This is the story of my life as a SAHM to a deaf-blind former 24 week preemie. Isolating, frustrating, heartbreaking, and so worth it.
Tuesday, September 30, 2008
Preschool Logic
Noah was walking around with a bubble wand around his nose. When I asked him what he was doing he said, "I'm blowing my nose."
Friday, September 26, 2008
What Noah's NOT learning at school...
Noah understands that letters make sounds. He can usually tell you what letter sound a word starts with fairly accurately. Sure, he thinks that gym starts with a "j" and cracker ("cwacker") starts with a "q", but he's only 3! Noah also understands that you put letters together to make up words. I'm constantly finding things like this on my refrigerator.
Unfortunately he hasn't learned what letters go together to make up words yet. He sure likes to practice, though! There's a future spelling bee champ in there somewhere.
Thursday, September 25, 2008
Crazy
I'm going to see the surgeon tomorrow and I'm quite anxious. Not about the surgery appointment - it really is a relatively minor procedure if I do end up needing it. Nope, I'm anxious about about the place.
When I was 24 weeks pregnant I got the "flu" or so the on call OB assured me (who gets the flu in May?). After 2 days of dealing with the "flu" with almost constant pain, headaches and vomiting I went to camp out at the OBs office to get some answers. While when I first arrived they assured me that I indeed had the flu, a urine sample and a BP check later I was in L&D triage getting labs drawn and meeting with the perinatalogist.
The first time I went back for my yearly GYN appontment they put me in the same room where I went that day and by the time the doctor arrived I was a sobbing fool. The nurse thought I was crazy, but the doctor understood and just patted my knee soothingly until I calmed down. I was sooo happy when the practice finally moved to a much needed larger space - in another building.
Since that time I've done my best to avoid that building. I have my lab work done at the office on the far side of town rather that set foot in that building and deal with the memories. Too bad the only surgeon that my doctor recommends is in that same place...
One of these days I'll deal with my emotional issues surrounding Noah's birth. Years from now I'll look back and laugh and that awful feeling that I get in the pit of my stomach every time the phone rings, and maybe someday I'll stop running in alarm to his room whenever he sleeps later than I expect. For now I guess I'll just be grateful that I have a wonderful husband who answers the phone, checks that Noah is breathing before he leaves for work, and goes with me to appointments in that dreaded place. I might be crazy, but at least I'm loved.
When I was 24 weeks pregnant I got the "flu" or so the on call OB assured me (who gets the flu in May?). After 2 days of dealing with the "flu" with almost constant pain, headaches and vomiting I went to camp out at the OBs office to get some answers. While when I first arrived they assured me that I indeed had the flu, a urine sample and a BP check later I was in L&D triage getting labs drawn and meeting with the perinatalogist.
The first time I went back for my yearly GYN appontment they put me in the same room where I went that day and by the time the doctor arrived I was a sobbing fool. The nurse thought I was crazy, but the doctor understood and just patted my knee soothingly until I calmed down. I was sooo happy when the practice finally moved to a much needed larger space - in another building.
Since that time I've done my best to avoid that building. I have my lab work done at the office on the far side of town rather that set foot in that building and deal with the memories. Too bad the only surgeon that my doctor recommends is in that same place...
One of these days I'll deal with my emotional issues surrounding Noah's birth. Years from now I'll look back and laugh and that awful feeling that I get in the pit of my stomach every time the phone rings, and maybe someday I'll stop running in alarm to his room whenever he sleeps later than I expect. For now I guess I'll just be grateful that I have a wonderful husband who answers the phone, checks that Noah is breathing before he leaves for work, and goes with me to appointments in that dreaded place. I might be crazy, but at least I'm loved.
Monday, September 22, 2008
Updates
1. Noah no longer cries all day at school. He still cries if we leave him at church, but since he's moved up to the 3s and there's a new batch of nursery workers we've been staying with him each week to train them on the CI, what he can/can't see, etc.
2. Either Noah is super smart or his teacher is amazing. Probably both. He's currently a calendar expert and quite the meteorologist. The other day he was at the playground and the sun was glaring down at him. He looked at me and said, "Mommy, I need a cloud."
3. Pulmocort does make Noah vomit more than normal. Flovent doesn't. We really like Flovent.
4. Everyone at school has been absolutely wonderful, and for that we are so grateful. Unfortunately the HI teacher has yet to show up at school. I'm sure she'll be great too, if we ever see her. I'm going through appropriate channels and trying to be assertive but not nasty. We'll see how long that lasts.
5. Noah thinks our house in a jungle gym and is currently scaling the entertainment center in search of an elusive movie case that he thinks I've hidden on top. I actually have it with me, but that probably won't keep him from breaking his neck.
2. Either Noah is super smart or his teacher is amazing. Probably both. He's currently a calendar expert and quite the meteorologist. The other day he was at the playground and the sun was glaring down at him. He looked at me and said, "Mommy, I need a cloud."
3. Pulmocort does make Noah vomit more than normal. Flovent doesn't. We really like Flovent.
4. Everyone at school has been absolutely wonderful, and for that we are so grateful. Unfortunately the HI teacher has yet to show up at school. I'm sure she'll be great too, if we ever see her. I'm going through appropriate channels and trying to be assertive but not nasty. We'll see how long that lasts.
5. Noah thinks our house in a jungle gym and is currently scaling the entertainment center in search of an elusive movie case that he thinks I've hidden on top. I actually have it with me, but that probably won't keep him from breaking his neck.
Sunday, September 14, 2008
Happy Due Day, Noah!
Three years ago today I baked a cake, stuck a "zero" candle on top, and shared it with all the other families at the Ronald McDonald House.
Noah celebrated the day by getting pulmonary hypertension and being revented.
I hate it when people tell me that God doesn't give you more than you can handle. He sure gave me more than my share! I've had my bitter days, but over time I've come to realize that He gave me more than I can handle for good reason. I'm one of those people who likes to handle everything myself. Since I'm in over my head I have to rely on Him.
Life would sure be different if Noah had been born today, but I'm not so sure it would be better.
Happy Unbirthday, sweet boy!
Noah celebrated the day by getting pulmonary hypertension and being revented.
I hate it when people tell me that God doesn't give you more than you can handle. He sure gave me more than my share! I've had my bitter days, but over time I've come to realize that He gave me more than I can handle for good reason. I'm one of those people who likes to handle everything myself. Since I'm in over my head I have to rely on Him.
Life would sure be different if Noah had been born today, but I'm not so sure it would be better.
Happy Unbirthday, sweet boy!
Friday, September 12, 2008
Mr. Cane
Noah has a new best friend. His name is Mr. Cane.
Noah and Mr. Cane have been together for 3 days and already Noah can hold Mr. Cane on his own. Sometimes Mr. Cane gets stuck on something and ends up behind Noah and then he gets confused but we're working on it. Noah also doesn't tap much, but Miss Karen says Noah probably won't be a tapper since he has some vision. Mr. Cane will mainly help him with depth perception and identify him as visually impaired so he doesn't get beat up if he runs into someone.
Noah and Mr. Cane have been together for 3 days and already Noah can hold Mr. Cane on his own. Sometimes Mr. Cane gets stuck on something and ends up behind Noah and then he gets confused but we're working on it. Noah also doesn't tap much, but Miss Karen says Noah probably won't be a tapper since he has some vision. Mr. Cane will mainly help him with depth perception and identify him as visually impaired so he doesn't get beat up if he runs into someone.
Noah really likes Mr. Cane. Today when we were leaving school Mr. Cane made a loud noise when he hit the metal doorframe by the step to outside. Noah looked at Mr. Cane, said "It's a step." and walked down with no prompting. Thanks for your help, Mr. Cane. Mommy feels much better knowing that you'll be with Noah when she's not there.
Sunday, September 7, 2008
Why I'm Stressed
- Noah cries all day at school and anytime at home that he thinks about school.
- Noah's stress is making his eating a challenge again.
- The word church makes Noah start sobbing.
- I will probably be needing surgery sometime in the next few months.
- As far as I can tell they don't make large print preschool Sunday School materials.
- Whenever we're in the car Noah cries and begs us not to take him to school/church.
- Pulmocort apparently makes Noah's reflux worse.
- Noah has a new AV therapist and his AVT center just moved to a new building. The only reason this hasn't led to sobbing is that he doesn't know yet.
Saturday, September 6, 2008
Deaf-blind is not the same as stupid
For a very long time I wouldn't tell people that Noah was deaf-blind. It was like I could handle each of his issues separately but together they were too much. As I got more used to the idea, I was shocked that most people didn't believe me. I got comments like, "He can't be deaf, he speaks." or "If he's blind why is he reading a book?". Most recently it's Noah's academic abilities that cause people to question our wonderful doctors' diagnoses. Apparently deaf-blind preschoolers aren't allowed to know their ABCs, the days of the week, or the difference between a pentagon and an octagon. If they do know those things, obviously they can see/hear just fine.
Newsflash: Noah has some vision and a cochlear implant. Those things really help. And as for the days of the week, I have to blame Rachel Coleman and her catchy songs. I never even tried to teach him that, he just knew it one day.
Newsflash: Noah has some vision and a cochlear implant. Those things really help. And as for the days of the week, I have to blame Rachel Coleman and her catchy songs. I never even tried to teach him that, he just knew it one day.
Thursday, September 4, 2008
Wednesday, September 3, 2008
First Day Activities
- cry
- walk the halls with your one on one aid
- cry
- ask for Mommy a lot
- cry
- have a productive 30 minutes of O&M Training walking around the parking lot looking at the different colored cars
- cry
- vomit
- cry
- refuse to eat lunch
- cry
- fall asleep 15 minutes before Mommy comes
Transitions
"Will there be shapes to play with at school?"
"I want to read a book at school today."
That was what Noah said to me as he was eating breakfast.
"I'm ready!"
That was what Noah said to his teacher when he got to the classroom this morning.
...And then he realized that Mommy wasn't staying.
We'd been trying to explain for weeks that Mommy would go home and Noah would stay at school, but he just couldn't fathom why I wouldn't want to be at a place as great as school.
When I was walking out of the building I saw him walking down the hall with his one on one, wailing and screaming to anyone who would listen, "I want Mommy to go to school too!"
"I want to read a book at school today."
That was what Noah said to me as he was eating breakfast.
"I'm ready!"
That was what Noah said to his teacher when he got to the classroom this morning.
...And then he realized that Mommy wasn't staying.
We'd been trying to explain for weeks that Mommy would go home and Noah would stay at school, but he just couldn't fathom why I wouldn't want to be at a place as great as school.
When I was walking out of the building I saw him walking down the hall with his one on one, wailing and screaming to anyone who would listen, "I want Mommy to go to school too!"
Subscribe to:
Posts (Atom)