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.
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.
Tricky Treats
Part of the fun of watching your kids growing up is watching them become more aware of holidays and the excitement that brings.
This is the first year that Vista’s really talked about Halloween. She’s over the moon whenever she sees a pumpkin (which might include trying to walk off with the pumpkins decorating the local coffee shop… oops!).
But I’m discovering that the older your kids get, the more work Halloween becomes.
First the costume.
Vista originally wanted to be a butterfly or a lady bug. And because I’m the obliging parent I dutifully looked for those costumes. And proceeded to veto both. Call me crazy, but I don’t think my daughter needs to wear a mini-skirt tutu to preschool.
We finally found a costume that satisfied both of us (cute enough for her, decent enough for me – with the option of being worn over a winter coat… welcome to Halloween in Canada).
Enter Little Red Riding Vista.
Either that or she’s a level 60 mage, casting a spell. We’re not sure which.
Anyway, with the costume issue checked off, I moved to the next thing on my list. Treats for her to bring to preschool. Which as any parent with kids know, this is a WHOLE lot harder than it sounds.
I was planning on doing up little treat bags for each of her classmates. Simple in theory. Until you factor in that Vista’s friend, J, who is also her classmate, has a severe anaphylactic nut allergy. And when I say serious, I mean I’ve seen this kid react after touching something that had been played with by another child who’d eaten peanut butter earlier in the day.
Oy.
So I checked with J’s mom to see what candy I could bring. I mean, surely there was lots of candy out there that’s peanut free… I just had to avoid the peanut chocolate bars, right?
Uh…yeah… wrong.
I had no idea that Halloween is so dangerous for kids with peanut allergies. J’s mom knew of only a few candies that were safe for these kids.
So off I trooped to the local store. And I read label, after label,… after label. Peanuts, traces of peanuts, may contain nuts.
*headdesk headdesk headdesk*
Are you kidding me?
In this day and age everything has nuts in it??
Back home I turned to the great Google in a quest for peanut free candy.
Low and behold, I find out that Canadian company, Allen Candy (their Easter bunnies have been a staple in our house for a loooong time) makes peanut free candy! YAY!!
They have Allan Intense Jubes & Jellies, Allan Chewy Rascalz and Allan Fruit Buddies*, all peanut free and enough to make great little treat bags for pre-school kids. Double YAY!
Now that that’s out of the way, the only thing left is to top last year’s jack-o-lanterns…
* For those of you also looking for peanut-free Halloween treats, Allen Candies can be found in retailers like Wal-Mart and Loblaws
Disclosure – I am participating in the Allan Candy Company program by Mom Central Canada. I received compensation for my participation in this campaign. The opinions on this blog are my own.
As The Seasons Change
Ahhhh… October. The changing of the leaves, the return of the pumpkin spice lattes, pulling the winter wardrobe out of storage…
What? Not everyone gets to experience the joy of packing away all the summer clothes and pulling out your winter outfits that have been packed away for the past…ummm…three months…?
It’s SO! MUCH! FUN! *cough*
I just love having to go through every single shirt and figure out if it still fits Vista or if it can go in the donate pile. Love it, I tell you! I can’t think of anything I’d rather do with an hour of my life. *sob*
Vista on the other hand is beside herself with joy. She’s a firm believer in the theory that a girl can never have too many clothes.
Every shirt she pulls out needs to be ooooooohhh’d and awwwwwww’d over. Then it has to be hugged. Like you would hug a long lost friend. Then she has to exclaim “Oh! My favorite shirt! I’ve missed it SO MUCH!!” over Every. Single. Shirt.
It’s a loooooong process.
Don’t even get me started on the absolute elation when she discovered the pile footie pajamas. She’s a footie girl, through and through. There might have been squeeing (on her part) and a few advil popped (on my part).
On the bright side, since she so excited about the new-ish clothes, she’s more than happy to help put everything away in the drawers. Child labour for the win!
The wardrobe change over does tend to highlight exactly how much your kid has grown over the summer, though.
I put a size 5/6 shirt on her this morning, thinking it would still be fine on my 4 year old. Uhhh, yeah… that would be a negative. Unless of course I was looking to send her to school in a belly bearing crop top. Oy.
I am thanking my lucky stars I stocked up on a bunch of size 7/8 winter clothes when they went on sale last spring, otherwise I’d be taking out another mortgage just to keep this kid in clothes.
Have you started the great clothes swap with your kids yet?
A Different Reason
As I sat having coffee with my mom a while ago our conversation drifted here and there.
We talked about how things were going with Vista, my brother’s move, my father’s asshole ‘friend’ who only calls when he wants my dad’s help with something (that’s a whole other post).
She told me about the movie her and Dad had seen the other day and how her friend’s daughter was getting married and she was trying to figure out what to get her as a gift.
We talked about the episode of Piers Morgan she saw where he interviews Joel Osteen and the pastor talks about homosexuality being a sin. ”Which is silly, really, because it’s not a sin. It’s just the way they are. People like to make the bible say whatever they want it to” explained my mom.
***schreeeeeeeech***
Wait… What?
I’m pretty sure my eyes must have popped out of my head. You see… growing up we were raised Catholic. And taught to believe that homosexuality was a sin. Which is probably part of the reason my brothers and I stopped going to church. We thought stuff like that was a load of … well, suffice to say, we didn’t agree with it.
But any time the topic came up when we were teens, my mom didn’t hold back on her opinion… opinions that fully agreed with the church.
“Ummmm… so…uh.. since when don’t you believe it’s a sin?” I raised an eyebrow at my mom.
“I’ve never thought it was.”
She sounded surprised.
I laughed.
“You used to.”
“I did?”
“Yeah Mom. Trust me. You used to be quite vocal about that subject.”
“Really?”
“Yup. But I guess that was before your aneurysm. You’ve changed a lot since then.”
*******
This year marks the 10th anniversary of 9/11. It’ll also be 10 years since my mom’s brain aneurysm almost killed her. She has no recollection of the terrorist attacks. Those days never happened for her. She was locked safely inside her mind, while her body was fighting to survive in the ICU.
The mother we knew went into that hospital. But a whole new and different person came out.
Ten years later I am still learning about this new person. About her likes and dislikes. About what she finds funny. About what her convictions are.
This person is different from the mother who raised me, and yet, she is still my mom.
For so many, September 11th marks the day that their worlds were forever changed.
The same is true for us… just for a different reason.
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.
There is no Mommy…Only Zuul
Vista tends to be a tad… emotional sometimes. I have no idea where she gets it from. Really. *cough* shut up *cough*
Add that to her penchant for taking things very literally and it can make for some… oh… say, interesting situations around here.
This evening was a perfect example.
We had been butting heads all day, so when Bil came home from work I quickly tagged out of the ring and took a breather.
But she wanted mommy, Mommy, MOMMMMMMMMY!
Bil tried his best to distract her and find out what she wanted, but nope. MOOOOOOOMMMMY.
I finally looked at her and replied “The mommy you have dialed is no longer in service. Please hang up and check with your father again.”
Did I mention my daughter is also stubborn? Again. No idea where that comes from. (shut it)
She gave a big huff. ”But Moooooooom….”
I looked at her with a smile “There is no Mommy. Only Zuul”
Instant. HYSTERICS.
She ran sobbing to her room. I raised an eyebrow and looked at Bil. He shrugged and followed after her.
I could hear him trying to decipher the source of the waterworks.
Vista: ”I waaaaant mommy!” *sob* *hiccup* *sob*
Bil: “OK. Well, she’s in the living room”
Vista: “No. That person said there is no mommy. Only Zuul. I don’t WANT Zuul. I WANT MOMMY!!” *more wailing*
Bil: “What person?”
Vista: “That person in the living room. They said there’s no mommy”
Bil: “Wait… you’re talking about Mommy? What Mommy said?”
Vista: “But there is no Mommy…..”
By this point I had to step in and intervene. I crawled onto her bed and picked her up and explained that yes, Mommy was here and we were just joking and there was no more Zuul, and so on. ZOMG… the DRAMA.
Half an hour later we finally got her calmed down enough that she would go play.
Me: “OK, lets go play before Mommy breaks your bed by sitting on it”
Vista: “Mommy’s going to break my bed?!? Waaaaaahhhhhhhhhhh”
Me: *headdesk* *headdesk* *headdesk*
Bil: *glare*
I’m pretty sure I’m banned from saying anything for the rest of the night.
