Jenna
Three and a half years ago we began our foray into the special needs world. Our steps were slow and tentative, not knowing where this path would take us.
One of the first families I met was Tasha and her daughter Jenna. I still remember walking into the physio room at the Children’s hospital in the city and seeing the halo of blond curls that is Jenna’s trademark. We had no idea, then, that our girls would become fast friends.
A few months later I walked into the building where the local physio/support group for special needs kids was being held in our small town. I was surprised to see the familiar blond halo of curls there. I had no idea that Tasha and Jenna lived out in our area, since we had first met them in the city, but it was reassuring to know at least one family there.
Over the years the girls have grown together. We’ve watched them learn to walk, learn to talk, learn to run, and learn to get into enourmous amounts of mischief for two little girls who look so innocent.
They started preschool together last year, happy to play with the other kids in the class, but also happy to sit and hold hands together during circle time.
As the girls became friends, so did Tasha and I. A bond formed over diagnosis’s, doctors, and treatment plans. It was comforting to have someone I could compare notes with, commiserate with, and celebrate the milestones with.
For the past few years, Tasha’s mom has run our special needs group. She is the rock we all turn to. And Vista knows her as Grandma. She is as much family as anyone we’re related to.
Tasha’s boys go to the same school as Vista. They’ll always stop to say hi to her and give a little brotherly hug.
Tasha and her family have become an important part of our world.
But that world was rocked when Tasha’s daughter ended up in the hospital on last Friday.
A hospital stay for Jenna, in and of itself, is nothing unusual. But it was quickly apparent that this wasn’t going to be her normal get-sick-crash-bounce-back routine.
Since last Friday, Jenna has been in the ICU at the Children’s hospital. She’s on a ventilator. She’s flat-lined several times and been resuscitated several times. And everyday seems to bring a new round of complications. Pneumonia, hMPV, bleeding in the lungs, pulmonary hypertension, sepsis, low hemoglobin, the list goes on and on.
Jenna is a fighter, but she is sick. So very sick right now. And no one is sure if her little body can stand up against the onslaught it’s under.
So if you have a moment, could you send some good thoughts, positive vibes, and prayers their way?
They have a long road ahead of them and they could use all the support they can get.
Paging Dr. Freud
Vista, at the ripe old age of 4, is a master manipulator.
She’s smart. Waaaay too smart. And she knows exactly how to play people.
I watch her do it with her therapists when she’s not in the mood to work with them. She’ll play dumb, bat her eyelashes, cock her head to the side, smile, and give a ‘I don’t know’ shrug. At which point we’ve now trained her therapists to glance over at me, where I can give a slight nod to indicate ‘yes, she knows this. She’s just fucking with you right now.’
The other day she was throwing a fit while getting ready for school. It was only 7:30am and I had already had it. So I looked at her and told her to drop the attitude. She stopped, cocked her head to the side and gave me the biggest smile. In return, I rolled my eyes at her. ”Nice try. That might work on some people, but it doesn’t work on Mama.”
Without missing a beat, she let the smile drop and told me, “It works on Daddy.”
*snort*
Yeah, my kid’s no dummy.
This morning she was being a typical four year old, running around and not listening to a thing we had to say. After 5 hours of this, Bil was understandably tired of it and told her “Enough. You need to start listening to Mommy and Daddy. You haven’t been listening at all this morning!”
Again, without missing a beat, she turned to him with a straight face and asked him “Why do you think that is?”
That *boom* you heard was Bil’s head exploding.
Cranky
Vista is slowly coming down from the two weeks of oral steroids she was on over Christmas for her asthma. It’s hard to say when she’ll be back to ‘normal’. But it’s definitely showing in her behaviors.
Her teacher commented on it at preschool on Monday. When ever one of the kids would approach her she would scream and throw a fit (see: How to win friends and influence people).
Aaaaand that would be why we’re thankful she has an aide in class with her. To deal with the situations like that.
At home, though, there’s no aide. Just us. It makes for some long days. Add the fact that the steroids interrupt her sleep patterns and you have long nights too. And I’m one of those people who NEEEEEED to sleep. I love my sleep. I covet the sleep I used to get pre-kid. Lack of sleep = very cranky Jenn.
And that in a nutshell is why I haven’t been on the interwebs lately.
Cranky kid + cranky parents = not fit for human interaction.
But we’re slowly getting back to normal around here. Whatever normal means. If someone figures that out, let me know.
What We Have Here is a Failure to Communicate
It’s hard when you’re trying to discipline your child by telling her that she’s lost TV privilages for the rest of the night and she helpfully suggests you should take away her dinner too.
*headdesk*
Trying to figure out a way to discipline a special needs kid who is completely oblivious to the fact they’re being disciplined? Well, lets just say it’s an exercise in futility. No matter what you say or do, there’s only one loser in the situation and it’s ALWAYS the parent.
It’s hard not to get even more frustrated trying to get them to understand they’ve done something wrong, when it’s obvious they have a complete lack of understanding around the entire situation.
Sometimes it makes me wonder if my kid will grow up to be a complete sociopath. How can you have remorse when you don’t get that you’ve done anything wrong?
All this came up today after she purposely broke another one of her toys. Why? Because she didn’t want it anymore.
This is a common occurrence and it frustrates us to no end. We’ve tried to explain to her that if she doesn’t want to play with a toy, that she can bring it to us and we can give it to another little boy or girl who doesn’t have toys. But that hasn’t yet sunk in. We’ve tried making her throw the toy out after she’s broken it, but she’ll happily do it. She just isn’t that attached to anything.
And midway through the discussion on why she broke her toy, she burst into hysterics because she wanted her old white bed back. Yeah. Six months after we redecorated her room and moved her into a big-girl bed and we’re still experiencing fallout from it.
Oy. There are days when being a special needs parent is, well…special.
This and That
So much going on and yet I still manage to avoid posting here.
There was that whole Halloween thing. We carved pumpkins.
Guesses on who picked out which pattern?
Vista’s doing well in pre-school. She still has her aide with her and I really think that’s made all difference. There are still challenges though. There always will be. But there easy to forget when your kid brings home school pics that look like this:
We’re still waiting to find out when her spinal MRI is. If we get it by next summer, I’ll be thrilled. In the mean time we have to check in with the doctor once a month so he can check her reflexes to see if they’ve magically returned.
We’re still waiting on results from genetic tests too. It’s been a year and a half. They’re telling me it could be another year still. Two and a half years for one test. Awesome.
I’m finding when you’re a parent of a special needs kid that patience is a virtue. It just doesn’t happen to be one of MY virtues.
Priceless
Leather couch and La-Z-Boy recliner: $2500
Ikea Kura Bed and mattress: $300
Custom book nook: $50
Still being able to fit in a laundry basket: Priceless
Silly Simple Words
Thank you to everyone for your hugs and love over the past few days. They’re both needed and appreciated.
We’ve been watching V like a hawk the past few days.
Super vigilant and on high alert. The ultimate helicopter parents.
It’s hard not to be.
Luckily though, it seems like the after effects from V’s seizure are mild.
She was a bit unsteady on her feet Sunday morning, but that has corrected itself, and we haven’t seen any other physical issues.
There doesn’t seem to be any behavioral issues from the seizure, either (everyone cheer!!).
It looks like this seziure went after her language center instead.
She’s had seizures in the past where she lost words, and when as a toddler you only have a few words to begin with, it meant she lost her ability to speak.
Thankfully, this isn’t the case this time.
But it’s the weird things that you take for granted that hits you like a punch in the gut when you least expect it.
Last night V wanted to dress up as a kitty cat. She loves to dress up as a cat with a nose and whiskers painted on her face using my eyeliner. A couple of weeks ago, I ordered a cat costume for her off Etsy. Just a little set of ears and a tail. And so last night when she wanted to dress up, I mentioned that we’d have to wait for the costume to come in the mail.
“Mail?” she said. ”You mean like press send?”
“No sweetie,” I replied. ”Not email. Mail. It will come to the mailbox and then we can go get it.”
“Mailbox?” she looked at me confused. ”What’s mailbox?”
“You know… a mailbox… don’t you remember how we walk to the mailbox to get the mail?”
A memory. A word. Something simple, and really, without a lot of meaning. But *poof*, it was gone. She had no idea what I was talking about.
I saw it again this morning. She wanted to dress up in one of her play silks.
“Can you tie it around my elbow?”
I looked at her, “Where do you want me to tie it?”
She pointed at her shoulder “My elbow.”
I sat next to her and gently said, “That’s your shoulder, not your elbow. Where’s your elbow?”
She again pointed to her shoulder.
We proceeded to do a body inventory. Body parts she’s known and been able to name for years.
She knew where her knee was, but the word ankle was also missing for her again.
*gut punch*
Silly simple words. Word I know will come back. Words I know we can easily correct and reteach her if we need to.
But, oh those words.
Their absence says so much.
Please Send Comfort Food
I’m one of those people who can cry at the drop at the hat, sometimes. If I’m frustrated? Waterworks. Angry? Yup, I’ll tear up. Watch that commercial on TV with the cute kid? Well, you get the idea.
I’m having one of those overly emotional days, today.
Vista had a bad seizure last night. It took her a long time to come out of it, which is very unusual for her. Usually her seizures are short, and she’s fine right after them.
This one lasted longer and when we were finally able to wake her up after it, she couldn’t tell us her name. She fell back asleep, which meant we had to continue to try to wake her up every little bit, trying to bring her out of the post seizure and make sure her cognitive functions returned.
Let me tell you… when you can’t wake up your kid, it’s scary. V’s notoriously hard to wake up at the best of times. But this? This was different. This was holding a ragdoll in my arms. And just when we thought she might open her eyes she was gone again.
When we finally started to get some response out of her and I was coaxing her to open her eyes, she told me she couldn’t. She was trying, but her eyes wouldn’t open. Gah!
It took almost an hour for her to fully return. That is a loooong 60 minutes of debating whether to bring her into to the ER, chatting with an on-call nurse, and repeating “Vista, sweetie…wake up and open your eyes for Mama” over and over.
This kid is seriously going to give me a heart attack.
She’s better this morning. A little off on her balance, but otherwise seems to be alright.
I’ll be calling her neurologist on Monday morning to see if they want to do some level checks for her meds, since she’s had a couple growth spurts over the past could months.
But the fact that this seizure was so different than her normal ones… doesn’t sit well with me.
It makes me nervous that they’ll want to talk brain surgery again. Which REALLY doesn’t sit well with me.
So while I’ve been doing the classic ‘worry about things you have no control over’ this morning I realize… wait… where the hell’s my cat?
I haven’t seen him since yesterday.
He always comes home. Several times a day. To eat, and get pets, and shed all over my floors.
But, no sign of him.
I couldn’t be Bil’s annoying useless cat that goes missing. Noooo…it has to be my cat who I love and adore.
*sigh*
So I quit this weekend. And in lieu of crying I’m eating ice cream, and carbs, and other random junk. Please send wine and margaritas to wash it all down.
It Started With A Simple Stencil
I’ve been wanting to repaint Vista’s room since before she was born.
In fact, I had this whole beautiful nursery planned out. But V had other plans with her early arrival.
And so her room went unpainted.
Instead I stuck up some Winnie-the-Pooh decals and, later, Disney Princess decals. But anything within her reach was quickly pulled down. So, her room was a very stark and drab, with it’s beige walls and white furniture. And it’s been like that for 4 long years.
I finally decided I was sick of looking at it and made up my mind that this summer we were giving her room a paint job. It was way past time she had a room fit for a little girl.
So, I did what any geek would do. I scoured the internet looking for ideas.
The only thing I knew was that decals were out, as far as decorating went. Other than that, I was at a complete loss as to what to do with her room.
After months (yes. really. months) of looking, I finally settled on a design of pale green walls with pink and white accents.
But, once again, V had other plans.
I was looking at a wall stencil site one evening when Vista crawled onto my lap.
She immediately pointed to a picture. ”That. I want my room to look like that.”
I brought up some other pictures for her to look at, but she wasn’t budging. She wanted fairies on her wall and the walls better be pink… or else.
So I did what any parent would do. Caved and bought the stencil package (never mind the fact I’ve never stenciled anything in my life).
And things just went downhill from there…
This is what the room looked like before we started (well, we had gotten as far as clearing stuff out of her room, removing the horrid shelving units from her closet and wall cubby and patching holes before we had an ‘Oh crap…we need before pics!’ moment)
Her armoire (complete with tacky Disney Princess decal) and bed. Her bed was one of those crib- to -daybed-to-full bed deals. I love her bed. She, of course, hates it.
Her massive dresser and the weird in-the-wall cubby hole. The cubby in the far corner originally had a wire shelving unit in it. It came that way when I bought the place and I just never bothered to remove it, despite my intense loathing for the thing. I figured since we were pulling it out to paint, it could stay out.
The closet also had a horrid wire frame shelving unit in it. Buh-bye.
Vista’s room is fairly small, with several large pieces of furniture. Too many large pieces. One of them had to go. Which kinda made me sad because I really like her furniture.
We made the decision to take the armoir out and got it as far as the living room before realizing that the thing weighed a billion pounds and there was no way we were going to be able to carry it downstairs to the spare bedroom as we had originally planned. We *might* have had an ‘Oh shit’ moment before Bil came up with the genius idea to put it in our kitchen as an extra storage pantry. Since our appliances are all white, it fits in nicely. And also makes me want to redo all the kitchen cabinets so that they’re white too. And maybe refinish the kitchen table. It’s funny how projects snowball, isn’t it?
Well, Vista’s room was no exception. It started with a simple stencil kit. It ended up being a total room makeover.
After pulling the armoire out, we decided it was probably time to get Vista a full sized mattress. She’s been complaining that her bed it too small for a while. She’s also been begging me to paint her bed pink. I really, really, don’t want to do that. Really. Like I would cry if I had to. So instead we headed to Ikea to look at new (cheap) beds. Because we’re giant suckers and our daughter is spoiled. Oh, like you wouldn’t do the same.
We wandered around the kids bedding section at Ikea for an hour. The single beds were ugly. The full size beds would be to big for her room. Well…this wasn’t working out how we had planned.
We saw a loft bed that we thought might work, but the reality is we would have to make huge modifications to it in order to make it safe for V to go up and down right now. That sounded like work. And effort. Neither of which I’m terribly fond of. But, wait! We found out that same bed can be flipped upside down! Twin bed today, loft bed if she ever get’s coordinated enough to handle it. Those crazy Swedes.
So we had our new bed. And then we decided, oh what the heck… lets find a shelving unit to go in the closet while we’re here.
And of course a new bed means new sheets and comforter.
Oh, and then we saw this adorable light fixture that was just PERFECT!
(You see where I’m going with this…right?)
Yeah.
That $80 stencil kit turned into a $1500 complete room reno.
Which we are going to invoice her for on her 18th birthday. Plus the cost of labor, because ZOMG it was a lot of work.
So….
*drumroll*
This is how the room turned out (and it’s still a work in progress).
The new bed. I hate the canopy on it. I wanted to do some pretty pink drapes or something more feminine. V and Bil love the ‘tent’. I totally got out voted.
The walls look like a pale pink in this picture…they’re actually quite a bright pink. I had a bit of buyers remorse on the paint once we got the second coat on, because, ZOMG, it’s a lot of pink.
On the to-do list is to paint the wooden bed frame in either a dark pink or white (what say you, my readers?). I just ran out of time this weekend.
The ugly cubby was painted a darker pink and turned into a little reading nook. I still need to find and put up some little book shelves on the far wall of it.
We ended up, with taking the armoire out and the new furniture arrangement, being able to put V’s toy kitchen in her room. And she still has more floor space then she had previously. Bonus.
A close up view of the cubby and the wall stencil. V was totally head over heals in love with this mushroom stencil. I’m pretty sure that means she’ll be a drug addict when she’s older.
Rather than a shelving system, typical of closets, we opted for a wooden bookcase type unit. I like how it recesses into the closet, but still has plenty of storage space.
The stencil as you walk into the room. I have to say I’m really happy with the look of the stencils. They can be a bit of a pain to place on the wall properly, then time consuming to paint (especially if you want to layer them). But the final results are amazing and totally worth the effort.
I only had time to get a couple stencils on the wall, but I will be adding more in the weeks to come.
Overall, I’m happy with how things turned out (I could have done without the attached price tag, though, but hey).
Now… to do something about those kitchen cabinets…
Girls with Guitars
Sunday morning
Guitar
Tutu fashionista
Rock on little girl
