I'm hoping this summer Angela will be busy, busy busy! This is the first year we've opted out of extended school year services (aka summer school for special education students) because I'm hoping we'll be too busy! LOL
Angela will be swimming Monday-Weds mornings for 3 hours. We have Camp Friendship arranged for the first week of August, (we're still waiting to hear if she got into the horse camp, or if she's going to the fishing camp) and one weekend per month at Have A Heart Farm in Wisconsin.
Yesterday I interviewed a new high school graduate to do summer PCA for me. She was planning on going along with us to Angela's swimming lesson so she could see where it was at. Then she mentioned, "I used to swim at *insert name of school here* every day on the Blackline team." HA!!! That's where Angela swims! So when we walked in, it was like Old Home Week for this young lady, as she knew all the swimmers and coaches. So, at least I know she's comfortable around the water! In fact, she was able to show me a shorter way to swimming lessons. LOL She spent 3 hours with us and I got to see how she interacted with Angela, and I think she'll work out just fine for summer. She'll be doing 5 mornings a week, and one evening. I'll just have to figure out how to keep Angela busy and cool during the long summer afternoons!
Friday, May 23, 2008
Wednesday, May 21, 2008
Tuesday, May 20, 2008
I have a new hero
I have a new hero, and his name is Daniel Drinker. Daniel and his brother Will are documenting his journey through life. The good and the bad. If you are a parent of a child with DS, I'm giving you fair warning to not watch without tissues! After you've watched the first video of Dan's first date with Sarah, stick around and read/watch some more of his site.
Monday, May 19, 2008
Changes and stuff
I know that some of you are thinking I'm going to write about "those" kinds of changes, but I'm not. In fact, "changes" is probably the wrong word. If the title bar had more space I'd probably say something along the lines of "We're doing a bunch of stuff around here and it feels like we're making all kinds of changes and spending lots of money to do them" But no...there isn't that kind of room in the title box.
Last summer Angela was able to get a new waiver that allows us to do some things, and get some things that will not only benefit Angela, but also allow Dean and I to learn some better skills when it comes to dealing with the behavioral issues. Half of her waiver went into effect in July, but the other half had to wait until we had some other testing and documentation done, and it just went into effect April 1st. Then it had to sit on my desk for a couple of weeks (ok, almost 4) while I figured out the budget. Ummm...those who know me also know that "numbers" and "budgets" are against my religion. With everything done, submitted, and approved by the Gods at the county and state level, we're finally able to do some things we've really been wanting to do!
The first priority was getting the back yard fenced. Angela is learning new skills every day, and her favorite one is called "Spying on the neighbors". (Now that spring is here, and the trees are getting their leaves this will be more difficult to do.) Now, Angela isn't the little old lady across the street who peeks out her curtains every time you make a move. No, Angela is the little girl at the top of the hill, standing in the picture window, watching all the neighbors garage doors. You see, an open garage door means the neighbors are HOME, which...in her mind...means they're available to play! Oh, and she doesn't want them to play at our house, because our house is boring. She wants to play at THEIR house. She also wants to see what food and drinks they have in their fridge, and what shows are on their TV. I think I've sufficiently warned all the neighbors, but that doesn't stop Angela from just taking off to go visiting! As always she saves her adventures for when I'm in the shower or otherwise indisposed, which gives her a several minute head start, and me a heart attack when I discover she's gone!
On Thursday the "fence guys" will be here to set the posts for the fence, then they'll come back on Monday or Tuesday to put the actual fence up. Let me just say I CAN NOT WAIT! The basement door will open directly into the fenced area. Angela will be able to go in and out at her will, while the front door will either remain locked, or I'm putting one of those beeper thingies on it so when it opens it'll sound an alarm. Angela doesn't like noises like that so I think she'll leave the door alone. I'm still working on Dean about filling in that *^$# pond though. I don't think he understands the anxiety and stress it causes me in the summertime. When Angela isn't looking like she's going to fall in it, she's throwing all the dog toys, doll strollers, or what landscaping rocks she can lift into the water. The bigger the "Sploosh!" the better, right? UGH! Just the thought of that pond raises my blood pressure. A good thing though, if Angela DID fall in, thanks to all the swimming lessons she had she won't drown. Might hit her head on a rock or 5 THEN get knocked out, but if it were just the water to worry about there wouldn't be an issue.
The next thing on my list is Angela's physical activity for the summer. She's very quickly gaining weight and this is just not ok with me. Half of her stamina issues are because of the rapid weight gain, some of which can't be helped because it's caused by her meds. But, sitting in front of the T.V. all summer won't help either! She'll be swimming 3 mornings per week, and we have a Y membership so she can do stuff there as well, but I don't always want to be inside. So I was on a quest to find her a bike that she can ride. There are several options of adaptive bikes available, but they're extremely expensive (we're talking several THOUSAND dollars!) Also, leave it to my kid, but she has managed to tip over all the adaptive bikes she's ridden. Although I spent several years planning to have Angela do a "Loose Those Training Wheels" bike camp, the reality is, given her weakened left side, she will likely never have the balance needed to ride a two wheeled bike. Then there is the whole issue of TIA's. We know A) she needs a low center of gravity to prevent tippage B) it needs to be VERY easy to pedal, or we might as well not get the darned thing C) She needs support for her back, as her stroke has made her left side weak and it collapses when she's tired. C) it must be three wheeled.
Tonight we were supposed to have track practice, but it was too cold and damp for me to be standing around in the wind (it was a lovely 45 degrees...blech!) so Angela and I headed to Carz Bike Shop which was recommended to me by my friend Kathy. Thanks to the internet, I was pretty sure what we were going to get before we even went to the shop. There are only two distributors of this particular bike, and while Cars Bike Shop isn't exactly close, it's closer than the other one in Rochester!
Anyway, we tried out the bike, a Sun Cycle EZ3, which is a recumbent trike, and it's perfect! They are going to make some minor changes to it for her (and me!), like adding a hand brake for me in the back so I have some control. Toe clips to keep those pesky feet on the pedals. Also, because it's a recumbent, the chain runs along the frame of the bike, right at Angela's inner thigh level, so they're going to make a chain guard for it. They will also change the hand brake levers that aren't waaaaay to big for Angela's tiny hands. Not that I expect her to USE them. LOL
As we were messing around in the parking lot, I began to wonder what the the world Angela has been doing in Adaptive PE in school. I know she's been riding an adaptive bike, but clearly not very much,(and no, I don't expect her to be doing this every day, I just want to be a fly on the wall to see how she does it!) as she's still at the developmental stage where they do nothing but watch their front tire go round! But this bike was light enough for me to EASILY push with one had and walk along side her so she could just practice steering and not worry about pedaling. Within about 1/2 hr she was doing a much better job of looking ahead if I gave her a target to look at.
While there are pictures on the net of the bike, I'm not going to post any until we have it, which will be sometime next week. Angela is VERY excited to get her new bike!
Next up on the agenda? Registration for Camp!
Last summer Angela was able to get a new waiver that allows us to do some things, and get some things that will not only benefit Angela, but also allow Dean and I to learn some better skills when it comes to dealing with the behavioral issues. Half of her waiver went into effect in July, but the other half had to wait until we had some other testing and documentation done, and it just went into effect April 1st. Then it had to sit on my desk for a couple of weeks (ok, almost 4) while I figured out the budget. Ummm...those who know me also know that "numbers" and "budgets" are against my religion. With everything done, submitted, and approved by the Gods at the county and state level, we're finally able to do some things we've really been wanting to do!
The first priority was getting the back yard fenced. Angela is learning new skills every day, and her favorite one is called "Spying on the neighbors". (Now that spring is here, and the trees are getting their leaves this will be more difficult to do.) Now, Angela isn't the little old lady across the street who peeks out her curtains every time you make a move. No, Angela is the little girl at the top of the hill, standing in the picture window, watching all the neighbors garage doors. You see, an open garage door means the neighbors are HOME, which...in her mind...means they're available to play! Oh, and she doesn't want them to play at our house, because our house is boring. She wants to play at THEIR house. She also wants to see what food and drinks they have in their fridge, and what shows are on their TV. I think I've sufficiently warned all the neighbors, but that doesn't stop Angela from just taking off to go visiting! As always she saves her adventures for when I'm in the shower or otherwise indisposed, which gives her a several minute head start, and me a heart attack when I discover she's gone!
On Thursday the "fence guys" will be here to set the posts for the fence, then they'll come back on Monday or Tuesday to put the actual fence up. Let me just say I CAN NOT WAIT! The basement door will open directly into the fenced area. Angela will be able to go in and out at her will, while the front door will either remain locked, or I'm putting one of those beeper thingies on it so when it opens it'll sound an alarm. Angela doesn't like noises like that so I think she'll leave the door alone. I'm still working on Dean about filling in that *^$# pond though. I don't think he understands the anxiety and stress it causes me in the summertime. When Angela isn't looking like she's going to fall in it, she's throwing all the dog toys, doll strollers, or what landscaping rocks she can lift into the water. The bigger the "Sploosh!" the better, right? UGH! Just the thought of that pond raises my blood pressure. A good thing though, if Angela DID fall in, thanks to all the swimming lessons she had she won't drown. Might hit her head on a rock or 5 THEN get knocked out, but if it were just the water to worry about there wouldn't be an issue.
The next thing on my list is Angela's physical activity for the summer. She's very quickly gaining weight and this is just not ok with me. Half of her stamina issues are because of the rapid weight gain, some of which can't be helped because it's caused by her meds. But, sitting in front of the T.V. all summer won't help either! She'll be swimming 3 mornings per week, and we have a Y membership so she can do stuff there as well, but I don't always want to be inside. So I was on a quest to find her a bike that she can ride. There are several options of adaptive bikes available, but they're extremely expensive (we're talking several THOUSAND dollars!) Also, leave it to my kid, but she has managed to tip over all the adaptive bikes she's ridden. Although I spent several years planning to have Angela do a "Loose Those Training Wheels" bike camp, the reality is, given her weakened left side, she will likely never have the balance needed to ride a two wheeled bike. Then there is the whole issue of TIA's. We know A) she needs a low center of gravity to prevent tippage B) it needs to be VERY easy to pedal, or we might as well not get the darned thing C) She needs support for her back, as her stroke has made her left side weak and it collapses when she's tired. C) it must be three wheeled.
Tonight we were supposed to have track practice, but it was too cold and damp for me to be standing around in the wind (it was a lovely 45 degrees...blech!) so Angela and I headed to Carz Bike Shop which was recommended to me by my friend Kathy. Thanks to the internet, I was pretty sure what we were going to get before we even went to the shop. There are only two distributors of this particular bike, and while Cars Bike Shop isn't exactly close, it's closer than the other one in Rochester!
Anyway, we tried out the bike, a Sun Cycle EZ3, which is a recumbent trike, and it's perfect! They are going to make some minor changes to it for her (and me!), like adding a hand brake for me in the back so I have some control. Toe clips to keep those pesky feet on the pedals. Also, because it's a recumbent, the chain runs along the frame of the bike, right at Angela's inner thigh level, so they're going to make a chain guard for it. They will also change the hand brake levers that aren't waaaaay to big for Angela's tiny hands. Not that I expect her to USE them. LOL
As we were messing around in the parking lot, I began to wonder what the the world Angela has been doing in Adaptive PE in school. I know she's been riding an adaptive bike, but clearly not very much,(and no, I don't expect her to be doing this every day, I just want to be a fly on the wall to see how she does it!) as she's still at the developmental stage where they do nothing but watch their front tire go round! But this bike was light enough for me to EASILY push with one had and walk along side her so she could just practice steering and not worry about pedaling. Within about 1/2 hr she was doing a much better job of looking ahead if I gave her a target to look at.
While there are pictures on the net of the bike, I'm not going to post any until we have it, which will be sometime next week. Angela is VERY excited to get her new bike!
Next up on the agenda? Registration for Camp!
Prom!
Tyler went to prom on Saturday with his friend Jenna. Those who know me, you'll be shocked to hear I didn't cry! Very close...very very close...but I held it together!
Jenna's mom Paula, pinning his flower on.
Doesn't he look dashing?
Jenna's dress was fantabulous!
And of course, Angela had to get in a picture too!
Jenna's mom Paula, pinning his flower on.
Doesn't he look dashing?
Jenna's dress was fantabulous!
And of course, Angela had to get in a picture too!
Friday, May 16, 2008
Thursday, May 15, 2008
Check This Box
Ohhh...I hate making decisions about something that is months away! Well, I guess it depends upon what the decision is about. Like..I have no problem buying airline tickets for a vacation months in advance. Writing it on the calendar and saving the date!
The decision I have to make now is of a different sort, and can always be changed if need be. How cool is that?
For many years, every day when Angela was picked up by the Special Ed bus I walked her down the driveway and waited with her. This is called a "hand to hand transfer". Not only did I do this for the usual safety reasons related to school bus stops, but also because a) I couldn't trust Angela to stay put, staying out of the street, etc. and b) our driveway is also very steep, and in the winter time quite icy. Angela's having poor balance made the trip downhill very difficult for her. Our driveway is kind of long, so if there was a problem it would take me a minute to get there. This worked the same way when she came home, and the driver was not allowed to let her off the bus unless I was at the bus stop. I kid you not, this is worse than having a Kindergarten bus coming and going in the middle of the day, especially since Angela has shortened days! LOL
This year for 5th grade I decided she was ready for some added independence, and bumped her up to "eye to eye" transfer. That meant that Angela could walk to the bus stop herself without Mom hovering around. It also meant that when her bus brought her home I no longer had to walk down the to the end of the driveway to meet her, instead just waving from the top of the hill. However, if they didn't see me, they couldn't drop her off. They also stay at the end of the driveway until she's about 1/2 way up the drive.
According to the calendar, next year Angela is no longer a little kid and will be moving on to the middle school. Her mother is having a hard time with this transition! One of the things I'm having a hard time wit is the busing situation. Angela has been riding the special ed bus because her elementary school isn't our neighborhood school. Instead she attends on on the other side of our town. But next year is different! In the mornings Angela will ride the regular middle school bus with all the other kids. There aren't any other middle school age students in our neighborhood, so I'm hoping she can still be picked up at the end of our driveway. I don't trust her to walk up the street to a bus stop so if she has to, Mom will be walking with her. However, in the afternoons she'll still be coming home much earlier than the other students (noon vs. 2:30).
I had to fill out a form for the transportation department for the special ed bus. I had to choose between three options:
hand to hand transfer
eye to eye transfer
unaided transfer
I hadn't thought of that unaided transfer option. Thats where Angela would be dropped off and the bus would leave as soon as she steps off the bus. They don't need to verify there is an adult here, and Angela can enter the house on her own.
I think she's ready, or will be ready for that by fall. That means even if I'm not home she can come in the house (she'll just plop herself in front of the t.v. I'm sure! LOL) and means I don't have to freak out about making it home in time for the bus. Most moms get past that when their child hits first grade and heads off the full-day school. Not me, I've been doing this for 6 years now and really, I'm tired of it. So, I checked the "unaided transfer" box. I guess we'll never know for SURE if she's ready for this unless we try it, right? RIGHT?
The decision I have to make now is of a different sort, and can always be changed if need be. How cool is that?
For many years, every day when Angela was picked up by the Special Ed bus I walked her down the driveway and waited with her. This is called a "hand to hand transfer". Not only did I do this for the usual safety reasons related to school bus stops, but also because a) I couldn't trust Angela to stay put, staying out of the street, etc. and b) our driveway is also very steep, and in the winter time quite icy. Angela's having poor balance made the trip downhill very difficult for her. Our driveway is kind of long, so if there was a problem it would take me a minute to get there. This worked the same way when she came home, and the driver was not allowed to let her off the bus unless I was at the bus stop. I kid you not, this is worse than having a Kindergarten bus coming and going in the middle of the day, especially since Angela has shortened days! LOL
This year for 5th grade I decided she was ready for some added independence, and bumped her up to "eye to eye" transfer. That meant that Angela could walk to the bus stop herself without Mom hovering around. It also meant that when her bus brought her home I no longer had to walk down the to the end of the driveway to meet her, instead just waving from the top of the hill. However, if they didn't see me, they couldn't drop her off. They also stay at the end of the driveway until she's about 1/2 way up the drive.
According to the calendar, next year Angela is no longer a little kid and will be moving on to the middle school. Her mother is having a hard time with this transition! One of the things I'm having a hard time wit is the busing situation. Angela has been riding the special ed bus because her elementary school isn't our neighborhood school. Instead she attends on on the other side of our town. But next year is different! In the mornings Angela will ride the regular middle school bus with all the other kids. There aren't any other middle school age students in our neighborhood, so I'm hoping she can still be picked up at the end of our driveway. I don't trust her to walk up the street to a bus stop so if she has to, Mom will be walking with her. However, in the afternoons she'll still be coming home much earlier than the other students (noon vs. 2:30).
I had to fill out a form for the transportation department for the special ed bus. I had to choose between three options:
hand to hand transfer
eye to eye transfer
unaided transfer
I hadn't thought of that unaided transfer option. Thats where Angela would be dropped off and the bus would leave as soon as she steps off the bus. They don't need to verify there is an adult here, and Angela can enter the house on her own.
I think she's ready, or will be ready for that by fall. That means even if I'm not home she can come in the house (she'll just plop herself in front of the t.v. I'm sure! LOL) and means I don't have to freak out about making it home in time for the bus. Most moms get past that when their child hits first grade and heads off the full-day school. Not me, I've been doing this for 6 years now and really, I'm tired of it. So, I checked the "unaided transfer" box. I guess we'll never know for SURE if she's ready for this unless we try it, right? RIGHT?
Sunday, May 11, 2008
Mother's Tears
It's not until we become mothers ourselves that we understand the tears a mother cries for her children.
Noah, my firstborn. As he was placed in my arms and I felt, for the first time, the joy only a mother can feel. He is the only one who got those very first mother's tears. They carried with them a bond only he and I can share. I cried tears of fear when, as a toddler, his finger was amputated in an accident, and tears of anguish as I handed him over to the surgeon to have it re-attached. When he was two I cried tears of delight when I found him dragging wet worms around on the driveway, and when I asked what he was doing he told me, "I'm painting!". When he was 12 I cried tears of "Why him?" when we were told he'd need to give himself shots every day, and tears of frustration when at 14 he suddenly refused to do them anymore. I cried tears of sorrow for the teenager who ran away from home several times, and tears of gratitude when he returned safely. There were the tears of pride when I saw my handsome boy dressed for prom, and more at graduation. He'll be 21 soon. My tears for Noah will continue as I watch him struggle his way through adulthood, as I'm sure my mother still cries for me.
Tyler, the middle child. I spent 3 months crying when Tyler was born. He came into this world confused and angry, as if he was upset about having been ripped out of the nice warm cocoon he'd had all to himself. My tears for Tyler were usually in frustration, not knowing how to help him, how to make him feel comfortable in this world that required touch. Tears of sorrow for the boy who struggled to be understood and would repeat himself over and over again until we finally were able to put together what he was trying to say. There were sad, helpless tears as I held him down for repeated blood draws to figure out why his blood cells were different from everyone else's, and tears of apology when I was able to comfort him afterwards. There were lots of tears of joy for Tyler too! Like when he was finally able to say his own name, and when he walked on his feet instead of his knees. Tears of pride at his ability to understand words far bigger than him, like "bioluminescence". There were the tears of fear when mental illness reared it's ugly head and we learned more than we ever cared to about the world of psychiatric care. Really though, those tears of fear and frustration that flowed from me for Tyler were prayerful tears, asking God to show me how to help my son. Now at 19 I see a wonderful young man with a heart of gold. Caring and thoughtful, he holds a place in my heart that no other can ever have. I know I have years of tears for Tyler ahead of me, but for now, when I cry for Tyler, I cry tears of pride as I watch this amazing young man.
When Angela was a baby, I cried many tears for her. Tears of "Why me? Why HER?". Tears of sorrow as we were given bad news over and over again. Tears of fear as I handed over over to the surgeon time and time again. At 8 years old, when I cried at her first her track meet, she asked me, "Why crying mom?" How do you explain to a child you're crying because as she runs across the finish line, you remembered a doctors voice telling you she'd never live past a year old. "Why are you crying mom?" after her recent theater performance. Those tears of pride for my baby, for all the hard work she put in, this child who would likely never talk. "Why are you crying mom?" as she leaps fearlessly into the deep end of the pool and comes to the surface with a huge grin on her face. "Did you see me mom? Did you see?". Tears of thanks to God for allowing me to see this beautiful, wonderful child of mine.
A mother's tears. Joy, sorrow, fear, gratitude, love, happiness. All the things mothers cry about. I'm so thankful to Him for allowing to shed mother's tears.
Noah, my firstborn. As he was placed in my arms and I felt, for the first time, the joy only a mother can feel. He is the only one who got those very first mother's tears. They carried with them a bond only he and I can share. I cried tears of fear when, as a toddler, his finger was amputated in an accident, and tears of anguish as I handed him over to the surgeon to have it re-attached. When he was two I cried tears of delight when I found him dragging wet worms around on the driveway, and when I asked what he was doing he told me, "I'm painting!". When he was 12 I cried tears of "Why him?" when we were told he'd need to give himself shots every day, and tears of frustration when at 14 he suddenly refused to do them anymore. I cried tears of sorrow for the teenager who ran away from home several times, and tears of gratitude when he returned safely. There were the tears of pride when I saw my handsome boy dressed for prom, and more at graduation. He'll be 21 soon. My tears for Noah will continue as I watch him struggle his way through adulthood, as I'm sure my mother still cries for me.
Tyler, the middle child. I spent 3 months crying when Tyler was born. He came into this world confused and angry, as if he was upset about having been ripped out of the nice warm cocoon he'd had all to himself. My tears for Tyler were usually in frustration, not knowing how to help him, how to make him feel comfortable in this world that required touch. Tears of sorrow for the boy who struggled to be understood and would repeat himself over and over again until we finally were able to put together what he was trying to say. There were sad, helpless tears as I held him down for repeated blood draws to figure out why his blood cells were different from everyone else's, and tears of apology when I was able to comfort him afterwards. There were lots of tears of joy for Tyler too! Like when he was finally able to say his own name, and when he walked on his feet instead of his knees. Tears of pride at his ability to understand words far bigger than him, like "bioluminescence". There were the tears of fear when mental illness reared it's ugly head and we learned more than we ever cared to about the world of psychiatric care. Really though, those tears of fear and frustration that flowed from me for Tyler were prayerful tears, asking God to show me how to help my son. Now at 19 I see a wonderful young man with a heart of gold. Caring and thoughtful, he holds a place in my heart that no other can ever have. I know I have years of tears for Tyler ahead of me, but for now, when I cry for Tyler, I cry tears of pride as I watch this amazing young man.
When Angela was a baby, I cried many tears for her. Tears of "Why me? Why HER?". Tears of sorrow as we were given bad news over and over again. Tears of fear as I handed over over to the surgeon time and time again. At 8 years old, when I cried at her first her track meet, she asked me, "Why crying mom?" How do you explain to a child you're crying because as she runs across the finish line, you remembered a doctors voice telling you she'd never live past a year old. "Why are you crying mom?" after her recent theater performance. Those tears of pride for my baby, for all the hard work she put in, this child who would likely never talk. "Why are you crying mom?" as she leaps fearlessly into the deep end of the pool and comes to the surface with a huge grin on her face. "Did you see me mom? Did you see?". Tears of thanks to God for allowing me to see this beautiful, wonderful child of mine.
A mother's tears. Joy, sorrow, fear, gratitude, love, happiness. All the things mothers cry about. I'm so thankful to Him for allowing to shed mother's tears.
Who Made the Rule?
Who made the rule that says, "All clothing, after being washed and dried, must be folded and put away into drawers and closets." I've never seen that rule in writing, but I want to know where it came from!
I happen to hate this rule, because...frankly...I suck at getting any of this done! At one time I had 5 kids in the house and I was FAR more organized about laundry then than I am now. But even then, there would often be a mountain in the laundry room!
So here I am, with only 3 of us to do laundry for, and I can't keep up. This is silly though, because I'm no longer working outside the home, so clearly it's a priorty thing. I just hate laundry, the same way I hate cooking and I suck at that too. The laundry that DOES get clean rarely makes it back upstairs to bedrooms, closets and dressers. Instead it stays in baskets in the laundry room, and every morning we each go dig in there for socks, underwear, and whatever else we need. Occasionally I have a caffiene date with myself and get a ton of it done AND folded and put away! But...sadly...this is rare.
A couple weeks ago I asked my husband to do something for me. I told him about the silly rule and how it doesn't have to be this way. There really is no such rule, and so no reason to live by it. I wanted a set of shelves in the laundry room. Well, really I wanted several sets..one for each person, then some for that oddball laundry like linens and towels. I drew it all out, and after making many promises to fold everything as it comes out of the dryer, he built them for me. The laundry room is now just one giant dresser!
My husband is actually loving these shelves, as we have a bathroom that is being remodeled, that is right next to the laundry room, which he is claiming as "his" bathroom. Every morning he will go to the laundry room...I mean dresser...pick out his clothes that are easy to see and find, and do his thing in "his" bathroom.
This is also helpful for Angela, who is really wanting nothing to do with Mom picking out her clothes each day anymore. So I bought her this really cool daily clothing stacker thing from Lillian Vernon.
So, I'm removing the dressers from her room, because A) her room is crowded and b) she doesn't need them anymore. Instead her clothes for the week are in her daily stacker, and she has happily been getting up each morning, pulling out her clothes for that day, and putting them on! And...tricky mom that I am...when the clothes don't match the forcast for the next day, I sneak in there before she gets up and switch 'em! LOL
Maybe tomorrow I'll take some pictures of my laundry room. Now it needs paint and flooring.....sigh.....
I happen to hate this rule, because...frankly...I suck at getting any of this done! At one time I had 5 kids in the house and I was FAR more organized about laundry then than I am now. But even then, there would often be a mountain in the laundry room!
So here I am, with only 3 of us to do laundry for, and I can't keep up. This is silly though, because I'm no longer working outside the home, so clearly it's a priorty thing. I just hate laundry, the same way I hate cooking and I suck at that too. The laundry that DOES get clean rarely makes it back upstairs to bedrooms, closets and dressers. Instead it stays in baskets in the laundry room, and every morning we each go dig in there for socks, underwear, and whatever else we need. Occasionally I have a caffiene date with myself and get a ton of it done AND folded and put away! But...sadly...this is rare.
A couple weeks ago I asked my husband to do something for me. I told him about the silly rule and how it doesn't have to be this way. There really is no such rule, and so no reason to live by it. I wanted a set of shelves in the laundry room. Well, really I wanted several sets..one for each person, then some for that oddball laundry like linens and towels. I drew it all out, and after making many promises to fold everything as it comes out of the dryer, he built them for me. The laundry room is now just one giant dresser!
My husband is actually loving these shelves, as we have a bathroom that is being remodeled, that is right next to the laundry room, which he is claiming as "his" bathroom. Every morning he will go to the laundry room...I mean dresser...pick out his clothes that are easy to see and find, and do his thing in "his" bathroom.
This is also helpful for Angela, who is really wanting nothing to do with Mom picking out her clothes each day anymore. So I bought her this really cool daily clothing stacker thing from Lillian Vernon.
So, I'm removing the dressers from her room, because A) her room is crowded and b) she doesn't need them anymore. Instead her clothes for the week are in her daily stacker, and she has happily been getting up each morning, pulling out her clothes for that day, and putting them on! And...tricky mom that I am...when the clothes don't match the forcast for the next day, I sneak in there before she gets up and switch 'em! LOL
Maybe tomorrow I'll take some pictures of my laundry room. Now it needs paint and flooring.....sigh.....
Friday, May 09, 2008
Ooohhh I can hardly stand it!
Tyler and I drove down to Jordan, MN today, to pick up Angela's sidecar that I had painted. First, let me tell you, Tracy over at TJ Design was an awesome guy to work with! The first time I was there, I walked into one area of the shop that had several motorcycle tanks in various stages of the design process. There was some AWESOME artwork to drool over! The next time I was there, a guy was picking up his bike that had an unbelievable tribute portrait on it. Someday, when I have the money, I'll have him do my dream paint job. Not only is money an issue right now, but I was a little worried about spending a few thousand dollars on it, and THEN discover I don't like riding with a sidecar! That would really bite! LOL
There were some funky problems that he ran into. Like the tub had a crack in it that wasn't visible. (it was under the seat, against the frame.) that needed to be repaired. There was also a funky chemical reaction between the old paint and the new that caused it to bubble, requiring re-sanding, and then it bubbled again. Very frustrating to the artist!
I didn't think to bring my camera with me to pick it up so you could see it out in the sunlight, so here are pictures of it inside my truck. Tomorrow Tyler and I will bring it down to Spring Valley, MN to the shop of Dave's Cycle who will be mounting it to my bike. A couple more weeks and I should be on the road! When Angela came home I told her, "I have a surprise for you!" and opened up the back of the truck. Oh my gosh...she was SO EXCITED! She was jumping up and down and wanted to climb in the truck to get in the sidecar. LOL Here's what pictures I have, and a picture of the bike it'll be mounted to.
There were some funky problems that he ran into. Like the tub had a crack in it that wasn't visible. (it was under the seat, against the frame.) that needed to be repaired. There was also a funky chemical reaction between the old paint and the new that caused it to bubble, requiring re-sanding, and then it bubbled again. Very frustrating to the artist!
I didn't think to bring my camera with me to pick it up so you could see it out in the sunlight, so here are pictures of it inside my truck. Tomorrow Tyler and I will bring it down to Spring Valley, MN to the shop of Dave's Cycle who will be mounting it to my bike. A couple more weeks and I should be on the road! When Angela came home I told her, "I have a surprise for you!" and opened up the back of the truck. Oh my gosh...she was SO EXCITED! She was jumping up and down and wanted to climb in the truck to get in the sidecar. LOL Here's what pictures I have, and a picture of the bike it'll be mounted to.
Thursday, May 08, 2008
Angela's New Aids
A few of my internet friends have young kids with DS who either already have, or will soon be getting hearing aids. As mentioned in a previous post, I've spent many years caring for other kids' aids before Angela came along. Isn't it funny how God prepares us for things, by giving us skills we're going to need later on? LOL
Anyway, Angela's new aids came a few weeks ago. Hers are open fit aids, and usually they don't need an ear mold. However, kids with DS usually have such tiny ear canals that fitting domed aids can be difficult. So we went with the newer, smaller ear molds. In 11 years this is the first set of home aids (she wears different ones at school) that she has tolerated!
Open fit aids are the "latest and greatest" when it comes to hearing aids. They're specifically designed to address mild/moderate hearing loss. They provide better sound, less feedback (that high pitched squealing noise that aids make when they're "leaking" sound.) and are easier to program than older models. They're also much smaller, which is really nice when you're trying to fit the tiny ears that kids with DS often have.
The new aids can be ordered either flesh colored, or in a variety of colors. We chose flesh colored aids, and bright pink ear molds. In the past we've always gone with clear molds that are pretty much invisible, however the colored molds allow me to see AT A GLANCE that Angela's aids are in her ears. This is especially helpful when we're outside (makes me cringe, having her wear her aids outside, but hey...she can hear the birds with them on!) or in other situations where she's apt to either loose them or ditch them on purpose. If you're dealing with a toddler the same would be true. From across the room you can see that the aids are in the ears where they belong! Here's a picture of Angela's new aids and molds.
When Angela was little her ears were tiny and very soft, and had a difficult time supporting the weight of her hearing aids. (they were much larger and heavier then.) Huggies are silicone rings that come in a variety of sizes. They fit around the ear to help the aid stay on. If you look closely in this picture you can see the huggies and the string from the critter clips on Angela's ears. Also notice the dark purple ear molds. (by the way, those earmods were about the size of a dime, and I still have them!)
Another tool to prevent loosing aids is to use otoclips. The concept is similar to pacifier clips. They come in cute little designs and can be easily fastened to your child's clothing.
The Phonak company also sells a "kidsclip" which is the same, just different. LOL
Ok, so you've just found out your child needs aids. THEN you found out your insurance doesn't cover them. THEN you found out how much hearing aids COST!!! (anywhere from $3000-6,000 PER EAR!) Where do you go now? Go to visit Hearing Mojo, and read all the information there. They will guide you to America Hears. This company is owned by the former employer of a family member of ours. He got sick of people not being able to afford hearing aids when their insurance won't cover.
I hope some of you will find this information helpful. Feel free to contact me privately if you're still feeling stuck, or need tips and tricks to keeping those darned things on your kid! I think I've tried everything! LOL
Anyway, Angela's new aids came a few weeks ago. Hers are open fit aids, and usually they don't need an ear mold. However, kids with DS usually have such tiny ear canals that fitting domed aids can be difficult. So we went with the newer, smaller ear molds. In 11 years this is the first set of home aids (she wears different ones at school) that she has tolerated!
Open fit aids are the "latest and greatest" when it comes to hearing aids. They're specifically designed to address mild/moderate hearing loss. They provide better sound, less feedback (that high pitched squealing noise that aids make when they're "leaking" sound.) and are easier to program than older models. They're also much smaller, which is really nice when you're trying to fit the tiny ears that kids with DS often have.
The new aids can be ordered either flesh colored, or in a variety of colors. We chose flesh colored aids, and bright pink ear molds. In the past we've always gone with clear molds that are pretty much invisible, however the colored molds allow me to see AT A GLANCE that Angela's aids are in her ears. This is especially helpful when we're outside (makes me cringe, having her wear her aids outside, but hey...she can hear the birds with them on!) or in other situations where she's apt to either loose them or ditch them on purpose. If you're dealing with a toddler the same would be true. From across the room you can see that the aids are in the ears where they belong! Here's a picture of Angela's new aids and molds.
When Angela was little her ears were tiny and very soft, and had a difficult time supporting the weight of her hearing aids. (they were much larger and heavier then.) Huggies are silicone rings that come in a variety of sizes. They fit around the ear to help the aid stay on. If you look closely in this picture you can see the huggies and the string from the critter clips on Angela's ears. Also notice the dark purple ear molds. (by the way, those earmods were about the size of a dime, and I still have them!)
Another tool to prevent loosing aids is to use otoclips. The concept is similar to pacifier clips. They come in cute little designs and can be easily fastened to your child's clothing.
The Phonak company also sells a "kidsclip" which is the same, just different. LOL
Ok, so you've just found out your child needs aids. THEN you found out your insurance doesn't cover them. THEN you found out how much hearing aids COST!!! (anywhere from $3000-6,000 PER EAR!) Where do you go now? Go to visit Hearing Mojo, and read all the information there. They will guide you to America Hears. This company is owned by the former employer of a family member of ours. He got sick of people not being able to afford hearing aids when their insurance won't cover.
I hope some of you will find this information helpful. Feel free to contact me privately if you're still feeling stuck, or need tips and tricks to keeping those darned things on your kid! I think I've tried everything! LOL
Tuesday, May 06, 2008
HUH?
Today I was talking to Angela's teacher, who mentioned that she watched the video from Angela's performance the other night. Her response made me want to post something I recently told another parent who has a daughter with DS.
If you have a child with a cognitive disability, find one thing that she REALLY likes. It doesn't matter if she has the skills or not, just that she LIKES it, and RUN WITH IT! Find a way to get her involved with other kids who like that too. She will fit in, and the other kids will love helping her with it. Angela's special ed teachers are amazed at the things she does outside of school (theater, voice lessons, etc.) because they've never had a kid doing this stuff. Which makes me wonder...what DO they do? There is so much available in our area, why aren't they taking advantage of it? I don't understand WHY no other kids with disabilities in her program are doing this stuff. Maybe parents just assume their kids can't do it? I mean, I've found that Angela doesn't do well with team sports, and so we avoid them. But anything she can do on an individual basis she LOVES!!! Whatever the reason, I just want Angela to be happy and have fun with what she's doing. And just like all my other kids, the moment she says "I don't like it" we're done and move onto something else.
If you have a child with a cognitive disability, find one thing that she REALLY likes. It doesn't matter if she has the skills or not, just that she LIKES it, and RUN WITH IT! Find a way to get her involved with other kids who like that too. She will fit in, and the other kids will love helping her with it. Angela's special ed teachers are amazed at the things she does outside of school (theater, voice lessons, etc.) because they've never had a kid doing this stuff. Which makes me wonder...what DO they do? There is so much available in our area, why aren't they taking advantage of it? I don't understand WHY no other kids with disabilities in her program are doing this stuff. Maybe parents just assume their kids can't do it? I mean, I've found that Angela doesn't do well with team sports, and so we avoid them. But anything she can do on an individual basis she LOVES!!! Whatever the reason, I just want Angela to be happy and have fun with what she's doing. And just like all my other kids, the moment she says "I don't like it" we're done and move onto something else.
Just say NO to wallpaper
Please step away from the wallpaper isle. I mean it...don't even contemplate it. I can guarantee that if you do put wallpaper up in your house, whoever lives there after you WILL hate it, and they WILL grow to hate you when they're trying to take it down.
Monday, May 05, 2008
Knock Knock Knock
Knock Knock Knock....go to your door and open it. As you do, imagine being greeted by this darling face.
You say, "May I help you little girl?"
She says, "I'm not little! I'm almost 12!"
You say, "Ok almost 12 year old...what can I do for you? And I don't want Girl Scout cookies, I already have a freezer full"
She says, "Oh...ok...This is way better! Do you see me? Do you see that I have Down Syndrome?"
You say, "Really? I hadn't noticed."
She says, "I do! There are alot of people in the world just like me, and there are more coming. Maybe your own baby, maybe a niece or nephew you don't know about yet. Maybe your neighbor? Maybe next week you'll hold your new grandchild who is just like me. They're coming. Can you help them? Will you help them? Please...go to this website to help them. My mom wrote something there.
Of course, you will go there, to read what this girl's crazy mother has to say!
You say, "May I help you little girl?"
She says, "I'm not little! I'm almost 12!"
You say, "Ok almost 12 year old...what can I do for you? And I don't want Girl Scout cookies, I already have a freezer full"
She says, "Oh...ok...This is way better! Do you see me? Do you see that I have Down Syndrome?"
You say, "Really? I hadn't noticed."
She says, "I do! There are alot of people in the world just like me, and there are more coming. Maybe your own baby, maybe a niece or nephew you don't know about yet. Maybe your neighbor? Maybe next week you'll hold your new grandchild who is just like me. They're coming. Can you help them? Will you help them? Please...go to this website to help them. My mom wrote something there.
Of course, you will go there, to read what this girl's crazy mother has to say!
Sunday, May 04, 2008
Isn't this cool? You could win it!
It's a Caboose Trailer Bike, and isn't it cool? You could win it! Just visit 5 Minutes For Mom for details.
Friday, May 02, 2008
Angela's Stage Debut!
For four months I have tried not to be a stage mom. I have sat back and watched Angela create a mask, and work on developing it as a character. I have watched her learn to use her voice in ways she's never thought of, both loud and soft, and in different tones. She even learned how to use a voice that could be heard from the stage.
I have to say, the director of this troup is FANTASTIC with Angela! She only expects Angela to do her best, and if that means she can only say 2 lines for her monologue, than that's all she expects her to do. But she's also a great one for adaptation, and she has figured out a way to keep Angela on the stage longer and help her through.
When Angela auditioned I had her read her birth story. She read it painfully slow, and the director helped her...a lot...but had her read the entire thing. She said Angela made it in because she didn't give up, even when she was frustrated. The other kids were assigned a monologue, but that prooved to be a bit tough for Angela (and several of the other kids.) So Angela's monologue was changed to a dialog, but she wanted her to do her birth story because it's something meaningful to Angela, and thus easier for her to memorize.
So here it is, her stage debut. The beginning of the video shows The Boogaloo, which is one of the games they play at SOS. You'll see Angela wearing jeans and a black shirt. (look for the tall adult in green and you'll find Angela.) then comes her dialog with Greg. What you don't see is what happened when I stopped recording. You can hear people start to cheer in the background. When Angela heard that she turned and did her usual jump for joy that she does when she's proud of herself. When **I** turned around, I found that the audience was giving her a standing ovation! Yep, that did me in!
So...enjoy.....
I have to say, the director of this troup is FANTASTIC with Angela! She only expects Angela to do her best, and if that means she can only say 2 lines for her monologue, than that's all she expects her to do. But she's also a great one for adaptation, and she has figured out a way to keep Angela on the stage longer and help her through.
When Angela auditioned I had her read her birth story. She read it painfully slow, and the director helped her...a lot...but had her read the entire thing. She said Angela made it in because she didn't give up, even when she was frustrated. The other kids were assigned a monologue, but that prooved to be a bit tough for Angela (and several of the other kids.) So Angela's monologue was changed to a dialog, but she wanted her to do her birth story because it's something meaningful to Angela, and thus easier for her to memorize.
So here it is, her stage debut. The beginning of the video shows The Boogaloo, which is one of the games they play at SOS. You'll see Angela wearing jeans and a black shirt. (look for the tall adult in green and you'll find Angela.) then comes her dialog with Greg. What you don't see is what happened when I stopped recording. You can hear people start to cheer in the background. When Angela heard that she turned and did her usual jump for joy that she does when she's proud of herself. When **I** turned around, I found that the audience was giving her a standing ovation! Yep, that did me in!
So...enjoy.....
Monday, April 28, 2008
Dressing for the eather or the World?
5 Mintues for Mom is running a Mother's Day photo contest. The photo can be alone, or with an essay telling the story behind it, or how the picture reminds you of motherhood. I've decided to enter this one. I know I've posted this before, but I'm doing it again! LOL I think this is what ever mother does every day, but being a mother of a child with a disability, I think we tend to do it with slightly a little more prayer behind it......................
It's a rare morning when I'm up before Angela. She usually beats the sun and the roosters. Today was one of those rare mornings, but I didn't beat her by much...minutes at most. All was quiet in the house as I lay in bed enveloped in my cocoon of blankets, and the giant fluff ball next to me that was Zurri.
And then I heard it. The smallest voice, rehearsing her day, naming all her friends. I got up and stood quietly, motionless, outside her bedroom door. I couldn't see her, so I knew her head was under the blankets. In her quiet croaky morning voice she chanted, "All my friends. Yep, all my friends be there. A party for me. Drew, Monica, Daddy, Desi, Grandma Spring, Mom, Dean, Noah, Tyler, Bryon, Mrs. Hubbard. Yep...all there...for me...my party...It's a fun time my party. Should I wear a dress? No...Should I wear a fancy shoes? No...Stripes. Yep, that's right. I'll wear my stripes. My Florida stripes....my party...all my special people will come."
She got herself up and dressed, then came to find me for some breakfast. "Mom? What I wearing to my party?"
As I envisioned the mountain of striped shirts in her dresser, I answered "I don't know Angela. I hadn't really thought about it. But, since stripes are your favorite I bet that would be a good choice, and certainly one we have many options for."
Time to get dressed for the bus. We're having frigid temperatures here in MN, so every possible piece of outdoor clothing is required. She struggled with her snow pants a bit, the ones that are threatening to fall apart before the end of winter when you can't find them in the stores anymore. She pulled on her boots, then her jacket. She's still not able to zip, so I bent down to help with that. I pulled up the zipper, then tied her scarf around her face. She pulled on her mittens as I slipped her "Cars" backpack over her shoulders. (she won't have anything to do with girly backpacks, no she wanted Spiderman or Cars!)
I opened the door to send the pink puffball out into the biting wind, but at the last second she turned, "You forgot my kiss mom!"and turned to face me with an exaggerated pucker, complete with crusted toothpaste on the corners of her mouth.
As I watched her waddle down our long, steep and icy driveway it occurred to me I wasn't just dressing her for the weather. I was dressing her to protect her against the elements of the world. I did it with all my kids, just as all parents do. But with Angela, there are some things in the world that she's a bit more vulnerable to. So I prepare her for them as best I can, giving her the protective layers to shield her from the bitter cold that the world can sometimes dish out to kids like her. Those who are different from everyone else, who struggle to learn what might come easy to most. I have spent 11 1/2 years praying over her, that the Lord will show her the right way, to the parts of the world that will welcome her, and love her for who she is.
She stands there in the wind, independent of me, well out of my protective reach, singing the songs of girlhood, ready to jump into the world with both feet. Her spirit screams "I'm READY! I can do it!"
It's a rare morning when I'm up before Angela. She usually beats the sun and the roosters. Today was one of those rare mornings, but I didn't beat her by much...minutes at most. All was quiet in the house as I lay in bed enveloped in my cocoon of blankets, and the giant fluff ball next to me that was Zurri.
And then I heard it. The smallest voice, rehearsing her day, naming all her friends. I got up and stood quietly, motionless, outside her bedroom door. I couldn't see her, so I knew her head was under the blankets. In her quiet croaky morning voice she chanted, "All my friends. Yep, all my friends be there. A party for me. Drew, Monica, Daddy, Desi, Grandma Spring, Mom, Dean, Noah, Tyler, Bryon, Mrs. Hubbard. Yep...all there...for me...my party...It's a fun time my party. Should I wear a dress? No...Should I wear a fancy shoes? No...Stripes. Yep, that's right. I'll wear my stripes. My Florida stripes....my party...all my special people will come."
She got herself up and dressed, then came to find me for some breakfast. "Mom? What I wearing to my party?"
As I envisioned the mountain of striped shirts in her dresser, I answered "I don't know Angela. I hadn't really thought about it. But, since stripes are your favorite I bet that would be a good choice, and certainly one we have many options for."
Time to get dressed for the bus. We're having frigid temperatures here in MN, so every possible piece of outdoor clothing is required. She struggled with her snow pants a bit, the ones that are threatening to fall apart before the end of winter when you can't find them in the stores anymore. She pulled on her boots, then her jacket. She's still not able to zip, so I bent down to help with that. I pulled up the zipper, then tied her scarf around her face. She pulled on her mittens as I slipped her "Cars" backpack over her shoulders. (she won't have anything to do with girly backpacks, no she wanted Spiderman or Cars!)
I opened the door to send the pink puffball out into the biting wind, but at the last second she turned, "You forgot my kiss mom!"and turned to face me with an exaggerated pucker, complete with crusted toothpaste on the corners of her mouth.
As I watched her waddle down our long, steep and icy driveway it occurred to me I wasn't just dressing her for the weather. I was dressing her to protect her against the elements of the world. I did it with all my kids, just as all parents do. But with Angela, there are some things in the world that she's a bit more vulnerable to. So I prepare her for them as best I can, giving her the protective layers to shield her from the bitter cold that the world can sometimes dish out to kids like her. Those who are different from everyone else, who struggle to learn what might come easy to most. I have spent 11 1/2 years praying over her, that the Lord will show her the right way, to the parts of the world that will welcome her, and love her for who she is.
She stands there in the wind, independent of me, well out of my protective reach, singing the songs of girlhood, ready to jump into the world with both feet. Her spirit screams "I'm READY! I can do it!"
Sunday, April 27, 2008
Blogger Give Away!
My friend Renee is having a contest. The winner gets to pick something from her online store. Go HERE to enter!
Saturday, April 26, 2008
My Perfect Child
I'd heard this a few years ago, but was reminded of it again today when it was read at Eric's funeral.
As my children were born,
I wanted them to be perfect.
When they were babies,
I wanted them to smile and be content playing with their toys.
I wanted them to be happy and to laugh continually
instead of crying and being demanding.
I wanted them to see the beautiful side of life.
As they grew older,
I wanted them to be giving instead of selfish.
I wanted them to skip the terrible twos.
I wanted them to stay innocent forever.
As they became teen-agers,
I wanted them to be obedient and not rebellious, mannerly and not mouthy.
I wanted them to be full of love, gentle and kind-hearted.
"Oh, God, give me a child like this" was often my prayer.
One day He did. Some call him handicapped... I call him Perfect!!
As my children were born,
I wanted them to be perfect.
When they were babies,
I wanted them to smile and be content playing with their toys.
I wanted them to be happy and to laugh continually
instead of crying and being demanding.
I wanted them to see the beautiful side of life.
As they grew older,
I wanted them to be giving instead of selfish.
I wanted them to skip the terrible twos.
I wanted them to stay innocent forever.
As they became teen-agers,
I wanted them to be obedient and not rebellious, mannerly and not mouthy.
I wanted them to be full of love, gentle and kind-hearted.
"Oh, God, give me a child like this" was often my prayer.
One day He did. Some call him handicapped... I call him Perfect!!
Friday, April 25, 2008
Funeral
Tomorrow we're attending the funeral of Dean's cousin's son. I never met 18 year old Eric, but I know I will spend this entire funeral crying. (obituary here)
Eric was severely disabled, and required a lot of care.
The day Eric died, as soon as Dean told me I was in tears for his mother. Dean was a little surprised that I was so upset. After all, I'd never met Eric, and have only met his mom once. So I tried to explain to him what I was feeling.
A few years ago Angela had a classmate named Spencer who was 8 years. A big kid who towered over 5 year old Angela, but Angela was his favorite. She could get him to do anything! At 8 years old Spencer functioned at about a 6 month level, was the height of a 12 year old, and weighed about 150 lbs. But he had one saving grace, and that was he was able to walk, even if it was with a lot of support. It made getting him from point A to point B much easier.
One day at school Spencer was very irritable, kind of whiny. Mid morning he started running a temp so his mom was called. They made the agonizingly slow trip to the car, then headed for home, but on the way he started seizing. Mom reversed course and headed for the hospital just a couple miles down the road. (this was before everyone had cell phones.) But Spencer's heart gave out before they made it there.
At the funeral, when I went to give his mom a hug, she pulled away, hands on my shoulders and looked me in the eye. With tears streaming down her face she asked me, "Now what? What do I do now? For the past 8 1/2 years every waking moment has been spent caring for Spencer. I'm Spencer's mom. I'm not Debbie, I'm Spencer's mom. What do I do now? How will I find my way?"
So tonight, as I figure out what to wear for the funeral of a young man I've never met, I can't help but put myself in the shoes of his mom. Naturally I would be upset if anything happened to ANY of my kids. Angela, though, is different. I practically know every cell in her body. The most I know about my other kids' genetic make-up is that I was their mother, and Kevin was their father. I have seen Angela's internal organs. I have nursed her through almost every ailment known to Down Syndrome. I have spent countless hours helping her to achieve what others take for granted. Although Tyler is back home at the moment, he is self sufficient. Angela is not. I would venture to say that 90% of my being revolves around Angela's care and nuturing.
I am "Angela's Mom".
Over the past year I have started to find "me" again. Just little things here and there. I'm afraid of the "what if" with Angela. I know that if something happens to her, I'll be lost for a long time. I guess it's kind of inevitable when we have kids who require a bit more care.
If you could, please remember Eric's parents in your prayers, especially his mom.
Eric was severely disabled, and required a lot of care.
The day Eric died, as soon as Dean told me I was in tears for his mother. Dean was a little surprised that I was so upset. After all, I'd never met Eric, and have only met his mom once. So I tried to explain to him what I was feeling.
A few years ago Angela had a classmate named Spencer who was 8 years. A big kid who towered over 5 year old Angela, but Angela was his favorite. She could get him to do anything! At 8 years old Spencer functioned at about a 6 month level, was the height of a 12 year old, and weighed about 150 lbs. But he had one saving grace, and that was he was able to walk, even if it was with a lot of support. It made getting him from point A to point B much easier.
One day at school Spencer was very irritable, kind of whiny. Mid morning he started running a temp so his mom was called. They made the agonizingly slow trip to the car, then headed for home, but on the way he started seizing. Mom reversed course and headed for the hospital just a couple miles down the road. (this was before everyone had cell phones.) But Spencer's heart gave out before they made it there.
At the funeral, when I went to give his mom a hug, she pulled away, hands on my shoulders and looked me in the eye. With tears streaming down her face she asked me, "Now what? What do I do now? For the past 8 1/2 years every waking moment has been spent caring for Spencer. I'm Spencer's mom. I'm not Debbie, I'm Spencer's mom. What do I do now? How will I find my way?"
So tonight, as I figure out what to wear for the funeral of a young man I've never met, I can't help but put myself in the shoes of his mom. Naturally I would be upset if anything happened to ANY of my kids. Angela, though, is different. I practically know every cell in her body. The most I know about my other kids' genetic make-up is that I was their mother, and Kevin was their father. I have seen Angela's internal organs. I have nursed her through almost every ailment known to Down Syndrome. I have spent countless hours helping her to achieve what others take for granted. Although Tyler is back home at the moment, he is self sufficient. Angela is not. I would venture to say that 90% of my being revolves around Angela's care and nuturing.
I am "Angela's Mom".
Over the past year I have started to find "me" again. Just little things here and there. I'm afraid of the "what if" with Angela. I know that if something happens to her, I'll be lost for a long time. I guess it's kind of inevitable when we have kids who require a bit more care.
If you could, please remember Eric's parents in your prayers, especially his mom.
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