A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Monday, September 7, 2015

Life is a Beach

And not in a good way. In fact, you can maybe change out the ‘ea’ for a couple of other letters.

 Life is usually good. Playing on the beach, splashing in the water. But this past week it feels like I’ve been dragged into the ocean and I just have wave after wave trying to pull me down. One of 2 things, ok I can handle and still stay on my feet, but I just feel that it is one thing after another this week and I’m stressing.

This week we found out we got funding from Easter Seals for Nick’s porch lift. That is fantastic! $3000 we have towards that. But the difficulty is that now we have to come up with the other $2000 for the porchlift (OK we can do that) and the estimated $5 000-10 000 for the construction. The whole reason it has been such a long journey is the cost of the construction. I think paying $10 000 to put a door into the garage and a deck is insane. We have a second quote which is less, but have had problems getting ahold of the guy, which isn’t good.

OK that is one thing that has been weighing on my mind. How do we get the money to pay for this. We talked about March of Dimes (the home grant that is a one-time use, up to $15 000) and other funding options, but I make too much money (as a RN working full time, no overtime) and we are over a lot of the limits. It doesn’t help that they base funding on what we made last year when Kyle worked all year, but currently he has been laid off since February.

We also had Nick’s PT/OT assessment. It went well and I think the new system of PT/OT will work well. Hopefully in the winter we will look at doing some intensive therapy to get Nick using the crutches for school. But we talked about a home program and what we should be doing at home.
Nick has been using his standing frame this summer and has been doing well in it. They asked about tummy time. This is the first I’ve heard of tummy time to stretch out his hips. So we should be doing that daily. Nick also just got his new computer, so we need to do more work with him on that. We talked about programs Nick can do (karate, yoga, swimming, sledge hockey, basketball) in the community.

All of this is good, but then you think about all of the time. 1 hour standing, 1 hour lying, 1 hour on the potty, another 1 hour for cathing (4x a day for about 15 mintues). That is 4 hours every day! There is also computer time, there will be homework time, learning to read time, extracurricular time. Eating time, socializing time, playing time, school time, fun time and sleeping. So this is another wave that has been on my mind.



We had Nick’s school visit this week. Check out the new school, get his new EAs and teachers ready for him, get him used to the bigger school, bigger class size and all of the new people. Increase his independence because he won’t be supported as much. Hope and worry that socially he does well as a kid that is physically different from everyone else, as well as being shy. The first day of school, this first day of school has been a source of stress for a long, long time.
The visit went well, everyone is very supportive and we tried organizing as much as we could. Then we found out that Nick is in a split-class. And he is only 1 of maybe 5 kids in grade 1 and everyone else is grade 2. This was one of the things I worried about and didn’t want, because he is already a November baby he could be with kids that are almost 2 years older than him. We didn’t make a big deal about it, and will see how he does. But it is another thing I’ve been thinking and worrying about.

Last week (Monday or Tuesday) I contacted the bus company because we hadn’t heard about pick up or drop off yet… you know a week before school starts. Wednesday the bus driver called, but he had the wrong address for pick up. Not actually wrong, he had our home address and it is supposed to be our daycare address, which is one street over. He couldn’t change anything and said that school had to change it. OK, no big deal, went into the school on Thursday and they changed it, they said it may take 3 days to change. I had an automated number to call so I would know if it changed before Tuesday. Again, no big deal the wrong location is our house, we will just stay home for the pick up. Friday afternoon I get a call from the school. Because we changed the location the bus is now cancelled and won’t be picking him up at all. At the time I got called I was trying to sleep for my night shift, just said ok, I am off anyways and I’ll just drive him in for his first day of school. I asked about drop-off, but she didn’t know.

After I got off the phone with the school I started thinking (yes another wave of stress to knock me down). How could they just cancel the bus, like Nick doesn’t need to actually go to school the first day? How am I going to drive him? The parking lot will be packed, there is one accessible spot, the lot will be filled with school buses. I would have to park down the block. At least I am off work and can run around with Nick. Of course it got me more thinking. Why did they just cancel the bus! They put in the wrong address, they waited until the last minute to notify us. All we want is the bus to pick him up one street over! The bus actually needs to drive on that street to come to our house. We didn’t want it cancelled! He still needs to go to school, he is still entitled to go to school on a bus. Of course I also have stress about the ‘short bus’ mentality and stigma related to that, which I have been working very hard on.

With all of this I needed something to do (you know besides work 3 night shifts on a busy weekend, a hot and humid labour day, which is aptly named). So I updated my pamphlets for school and made a beautiful one (if I do say so myself) to go home with students the first day of school. The morning after my first shift, 12 hours without a break, I went to Walmart and picked up everything I needed for printing, including 2 full ink cartridges. I printed a couple copies and brought them into work Saturday night to show everyone. Sunday morning I started printing everything. After about 7 pamphlets (which is really about 15 pages) the ink ran out (I had printed about 50 pages with the new ink in total).

The brand new ink, that I just bought, that I just bought the last one in the store and no other local stores had it. I could (at 1030 am after another busy 12 hour shift) go to another store about 20 minutes away, pay another $40 and hope there was ink. Or I could get up early to go to the same store before they close at 6pm. Everything was closed on Monday. Kyle is up at the cottage with the kids (I have been home alone all weekend, not even any dogs) so I didn’t think of asking him to go. And Walmart is dangerous for us at the cottage…

I had 7 pamphlets that were usable, and 2 for teachers. There are about 30 kids in the class. The whole point of working on it all day Friday was to have it done for the first day of school.
That was it. I was done. I had a bit of a breakdown, posted on facebook and then went to bed. Kyle immediately responded that he would go and get the ink, so I actually slept instead of continuing to stress while trying to sleep and then stress that I wasn’t sleeping…


My night shifts are done for now, they were busy (they always are). I still have all of these things on my mind. I like things to be perfect and organized and have a plan. I like to know what is happening, and I want everything to go well. I am thankful that I have had a bunch of support on facebook, and reminding me that it works out in the end and that some amount of chaos is normal.

It just seemed that this week a whole bunch of little waves just knocked me down.


That’s ok, I’m a good swimmer!

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