This morning started off nice and leisurely.
Vista got up, I made her breakfast, had a coffee. We were just kicking back.
I pulled up the weather site. Checked the temperatures. Cool. Hmmm… well, maybe if I bundled her up and threw her in the stroller we could go for a walk, since I’ve been saying for the last 6 months 2 months couple weeks that I was going to get out and start exercising. Then I could have my shower once we get back while Vista’s having a snack.
My nice little plan was starting to take shape – then the unthinkable happened – the phone rang.
I know? Who the hell calls at 8:45am? Even if they do know I’ll be up. Even if it is a weekday. Still.
Jenn: Hello *sounding a tad irritated*
Cindy: Oh hi Jenn, it’s Cindy. We have a 9am appointment for Vista and I just wanted to make sure we were still on.
Jenn: Oh of course! Come on over. We’re ready and waiting!
Cindy: Alright, see you in a few minutes!
I looked around at the living room, that hadn’t been vacuumed in two days, scattered with toys. Glanced to where Vista was sitting, still in her pajamas, hair not combed. Realized that I was wearing ratty house clothes, I hadn’t showered, teeth weren’t brushed, had an epic case of bed head and a ginormous zit had taken up residence on my chin.
And Vista’s early intervention worker was going to be here in 15 minutes to work with her.
I sprinted down the hall and grabbed the vacuum and did a 10 second tidy of the living room and hallway.
Grabbed some clothes out of Vistas drawers (matching is for pussies. And if Cindy says anything I’ll say V picked out the outfit. Yes. I’ll LIE). Threw them on the girl who was still sitting there watching me, trying to figure out what the hell was going on. Her hair. Oh geeze. Thank goodness she’s obsessed with hats. Grabbed one and threw it at her as I sprinted down the hall to my bedroom.
I cursed the fact that, of all days, I had to pick today to forget to check my calendar. Then made a mental note to thank Bil for throwing on a load of laundry, so I at least had clean clothes and made the mad dash into the bathroom. Blow dryer in one hand, toothbrush in the other. I realized I’m not that coordinated when I just about ended up with toothpaste in my hair.
I gave up on both and resorted to copious amounts of styling product and hairspray, and a good rinse with mouthwash.
Check the clock. 2minutes. Crud.
I critically examined the zit that was attempting to become a micronation. Grabbed the cover-up and did what I could.
Looked at the rest of my makeup… another glance at the clock. Dammit… guess I’m going au natural.
Ran out to the living room and got Vista to help me herd the animals outside. She’s giggling hysterically thinking this is great fun. Yeah….laugh it up chuckles… just you wait til you have kids…oh gawd…I’m becoming my mother…
Try to get around Vista who’s meandering back to the living room. Gave up and ran the other way around the kitchen island, jumped the steps down to the front door, and pulled it open as Cindy was coming up the walk.
I pasted a big smile on my face and welcomed her in while calculating in my head how many calories I just burned, because, really? I think I deserve an award… made of chocolate.
I had a great weekend. Yesterday we were out in the sun. We got Vista to play in the sprinkler for the first time, which seems stupid, but was hugely exciting for us. When you have a kid who goes into sensory overload in a shower or a spray park, getting her to voluntarily play in a sprinkler is a big, big deal. Isn’t she cute?? (Yeah, I’m a little bit biased. What’s your point?). And yeah, I know her bathing suit is too small on her, but, the kid won’t stop growing out of her clothes. I need to get a clothing sponsor for her or something. Seriously.
While we were celebrating this little milestone with her, we were silently doing a countdown of minutes until my parents arrive and we could go out for the evening. Not that we don’t love our daughter and enjoy spending time with her. But well…It was so nice to go to dinner and a show. Bil and I both agreed that we really needed it and we should do it every week, which isn’t remotely realistic, but hey, we can dream, right?
I booked us dinner reservations at the new Calgary Tower restaurant called Sky 360. The room rotates as you have dinner so you get a full view of the city. Fun! And the food? *swoon* Amazing. I may, however, have … forgotten… to mention to my darling husband that this was a bit of an upper scale restaurant (with the price tags to prove it). After he got over the initial sticker shock, he decided that the ride around the tower while we ate (although I think the waitress got tired of him asking if she could make the ride go faster) and the view (oh what a lovely view of the mountains) was worth it and let me order what ever I wanted. Yay! But the cost of dinner *cough* $200 *cough, gag splutter* means this will be a once a year thing. (princess pout)
After dinner we headed down to the show. FANTASTIC! If you ever get the chance to see Evil Dead: The Musical, go. Funny, irreverent, blood, gore, half naked women, and maybe a little girl-on-girl action thrown in for good measure. Oh! And I discovered, that Bullwinkle is actually a Candarian demon. Who knew?
We made the hour trek home to relieve my parents of their burden babysitting duties. Vista was great for them. No crying at all (which I didn’t really expect her to, she loves Grandma). But I guess there was a major puking episode. We have our theories on that. One of them being, when ever we change something on her, we have one of these episodes. Last time Bil went away for a week on business, she puked every day he was gone. He comes home, she’s fine again. So possibly a stress reaction in her? (when I was a kid, if I got too stressed, I would literally get myself so worked up to the point I’d get sick. Could this be the same thing?) But this is part of the reason I don’t leave her with teen-aged babysitters. Who wants to clean up a kid (and an entire room) covered in projectile vomit?
We ended up not getting to bed until midnight last night. Imagine my joy when my darling little girl decided that she missed her mommy so much that she wanted to get up at 1am to visit with her. Yay! (insert heavy sarcasm in here). Coaxing, cajoling, begging did not work to get her back down, so we got up and went to the living room for a few hours. I know there are people who are going to ask why I didn’t just leave her in bed and let her cry it out. Those would be the people who have never spent an hour, in the middle of the night, bathing your kid and disinfecting her room after she cries herself to the point of puking (which takes all of about two minutes). So, no…not an option unfortunately.
This morning her Early Intervention worker was scheduled to come for a visit. She called me at 9am to tell me she was bringing Vista’s speech pathologist and the areas new physiotherapist. Oh joy. Luckily we avoided major meltdowns during the visit as Vista knows and likes her EI worker, and has worked with the speech pathologist before, so only physio was new to her. She did, predictably, stick to her ’1 hour’ rule, where after an hour she decides she’s had enough stress and would like to have a bottle and go to bed, right now, please and thank you, and if we don’t go right now, I’m going to turn into a Candarian demon, like seriously, so woman, move your ass, get me a bottle and get me into that bed, like yesterday. Not that she actually says that, because, you know, she’s only two and doesn’t talk very well. But that’s TOTALLY what she’s thinking. I’m her mother. I know these things.
The visit was…meh. I get frustrated with the speech lady. Her answer to all my questions today was: Yes, Vista does have speech delays. Yes, she has some motor processing issues that are not helping those speech delays. Just keep doing what you’re doing.
Grrrr. What I am doing is OBVIOUSLY NOT WORKING! In 6 months we’ve seen very little improvement in this area of her development. So frustrated, I definitely am. Luckily this lady is on her way out, so I’m hoping whoever replaces her will have some more ideas for us to work with.
The new physio didn’t say much of anything. The EI worker and I talked about how crappy Vista’s balance is right now (as in she was standing at the coffee table this morning and suddenly fell over. No rhyme, no reason. You should see her arms and legs right now. Scratched, scabbed, and scarred from falling so much, lately). But no suggestions from physio lady. *sigh*
So I am frustrated. It hurts me to watch my kid walking on a perfectly flat surface and do a face plant. You want wrap them in bubble wrap to keep them safe. But I know that won’t help.
We are going to try some new shoes though. We think her summer sandals may just not be supportive enough, so I’m going to get some runner style sandals, to see if that helps her walking any.
Part of the problem is that she’s had another huge growth spurt so she has no idea where her center of balance is. Last week her feet were just in a size 8. This week, she’s almost out of a size 9. So yeah, she needs new shoes anyways. And although the fact that she bangs her head going in and out of her playhouse now, because she hasn’t figured out she’s had a growth spurt, is sort of funny, I’m afraid it’s going to leave a permanent bruise on her head.
In other non-whiny related news… I got Ali’s new site design up for her on the weekend. Yay! You should definitely go read her blog. She’s got a great post up right now on a very controversial topic, but she addresses it so well. She was the super easiest client to work with ever. Knew what she wanted and was able to provide great feedback as we worked to keep the design process flowing, so it took a week rather than the usual month to do a site. I seriously wish all the people I do work for were this awesome. Now go read her site. Shoo!
We live in a small town. It’s a fairly close knit community where if you don’t know someone directly, you probably know someone who does.
Being in a small town though sometimes means coming face-to-face with narrow minded thinking. When I lived in the big city and came across people like that, I could scratch them off my ‘get to know’ list, and move on to other people and places. In a small town that’s not always so easy. Because if I do what I’d really like to do and tell someone exactly what I think of them, it’ll probably come back to bite me.
I take Vista to a physiotherapy group session every other week. It’s supposed to be a good chance to chat with other parents who’s children are facing similar challenges and an opportunity for the kids to work on their gross motor skills and sensory integration issues. Which is great in theory. And the physiotherapist is really nice. So are the other therapists and early intervention workers who come to work with the kids. The problem is the other moms.
They’re complete bitches.
There. I said it.
Oh, I know… you’re thinking “Well, Jenn…perhaps it’s not them that’s the problem?”. Yeah. I was wondering the same thing until an incident a couple of weeks ago. But let me back up here…
The very first time I took Vista to this group, I hadn’t even had time to take off my shoes at the door before the other mom’s had sent one of their group to tell me to leave. I wish I was exaggerating. After I explained that the PT had invited us to be there, her only response was:
“Oh. Well. The other mom’s didn’t think you belonged here so asked me to come tell you to leave… but I guess if the PT invited you…”
Yeah. I know. Charming.
I figured it would get better after they knew we were supposed to be there. It didn’t. I found out why when one of the other moms came up to me after we’d been going to this group for a while.
Other Mom: “So, what are you doing here”
OM: “Why are you coming to this group?”
Me: “Because the PT felt it would be beneficial for Vista to attend.”
OM: “OK. But what’s wrong with her? She looks fine to me. I just don’t think you guys really belong here.”
And so we got to the crux of the matter. Vista ‘looked’ too normal for their tastes.
A couple weeks later, the PT having got wind of this conversation, took all the mom’s into a back room and had us talk about our kids. The other mom’s were more than a little surprised to find out that we face some of the same challenges with Vista as they do with their children. We had a long discussion about ‘not judging a book by it’s cover’ and how some issues aren’t always immediately visible unless you know what to look for. Vista, for example, can walk, but has balance issues and locks her legs for balance rather than using core muscles. This create problems with running or jumping. She also has midline issues where she favors one side of her body over the other. But all the other mom’s could see is: She’s walking, so she’s fine.
They were still cool towards me, until the week we got Vista’s MRI results back. When I shared that we had found out that she was missing a membrane in her brain and the other MRI findings, all of the sudden I had a new group of best friends and I was instantly accepted. I was stunned. Vista was still the same little girl she was the day she walked into that group, but now that she had something verifiable wrong…well…that changed everything.
Ever the optimist I thought perhaps the mom’s had learned not to judge to quickly. I was quickly proven wrong.
The next week a woman from the local Hutterite colony came with her daughter. When we arrived I saw her sitting off to the side on her own, so went over to chat with her. She was incredibly sweet and her daughter – adorable! But the other moms, true to form, didn’t even acknowledge her or speak to her. She told me the other day that she’s decided not to return to the group. And it’s not like I don’t understand why. It just makes me sad.
And in a small town, there are no other alternatives. Either you go to this group, or none at all.
So as much as I love my small town life… sometimes the people who go with it really suck.
For those trying to keep up with the latest progress/diagnosis/prognosis of Vista here’s a short (OK, not so short, but when is anything I ever say short?) update.
If you’re not interested in the whole mommy/kid/doctor/diagnosis type thing then move along, this is not the post you’re looking for.
Vista was born 4 weeks early and spent a week and a half under UV lights for jaundice, due to a ABO blood incompatibility between her and I. She also had an infection for which she was on IV antibiotics. Otherwise, she was a very healthy baby.
In The Beginning
We first started noticing issues when Vista was about 3 months old. She wasn’t as flexible as most babies (she couldn’t bring her feet up to her mouth to chew on, for example. Which, quite frankly, I was OK with, because really? Eeeewwww. Feet. Even if they are baby feet, which are all cute and everything, but still…chewing on your feet?). Then we noticed she couldn’t sit up like other babies, and she wasn’t babbling either.
Around this time she also became a colicky baby. If you’ve never had a colicky baby, count yourself lucky. I can remember telling my husband one day “I understand, now, how shaken baby syndrome happens. I don’t condone it, I would never do it, and it should never happen, but I understand now how a parent on the edge already could reach the breaking point so quickly when you’re with a child who cries 24/7″. There were a few times where I had to lay her, still crying, in her bed, and step outside for a few minutes to regain my sanity. But I digress… She was colicky, which was eventually diagnosed as reflux. This coupled with an eventually discovered milk allergy made for lots of fun the first year.
By a year old, though, we were starting to see more developmental delays. She still wasn’t crawling or even really rolling over much, so we managed, through our Public Health Services, to get a referral to the Early Intervention (EI) group. We now have our own EI child development specialist, physiotherapist, occupational therapist, and speech pathologist that work with Vista a couple times a month to keep her caught up on her milestones.
But we still felt there was something more going on. This was confirmed when she started having mild seizures. Her pediatrician sent to referrals to the neurology department at the local Children’s Hospital. They refused to see her both times. So we finally convinced her pediatrician to request an MRI, himself, after an EEG came back normal.
Even though we were expecting the MRI to show something that would explain the delays, nothing prepared us for the words “There was abnormal results on the MRI”. The next half hour passed by in a blur as we tried to take in and understand the flurry of medical terms that were being thrown at us.
“…absent septum pellucidum…”
“…thinning corpus callosum…”
Wait! Hold the boat! Did you just say my daughter is missing part of her brain?!?
I looked over to where Vista was sitting reading a book with Bil in the doctor’s office. She looks normal. How could this beautiful little girl be missing something in her brain. I couldn’t comprehend it.
We still don’t really know, at this point, what the ramifications of these issues are or will be. We’ve been referred to a neurologist (again) and hopefully will have more answers once we meet with him. The tricky thing about a missing septum pellucidum is it’s never the only issue and it doesn’t cause the issues you see in a child. Most cases of people where their septum pellucidum is missing, also have a malformed optic nerve that also causes blindness or other visual issues. But we’re not seeing that with Vista. So, at this point, we suspect that her delays, reflux, constipation, and seizures may be due to the thinned out corpus callosum. But all that’s just conjecture until we talk with the neurologist.
In the mean time, we’ve also consulted with a geneticist. They are running a bunch of tests to see if they can pinpoint the cause of the delays from a genetic syndrome point of view. So, they’re hoping to rule out Fragile X, Triple X, and other things like that. Or rule them in, as the case may be. At any rate, we won’t have results for a while…up to three months.
That’s OK. We’re really good at waiting these days. Vista’s almost two. We’ve spent almost two years fighting the system to prove that we’re not just neurotic parents and that there was something really wrong with our daughter. Three more months? Yeah, we can deal with that. At least, now, things are being done, and doctors are listening to us. And more importantly, we’re able to get Vista the help she needs to be as normal as possible.
Some things we’ve learned over the past two years:
- Parents know best. If you feel there’s something wrong with your child there usually is.
- The only person who’s going to advocate for your child is you
- Don’t be afraid to question the doctors and ask for clarification.
- If you’re not comfortable with the ‘wait and see’ approach the doctor is taking, say so. Ask for different tests, more tests. Quite often they won’t suggest it.
- Don’t back down. When you’re told you’re just a neurotic parent, that your child is fine, that you’re putting them through tests for nothing. If you truly believe something is wrong, pursue it.
The part that really scares me about this whole thing is, how many kids go undiagnosed? How many parents, when told they’re just hyper-vigilant, back down and just accept that. I suspect more than fight to have their child diagnosed. If we hadn’t fought, we would have probably never found out about her brain condition and we’d just have a child who was labeled as ‘slow’.
Makes you have a lot of faith in the medical system.