Today is definitely one of those days I wish Dakotah received some services so I could have a respite care provider or nurse come and help me take care of her. Didn't sleep well last night due to tooth ache...so was exhausted this a.m. I didn't feel like even getting up, but I don't have any leave and definitely need every penny of my paycheck right now so I can attempt to get things caught up to allow us to get a place of our own.
Anyway, I still got up, fixed her breakfast (can of prescription formula/water) and fed it to her thru her feeding tube. Gave her her meds. Changed her diaper and got her dressed. This part (the dressing) is getting so much harder as she gets bigger. She's 72 lbs. of deadweight and is 4'7" so she'll be as tall as me soon (I'm only 5'5"). Anyway, then I pick her up (not so good for the back) and carry her out to her wheelchair in the other room. You see, our friends' home (where we are living so we aren't in a shelter or on the streets) is an older house and the halls are very narrow. Because of this, I can't bring her wheelchair into our room. Truthfully, there wouldn't be much room for it in here anyway. Once I get her all strapped down, we head out to the van, lower the ramp, and load up. There are four straps that I use to strap her down to the van's floor. This is for safety so her chair doesn't slide around.
Off we go to repeat the process in reverse once we arrive at her school. Then repeat in forward and reverse again when I pick her up. Luckily today it was not raining like it was yesterday. You should have seen us - I was pushing her up the ramp with one hand while holding an umbrella with the other. Dakotah may be very low cognitively but she does know this: she doesn't like the rain, wind, having her hair done, her face washed, or her teeth brushed! HAHA. I am so grateful that she has an opinion about things.
Well, I have to get to work on Aicardi Syndrome Family Conference things. Thank you for reading!
Wednesday, May 19, 2010
Monday, May 17, 2010
Ellen Yay May/Tough times entry
Hi everyone! I hope if you are reading this that you will forward the link to this post to all your friends/followers and then help me by tweeting Ellen Degeneres, messaging her on facebook, or doing entries on her show's webpage. I really need help! Please read...
Ellen-I'm not down because I have a daughter w/disabilities or that I will probably never hear her say I love you mom or feel her arms hugging me. I’m not upset that I have to change a 12 yr old’s diaper or watch her have daily seizures (even though it breaks my heart). I feel blessed that I was chosen to be her mom. I’m even trying to find the “reason” behind my current situation, but it gets hard. I’m a single mom of 2, was just evicted & about to lose my wheelchair ramp van. We are living in 1 bedroom of someone else's home w/all daughter's supplies. Can lose van bc that’s how I get her to dr. appts/school. I teach students w/disabilities & am actually nominated for “Special Education Teacher” of the yr for my county. Little does everyone know that behind the smile/hard work is a breaking heart bc I can’t provide for my kids like I should. We do NOT qualify for ANY assistance (even my daughter). No child support. Credit cards maxed/behind ($5000). Got this way bc she was in ICU, then I broke ankle/needed surgery/cast-ALL time off w/o pay. Have sr. year expenses for my son also. I’m working on my doctorate to make more money & can't work 2nd job bc have no care for her. I'm really trying to "dance" & see the light at the end of what seems to be an eternal tunnel, but it's getting harder & harder. I’m actually Thank you for helping me laugh everyday & appreciate that I’m not the only one in this kind of situation. I really need you Ellen!
Ellen-I'm not down because I have a daughter w/disabilities or that I will probably never hear her say I love you mom or feel her arms hugging me. I’m not upset that I have to change a 12 yr old’s diaper or watch her have daily seizures (even though it breaks my heart). I feel blessed that I was chosen to be her mom. I’m even trying to find the “reason” behind my current situation, but it gets hard. I’m a single mom of 2, was just evicted & about to lose my wheelchair ramp van. We are living in 1 bedroom of someone else's home w/all daughter's supplies. Can lose van bc that’s how I get her to dr. appts/school. I teach students w/disabilities & am actually nominated for “Special Education Teacher” of the yr for my county. Little does everyone know that behind the smile/hard work is a breaking heart bc I can’t provide for my kids like I should. We do NOT qualify for ANY assistance (even my daughter). No child support. Credit cards maxed/behind ($5000). Got this way bc she was in ICU, then I broke ankle/needed surgery/cast-ALL time off w/o pay. Have sr. year expenses for my son also. I’m working on my doctorate to make more money & can't work 2nd job bc have no care for her. I'm really trying to "dance" & see the light at the end of what seems to be an eternal tunnel, but it's getting harder & harder. I’m actually Thank you for helping me laugh everyday & appreciate that I’m not the only one in this kind of situation. I really need you Ellen!
Saturday, May 15, 2010
Ah, diaper in the van
Well, let me first say that changing a stinky diaper of a 12 year old is NOT a fun thing - but something I don't mind. A girl's gotta do what a girl's gotta do (applying to both Dakotah and I-lol). Anyway, where it gets real fun (NOT) is when I have to change her is the backseat of the van. I have a mini-van with lowered floors so at least I have the head room to lift her out of her chair and lay her on the seat, but let me tell you - Miss Priss is 4'7" now and does NOT fit length-wise in the seat anymore and she's too heavy to lay on the floor of the van. Sure, I can get her down there, but my back just can't get her back up (safely anyway). Today's diaper change was even better than usual because guess what?!?!?!?!?! No wipes in the van. Soooo, I had to use extra diapers (wasting what I already have to fight to get or have to buy myself). I managed to get her clean, get her back in her chair and then into dinner at a restaurant. She was very happy and I got to enjoy my dinner!!!
Even doing hair is an ordeal
Well, Miss Dakotah has the curliest hair ever - I put a texture relaxer in it this morning. For the typical developing child, this would not be something to blog about, but for us, it is. Since Dakotah has very poor head control, I had to carefully plan how I was going to do this w/o getting this product on her skin or in her eyes. I geniusly figured out how to put the bathchair in the bathroom (not actually in the tub) where the head portion would be over the tub. I got her situated and strapped - thank goodness for straps bc w/o them, she would've wriggled off the chair. Of course the directions say, "Detangle the hair first". Well, let me tell you, detanging hair is one of Dakotah's LEAST favorite things to do. It ranks right up there with toothbrushing.
I got it detangled and started applying this cream - first time user so I was silently praying that it would work and that all her hair wouldn't fall out. Mommy's already been there and done that (had to wear a wig and all) so I didn't want that for her. My back was killing me at this point because I had to bend over to apply, rinse, and then shampoo her hair.
Once I got her back to the bed, I had to sit her up - again, another strategic event because I had to sit behind her, positioning my legs and knees just right behind her so she wouldn't fall back, but not too much or she would have fallen forward. (See, so even if your daughters whine about having their hair done, at least they are sitting up unassisted - lol). I have to support AND I still get the whining.
Anyway, it worked, it relaxed it so well but left some of the curl. It's so much easier to comb through and put into her pig tails. I finally decided to cut the back portion at the nape of her neck. It doesn't grow well bc of where her headrest is on her wheelchair so it just looks so much better being short.
After about an hour - yes, an hour - her hair is done and looking quite cute. I'll take pics later when I get her up in her wheelchair.
Tomorrow will another ordeal.....bathtime....... :-)
I got it detangled and started applying this cream - first time user so I was silently praying that it would work and that all her hair wouldn't fall out. Mommy's already been there and done that (had to wear a wig and all) so I didn't want that for her. My back was killing me at this point because I had to bend over to apply, rinse, and then shampoo her hair.
Once I got her back to the bed, I had to sit her up - again, another strategic event because I had to sit behind her, positioning my legs and knees just right behind her so she wouldn't fall back, but not too much or she would have fallen forward. (See, so even if your daughters whine about having their hair done, at least they are sitting up unassisted - lol). I have to support AND I still get the whining.
Anyway, it worked, it relaxed it so well but left some of the curl. It's so much easier to comb through and put into her pig tails. I finally decided to cut the back portion at the nape of her neck. It doesn't grow well bc of where her headrest is on her wheelchair so it just looks so much better being short.
After about an hour - yes, an hour - her hair is done and looking quite cute. I'll take pics later when I get her up in her wheelchair.
Tomorrow will another ordeal.....bathtime....... :-)
Thursday, May 13, 2010
Pretty uneventful day, but that's a good thing
Well, today was a good day. No calls from the school nurse that Dakotah had a seizure. Got her to school on time. She was watching Monsters, Inc. at Extended Day when I picked her up. Had to pick up prescription seizure meds today. She's snoring now (it's 9:30 p.m.). Gotta get that Breathe-right strip on her - they really work. I'm watching Top Model Finale from last night.
this sharing a room is really hard. I'm a late night person so I feel so bad for keeping the t.v./computer on so late. But, that's what happens when you don't have your own place and are living with friends (for that I am so grateful).
Tomorrow is Friday - hurray! We get to sleep in Saturday and trust me, Miss Dakotah loves to sleep in!
this sharing a room is really hard. I'm a late night person so I feel so bad for keeping the t.v./computer on so late. But, that's what happens when you don't have your own place and are living with friends (for that I am so grateful).
Tomorrow is Friday - hurray! We get to sleep in Saturday and trust me, Miss Dakotah loves to sleep in!
Wednesday, May 12, 2010
Noisy Progress
So, I got some good news today from Dakotah's teacher. She is being much more vocal now. She has found a new pitch and volume level in her voice and really, really likes to hear herself. She started doing it for me last week and now it's carried over to school. It's funny because her teacher asked me this morning if I thought she was having a new kind of seizure - I said, "No, I think she just likes to hear herself." It's so funny because she really screams but it is a good scream and it's progress. It's noisy progress (and I have to turn up the volume on the t.v. now) but it's PROGRESS!!!!
Mornings
My morning routine is a little different than most moms - even if they are single moms. I have to feed & administer seizure meds to my daughter via a feeding tube, change her diaper, dress her, and put on her AFOs (foot braces). She cannot assist me so I am turning and lifting 72 lbs. all by myself. Once she's ready, I lift her to put her in her wheelchair.
Right now life is even more different for us because we do not have our own place. We are living in a bedroom at a friend's house. I am so grateful to them, but it's hard. I am a late night person and the t.v. and computer light sometimes wake her up. Sometimes when she wakes up she'll have a seizure - not fun - and then I feel really bad.
Well, have to get ready to go to work - I teach middle school students with learning disabilities. I will be back tonight to explain why we currently/temporarily don't have a place of our own.
My daughter
Many people say, "Oh, I'm so sorry!" when they meet my daughter and me. I understand why they offer their sympathy or maybe empathy but I don't agree. You see, my daughter was born with a rare syndrome, Aicardi Syndrome. Her life expectancy is unknown. She is 12 years old now and is still in diapers, cannot roll over or sit up, has a feeding tube and daily seizures. She is on daily medications to help control her seizures.
When she was born I thought I had a healthy baby. Little did I know that in 2 months from her birthdate, my world would be rocked. She started having the seizures when she was 2 mos old. After an MRI, they found 4 cysts in her brain. They successfully drained them and I spent my first Mother's Day with her in the ICU @ St. Pete Children's Hospital. Two months later, my world was rocked even harder when she was diagnosed with Aicardi Syndrome. The life expectancy of girls with this syndrome is unknown and many girls to make live past their teens. She is already beating the odds.
I decided long, long ago when she a little baby that there was no point in me sitting around feeling sorry for myself. Sure, I was sad that there was the possibility (now probability) that I wouldn't have mom/daughter talks with her like other moms and daughters do. She's 12 now and instead of buying her make-up or nail polish, I'm buying bibs and diapers. But guess what? I'm glad that I'm buying those things bc that means she still here with me. Don't get me wrong, I have my days when I get down. I see other little girls that are younger than Dakotah doing way more than she can. I see them calling their mom "Mommy" (this I think is one of the hardest things).
I will tell you now that I do not view her as burden, but rather a BLESSING. She has taught me so much about appreciating the small things in life. She has affected my life in a positive way and for that I am grateful. She has given her older brother an appreciation for all the athletic things he can do - the fact he can run up and down a soccer field.
I am starting this blog in hopes of journaling my journal as a single mom to a child with a disability. Life is always easy and we don't always get what we want, but it's what we do with what we have been given that makes all the difference in the world.
When she was born I thought I had a healthy baby. Little did I know that in 2 months from her birthdate, my world would be rocked. She started having the seizures when she was 2 mos old. After an MRI, they found 4 cysts in her brain. They successfully drained them and I spent my first Mother's Day with her in the ICU @ St. Pete Children's Hospital. Two months later, my world was rocked even harder when she was diagnosed with Aicardi Syndrome. The life expectancy of girls with this syndrome is unknown and many girls to make live past their teens. She is already beating the odds.
I decided long, long ago when she a little baby that there was no point in me sitting around feeling sorry for myself. Sure, I was sad that there was the possibility (now probability) that I wouldn't have mom/daughter talks with her like other moms and daughters do. She's 12 now and instead of buying her make-up or nail polish, I'm buying bibs and diapers. But guess what? I'm glad that I'm buying those things bc that means she still here with me. Don't get me wrong, I have my days when I get down. I see other little girls that are younger than Dakotah doing way more than she can. I see them calling their mom "Mommy" (this I think is one of the hardest things).
I will tell you now that I do not view her as burden, but rather a BLESSING. She has taught me so much about appreciating the small things in life. She has affected my life in a positive way and for that I am grateful. She has given her older brother an appreciation for all the athletic things he can do - the fact he can run up and down a soccer field.
I am starting this blog in hopes of journaling my journal as a single mom to a child with a disability. Life is always easy and we don't always get what we want, but it's what we do with what we have been given that makes all the difference in the world.
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