Let’s talk about my absolute biggest pet peeve – people in disabled parking spots without disabled placards!  Maybe I have anger management issues but this seriously makes me want to scream.

Today, I was out with my girls running errands. We parked one spot over from the disabled parking. I do have a placard but typically don’t use it unless it’s icy or we have Ali’s wheelchair with us.  I like to make sure that people who need them more than we do have access to them. I might use one on a really crowded day because it’s very hard for Ali to walk outside but today there was lots of available parking. As I grabbed a cart, I noticed that there was a blue Dodge Dart in the very well marked disabled parking stall that did not have a placard. I see that all the time. Typically it’s someone carrying a heavy bag of dog food or someone who runs in and out within about 2 minutes – neither of which make it okay. I went in to the store, we used the washroom, did our shopping and came back out and the car was still there. As I was loading up my kids, a lady in about 4 inch heels and dress so tight that I’m surprised it didn’t explode sauntered up to the Dart and bent right over and licked her finger and sighed as she rubbed a little bit of dirt off of it. Maybe she thought her car was pretty spiffy but I have trouble getting excited over a Dart! She sort of stood back and examined it (I know the look because I look at my Pilot that way) and got in and checked her makeup and as I was pulling out, she and her friend were still getting themselves organized to leave. She was obviously in no hurry to vacate that spot that they had no right to be in. Now, I am the first to say that disabilities are not always visible but if you do not have a valid placard, you should not be in those parking spots. I would love to give her the benefit of the doubt both in regard to her fashion sense and her parking job and assume that she didn’t know that it was a disabled spot but it’s very obvious that it is. I think she parked there to avoid door dings on her car and that pisses me off.

I have a feeling that my many, many friends who do have a right to those parking spots would gladly take all the door dings in the world to give up the need for that placard. I would and I’m pretty anal about my beloved SUV. This woman’s life is obviously way to easy if she figures she can just help herself to something that is meant to make life easier for someone for whom a simple outing can be very difficult. I only wish my life could be that simple. I have seen families who have children with severe disabilities struggle into and out of the grocery store with their children because ALL of the disabled parking spots were taken by people without placards! That is NOT okay people! If you have one display it. If you don’t then leave the spots for someone who does. I don’t care what the circumstances are, there is absolutely no excuse for that. It’s lazy and entitled and it stinks! You know what, maybe she missed the sign. But I see it all time and all these people, in this small town, with a limited number of parking spots are not missing the signs!

So I’m going to put my soapbox away now and get on with my day. But please, next time you think to yourself, “I’ll just park here. It’ll just be a minute”, don’t!  What if three other people also think that way and use all the parking stalls?  You could be making it so that a senior citizen can’t get their groceries, a disabled parent might not be able to get to their medication or a disabled child might not be able to get into a restaurant for a well deserved outing.  It’s not a perk, it’s a necessity.  It’s illegal to park in these parking spots without a placard and it carries a huge fine.  These spots are there for a reason, to make life a little simpler for someone who’s life is probably very challenging. If you don’t need them, don’t park in them. It’s really not that difficult of a concept.

With our summer vacation behind us, I find myself thinking about Ali starting kindergarten.  We’ve done a lot of planning and preparing for this.  She’s worked hard to be ready and I know that she is.  I’m not so sure about myself.

For almost 8 years, I’ve been a full time mom.  Madi has been in school for a while and she’s loving it!  It was a difficult transition for Madi with lots of tears for the first week but we sorted through it and now, I think she’s at her happiest at school.  Ali’s transition to full time school has been a little more gradual but that transition is coming to an end this year.  She’s gone from being a child that needed 24 hour care from me to a child that’s ready for kindergarten!  While I’m incredibly proud at the progress that she’s made, it’s hard to imagine that when September comes, she’ll be out of my care for the entire day.  I’m honestly not sure what I’m going to do without her!  We are truly codependent.  I’m going to have to find something else to do with my time, something more about me and less about her.  My apprehension is not just about Ali and her needs, it’s partly about me and my identity.  I gave up my career to be a mom and to stay at home with my kids and I got a lot more than I bargained for and now, it’s all changing again and I need to readjust.  I’m probably not going back to my career because I still want to be available for them but I do need to find new opportunities now.  There are so many possibilities and I have no idea where to start.

I remember when Ali first started at her special needs nursery school.  I was terrified and I think the teachers probably were too.  It was the first break that I’d had in two and a half years and I was convinced that we were the only people who could look after her.  It ended up being an amazing experience.  Ali created amazing bonds with the people there and I knew that she was safe.  I never doubted for a second that I could leave her with them and know that she’d be okay.  It was a great lesson for me and I need to remember it now.

As with any big transition, I feel like I need to micromanage.  I’m not a mom that deals well with uncertainty.  Although the school has done their part in informing me of how Ali’s day will go, I still have so many questions and it’s driving me nuts!  Short of following Ali around for the day, which I certainly won’t be doing, I’m not sure that I’ll ever be satisfied.  Last night I tried to engage my husband in a conversation about how the teachers would get Ali’s indoor shoes from the kindergarten to her afternoon language program and back again. Yep, uncertainty is not my strong point.  Aside from the important issues like the transfer of shoes from locker to locker, I also worry about Ali’s health and feeding concerns and feel really pressured to get them in order before school starts and another thing I don’t necessarily deal well with is deadlines.

Ali is an amazing, engaging and social little girl.  I have no doubt that she’ll make friends in kindergarten but I worry that the other children won’t be able to understand when she speaks and that they may eventually give up trying to talk to her.  She has trouble making her wants and needs known to strangers, I worry about her not getting what she needs simply because she can’t say it.  I think that would be incredibly isolating.  I also worry that she won’t be able to keep up physically and that she’ll get too tired and stop trying to interact.  It’s very comforting to know that she already has several wonderful little friends from previous years that she adores so hopefully, she sees lots of familiar faces and kids that she already has a bond with.  A big worry of mine is that I really believe that it’s easier to be different when everyone is young.  Right now, the kids are very excepting of Ali because she’s small and cute but what happens when she’s not anymore? What happens when some of the kids decide to be mean?  Madi came home from school in first grade crying one day because two little boys were making fun of Ali, who wasn’t even a student at the school, that broke my heart. I still think of it, especially when we’re going into this transition for Ali.

I’m not going to let my worries ruin this for Ali.  I’m going to trust the school to make the right choices, to keep her safe and happy and I’m going to drop her off on her first day with a smile on my face and tell her how proud I am of her and how far she’s come. Then, I’ll probably go sit in my car and cry, then peek in the school windows (just being honest here) and then I guess I’ll go find a job (anyone want to hire me? I’m very well educated!). She’s growing up and just between us, it’s harder than I thought it would be! ; )

If you are friends with me on Facebook or you read Ali’s medical blog (Carepage) you have probably asked yourself why I post the fundraising link for The Costello Syndrome Family Network so often in the year before a Costello Syndrome Conference.  I know that to some of you it’s probably annoying (I’ve actually been told that it’s annoying).  I post it (often) because I truly believe with all of my heart that the CSFN conferences change my daughter’s life.  I believe that without the support of the CSFN, Ali would be a very different child and I believe that our family as a whole would be in a very different place.  Imagine, having a rare syndrome as Ali does.  She is one of only about 5 or 6 people in Alberta with Costello Syndrome.  She regularly confuses her doctors and she has medical issues that don’t follow regular patterns and that can’t be fixed by regular means.   We often have doctors asking us for help, they need us to help them find a way to help Ali because there are so many things about Costello Syndrome that just don’t makes sense.  There are very few people in the world knowledgeable enough about the syndrome to help us.  As much as we try to treat her like she’s “just a kid”, we can’t go blindly through her childhood, we need guidance and support and we need to be in contact with medical experts and other families like ours.  The CSFN provides us with these very valuable connections.  They provide us with one on one time with medical experts that do research about Costello Syndrome and who have seen many, many patients with the syndrome.  They provide us with the opportunity to attend medical lectures and be updated on research and most importantly they give Ali the opportunity to look around a room and see 50 other people with Costello Syndrome.  She plays with them and hugs them and she knows that she’s not alone.  We all leave those conferences knowing that there is a whole community of families just like us.  The CSFN allows us to make life long connections that will help Ali in more ways than I can express.   Costello Syndrome is extremely rare.  There is only an estimated 300 people in the world with CS which doesn’t really give the CSFN a huge base for fundraising.  When you think of the huge cost of an international conference, and what the CSFN provides to families at these conferences, it’s pretty incredible that they manage to give families this opportunity every second year.  These conferences are paid for entirely by families like ours.  There are no major sponsors and no huge organizations funding our conferences.  The doctors and speakers pay their own way, the board members all commit their time for free and the families fundraise so that the CSFN can keep bringing us all together.  Without our fundraising efforts and the support of everyone who loves someone with CS, there would be no conferences and to us that would be extremely disappointing.   I am proud to say that this year, we raised over $5000 USD for the Costello Syndrome Family Network.   We are truly honoured and grateful that so many of you gave so much to support our daughter.   We can’t possibly thank you enough but we can tell you that your generosity and support makes Ali’s life better and for that we are extremely grateful.

This years conference was in Seattle.  What an incredible city!  Tuesday was the first evening of the conference and it was an opportunity for the families and medical researchers to get together and socialize a bit.  Everyone said hello and enjoyed some treats!

On Wednesday morning we were up bright and early for Ali to meet the medical experts and researchers.  She got to meet several doctors who are involved in research and we got to have a chat with a few others experts who were available to answer our questions.  We got lots of great information but there were a few highlights.  We spoke to an endocrinologist and he answered several questions for us about her ongoing issues with hypoglycemia and growth hormone deficiency which was a big relief.  We saw an ophthalmologist who answered some questions about visual adaptations which was really helpful with Ali’s kindergarten transition coming up in September.  The cardiologist gave us a heads up about the fact that just because her heart issues appear to have resolved doesn’t mean that we can let our guard down (disappointing but helpful) and the orthopedic surgeon provided a whole list of things that we should look into in the future.  Everyone seemed thrilled with Ali’s progress and she was really excited to share with everyone that her G-tube is gone and to show off her new words!

Thursday was family fun day.  We filled out some medical surveys and participated in a craft fair.  Later, my Dad and Jason got to have a beer with the men and then I went for a glass of wine with the other Moms.

On Friday and Saturday, we had medical lectures.  We learned a lot.  Basically, we got a two day overview of Costello Syndrome.  Topics included cancer risks, orthopedic issues, growth hormone, skin, eyes, cardiology, what to expect in adulthood, an update on research and brain abnormalities and alternative therapies.  We finished with an opportunity to ask the doctors questions in an open forum.

On Saturday night, all the families, doctors and researchers got together for a big dinner and dance.  It was amazing to see all the people with Costello Syndrome, grandparents, aunts, uncles, moms, dads and siblings dancing alongside the people who are doing research and working so hard to help our families.  It really reinforces that the CSFN is a community and we very much all work together to improve the lives of these amazing people with Costello Syndrome.   I loved seeing the bonds between the older individuals with CS and how excited they are to see each other.  Even now, I can see those types of bonds starting to form with my girls and some of the other children.  That’s the most important part of these conferences, the sense of belonging that my children will grow up with amongst this amazing group of strong families.   It was awesome to watch Ali interact with the other children with CS.  The look on her face when she looked around and realized that just like her, they all had Costello Syndrome was incredible.  It’s just a syndrome, it doesn’t define her but it’s a huge part of her.  That’s not a bad thing, it’s just how it is and I love that we all get these opportunities to get to know all these amazing people and to see the huge amount of potential that our little girl has.  Two years from now, we’ll do it all over again in Orlando and we can’t wait!

Yesterday morning I got up bright and early to prepare for a big morning of Ali things!  I got Madi off to school and had Ali dressed, fed and medicated by 8:30 so that I could make a phone call about her new wheelchair before heading out for the morning.  After making my phone call, I checked Ali’s blood sugar, gave her a snack and we headed to a therapy session at the gymnastics club.  From there, we went to the drug store to pick up Ali’s prescriptions and then it was time for another snack.  Ali has hypoglycemia and at the request of her Endocrinologist, she eats a high protein/high fat snack every ninty minutes to keep her sugars in a normal range.  I checked her sugars in the car, put on a band aid and headed into McDonald’s, Greek yogurt in hand to get a juice and a coffee and feed Ali.  Ali loves going to McDonald’s!  She just adores sitting and watching what’s going on around her.  It’s rather distracting!  So, I’m happy to let her sit and look while I shovel the yogurt in to her mouth.  After only an hour and a half, she’s never hungry, despite the state of her blood sugar so she rarely self feeds anymore.  We’re sitting and she’s looking around smiling and I’m drinking coffee and happily shovelling the food into her mouth and life is great.  Then suddenly I have a lady standing next to me telling me that she’s too old for me to feed her and that if I don’t do it, eventually she’ll get hungry and learn to feed herself.  Well, thanks for the advice lady, I never thought of that!  What’s funny, is that I’m sure this lady thought she was probably about 2 when she’s actually 5!  Now in the grand scheme of things, that’s not really that horrible of a thing to say and it actually sounds like a reasonable plan if you’re not Ali’s mom, but what I don’t understand is why people give unsolicited advice to strangers in McDonald’s?  Maybe I’m too sensitive?  Don’t answer that because I know I am.  But I don’t understand how people can look at other parents, who they’ve never met and feel like they need to give unsolicited advice?  Support, kind words, a sympathetic glance, sure!  But I think parenting advice is a little much.   I struggle every day with Ali’s feeding issues.  We struggle with balance.  Allowing her to feel hungry to help with self-feeding versus the need to eat often to avoid low blood sugar.  Hypoglycemia vs excess weight gain that can cause worsening heart issues and the social implications of getting chubby in order to keep her sugars up.  Our feeding team tells us never to push food yet our endocrine team tells us that she has to eat every hour and a half!  It’s very complicated. Maybe I should have asked this helpful lady how exactly one successfully feeds a high fat diet to a child that needs to eat often yet is never hungry and has an affinity for vomiting while keeping them skinny due to heart issues when they don’t actually grow upward much?????  Something tells me, she wouldn’t have had the answer.  No one does.   I have to document blood sugars for endocrine so I am actually held accountable for my actions when it comes to feeding my child.  There are multiple therapists that monitor her progress on self-feeding and chewing, which also in a way holds me accountable.  That’s makes it more stressful.  Now, obviously I can’t expect a stranger in McDonald’s to know all of this which is why I wonder how people feel like they are in the position to give such advice?

I’m not actually that upset by this.  I felt like writing a blog post anyways and I’ve had much more cringe worthy conversations.  It’s always a little tricky when someone asks how old she is (insert awkward pause) or inquires if we think she’ll get hair before she’s two (she’s 5),  I’ve been asked if she changed my stance on prenatal testing (no she didn’t), I’ve been used as an example of why you shouldn’t smoke when you’re pregnant (I’ve never smoked anything) and I’ve had a conversation about how lucky I am that she’ll never become an independent adult (because that’s what we all want for our kids? She’s life limited, one day she will be gone but no, she won’t be independent).  So I’m well versed in awkward conversations which is why I simply thanked the lady for the advice and shovelled another spoonful of food into Ali’s mouth while smiling at her.  Then I went in the car and cried (no biggie – remember I said I’m too sensitive).  It’s all good now.  It’s another reminder to me to try really hard not to judge what I see because I don’t know everyone’s story.  It’s hard sometimes to remember not to judge so a reminder’s always good.