest pair, to which she replied that she'd look at everyone's feet and know I'd gotten there when she saw them. Of course she loved the blue-and-white-checkered flats with bows on the toes. By the time I got around to doing anything on the computer later that day she had posted a comment about the shoes. Several of my friends then wrote requests to see the shoes,
begging for a picture. Being in a quirky frame of mind I took a picture or two of the now famous flats, uploaded them, and made one of them my profile picture for a day. What a buzz over footwear! My friends were enthusiastic in their praise and admiration. Obviously we are a group with too much time on our hands, either that or we are all in need of somethings non-stressful to occupy our minds for a bit.
Who knew that my choice when I went shopping would brighten the day of so many? I don't generally think too much about what's on my feet. Sometimes,though, when the right footwear calls I must listen. Especially when they're the cutest pair of shoes ever.
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I tried recently to get some opinions on this subject by posting a question on Face Book. I asked, "How does a new pair of shoes make you feel?" It was an unscientific study and one to which out of about 50 possible responses I received two. One respondent said, "I like anything new." That didn't really answer the question. The other respondent posted some of the lyrics of a song from the movie My Fair Lady: "I feel pretty, oh so pretty, so pretty and witty and fine" with a smiley emoticon at the end. At least that response told me something. Obviously I can conclude that at least one of my friends feels a lightening of mood when wearing something new on her feet.
Having recently purchased several pair of new summer shoes, and having mentioned it in a Face Book status, it was no surprise that the friend who responded with song lyrics requested that I wear a pair of the new footwear to breakfast. I told her that I would wear the cutest pair, to which she replied that she'd look at everyone's feet and know I'd gotten there when she saw them. Of course she loved the blue-and-white-checkered flats with bows on the toes. By the time I got around to doing anything on the computer later that day she had posted a comment about the shoes. Several of my friends then wrote requests to see the shoes,
begging for a picture. Being in a quirky frame of mind I took a picture or two of the now famous flats, uploaded them, and made one of them my profile picture for a day. What a buzz over footwear! My friends were enthusiastic in their praise and admiration. Obviously we are a group with too much time on our hands, either that or we are all in need of somethings non-stressful to occupy our minds for a bit.
Who knew that my choice when I went shopping would brighten the day of so many? I don't generally think too much about what's on my feet. Sometimes,though, when the right footwear calls I must listen. Especially when they're the cutest pair of shoes ever.
Sunday, July 10, 2011
Sunday Evening Thoughts
*When someone asks me "Am I right?" after they tell me of something they did or said, they probably already know the answer.
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*There cannot be many better things than to be driving on a sunny summer day with the window down and your hand playing with the wind as you speed down a country road.
`````
*What kids want most from adults is time.
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*Just when I thought I'd left middle/high school behind someone reminds me that some people have never left that phase of life and want to pull those of us who have left back in.
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*It is a beautiful thing to watch a doe with her fawn just before dusk.
`````
*There are many types of tired but the best kind is from having spent the day with family having fun.
``````
*Spending the afternoon with family at their house playing games and eating good food leaves you feeling as if you'd had a mini vacation.
`````
*Pleasant weekends are the best reason to keep going the rest of the week.
`````
*It's easy to lose track of what day it is during the summer.
`````
*There cannot be many better things than to be driving on a sunny summer day with the window down and your hand playing with the wind as you speed down a country road.
`````
*What kids want most from adults is time.
``````
*Just when I thought I'd left middle/high school behind someone reminds me that some people have never left that phase of life and want to pull those of us who have left back in.
``````
*It is a beautiful thing to watch a doe with her fawn just before dusk.
`````
*There are many types of tired but the best kind is from having spent the day with family having fun.
``````
*Spending the afternoon with family at their house playing games and eating good food leaves you feeling as if you'd had a mini vacation.
`````
*Pleasant weekends are the best reason to keep going the rest of the week.
`````
*It's easy to lose track of what day it is during the summer.
Wednesday, July 6, 2011
Time Flies
Where has June gone? Seems like just last week was Memorial Day and now here we are and Independence Day is just a memory! School has ended and I'm just beginning the time warp that is summer. Nice weather constantly beckons me to forget about the overflowing closets, the dust, lint, and piles of laundry. The chair on the deck calls my name, tells me to ignore the cries from the carpets & tiles that need cleaning in order that I may enjoy its view of the sky and trees. The sun fills the window and orders me to bask in it, walk in it, do anything in it. Flowers wink and smile, encouraging me to join them, give them a drink, inhale their sweet fragrance, and watch as bees, butterflies and hummingbirds visit. Spiders show off their web spinning talents to me, daring me to tear them down so they can begin again with great energy in juxtaposition to my lazy wanderings around the yard. Even the jet planes that slide silvery so far overhead call out for my attention as they appear in relief against the deep blue summer sky and play hide and seek in the fair weather clouds. The patio cries out to remind me how much I missed it when it was buried under winter's snows. So I give in, to the detriment of the inside of my house. Soon enough it will be over, Labor Day will have come & gone and school will be back in session and so I will be back at work. Then I'll be asking: where did the summer go?
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