A Random Post

There are so many potential posts swirling around in my head lately. I want to capture them all, write about all of them, be eloquent and exciting and detailed about all of them – but I fear losing them. So I am going to make an attempt at dumping them all here – as short summaries – in one blog post. Hope it works for you. (Hope it works for me).

 

Summer Fun and Challenges

Summer is supposed to be fun. Care free, memorable, full of family time.

Care free is difficult when you have a medically fragile child and one who has developmental challenges like Kate. You never have your guard down, even when you seem to be in the most ‘relaxing’ of of ‘summer fun’ situations, e.g. at a friend’s cottage, at the park, swimming at the local pool. You are constantly watching, managing and worrying. And ‘constant’ in the key word here. There is never a down moment. There is no leisurely time by the pool, dock, lake – and there is no time when your aren’t planning ‘what’s next’, e.g. food, medications, feeds, energy management etc.

It is not a normal life and summer is not summer fun. We have good memories – we enjoy ourselves with friends and family (especially those who ‘get it’ and help with Kate), but it is not easy and sometimes we long for routine and for a break.

I feel a small amount of guilt as I reflect on our summer. A family holiday gone awry due to an episode of Kate’s SIFD, having to adjust things for Jack constantly and not spending as much time with him as I would have liked, feeling like this summer slipped away somehow.

 

Breaks

Child care costs and arm and a leg. Many parents off set this with camps in the summer. But what do you do when you 7 year old child can’t attend the ‘typical’ summer camp? What do you do when you are paying your specialized one to one caregiver 8-9 hours a day so that you can go to work and make money  – to keep your job and pay your caregiver?

In our case, we do just that – we work to keep our wonderful caregiver and we try and normalize Kate’s life an find her opportunities to attend day camps – like other kids.

Kate has had two amazing camp experiences this year. And we are so happy for her to have had the opportunity that other kids have had. She attended a Deaf camp this year for the second time. Yes, her caregiver attended with her, and yes she got tired and needed that extra support. But she loved it and had such an amazing time with other children who are Deaf and hard of hearing from the community. It is a small community, but the children embrace one another and there was so much support for Kate. A wonderful time for her.

And then she attended gymnastics camp for two weeks, and yes it had ups and downs for a child who has an energy disrupting disease that might not be able to keep up with the ‘regular’ kids. But she was fully supported at OGC, and our experience there has been amazing. Kate has been a gymnast since before she could walk independently and there was a never a question from OGC about how she could participate. They simply asked what she needed and they made it happen. Kate went to camp 2 full weeks this summer – drop off and pick up – no mom involvement needed -and it was hard for her, but also fantastic. Fantastic. I will be forever grateful for the OGC team.

And then there the wonderful friends who ‘get it’ and offer to take Kate to the park, or for a swim, or take a turn being vigilant at a cottage, or chase her around the yard at a neighbourhood barbecue. And we take it in stride, but are grateful for the break. The break in vigilance, the break in the constant humming of watchfulness.

 

Ignoring CHEO

And I mean this in the most respectful way, but not having to engage with CHEO unless absolutely necessary has been great. Clinics slow down and don’t want to see us, and the demands are a little less. Kate was sick in July  and needed to be hospitalized (ugh), and she had weekly transfusions of her immunogloblulins which required us to be there for a few hours a week (ugh), and she needed bloodwork  a few times (ugh). But we did slow down on our interaction and visits a little and it was nice.

 

Episode

What would summer be without an episode her SIFD becoming acute??

Really, doesn’t everyone have their only 2 weeks of summer holidays interrupted by a visit to the emergency department and an acute hospitalization?

Eff.

Enough said.

 

Preparing for School

Such a love / hate relationship. Get us back in to routine. Now!

Dreading the constant to and fro of managing Kate’s symptoms and her health. And this year, starting at a new school and worrying about what that will look like and how that will be managed and what the issues might be that will come up (cause you know they will  and no – they are not the ‘typical’ kid issues).

I have been working since late July to get school transportation sorted. It hasn’t sorted yet and school starts in less than 36 hours. Sigh. My special needs community is probably right, this won’t be sorted out for a a week or so and I will likely be driving Kate myself.

We have a new teaching team, therapy team, specialized services team, principle etc. How to direct and manage all of them and be sure Kate has the best experience she can.

Point of reference: I send Jack to school with a solid lunch and back pack stocked with school supplies and end my worries there.

I know the daily phone calls from school are about to begin and I am ready. Not dreading, just resigned that this is the price to pay to have Kate attend school. And I have my moments – many of them – when I wonder if sending her to school is ‘worth it’, then I remind myself of the break and the need for her to at least be around other kids that are somewhat close in age to her.

 

And so this was summer.

Sunny days watching Kate ‘swim’ and slide down the slide at the local pool.

Watching her ‘tube’ behind a boat for the first time.

Marvelling at her being the first into the lake – every time.

Listening to her giggles as we exhaustingly give into her endless requests to go the park in the late evening.

Watching her skin tan and bronze (with sunscreen) and leave a tell tale tan line where her NG tube changes sides each month.

Watching her suffer through a ‘cottage’ weekend with an episode and finally deciding the cottage week of fun was not to be this year.

Letting Jack tow Kate behind him in her own kayak – and feeling a warm glow knowing he has his sister’s back.

Checking on Kate in the late evening before we go to bed and listening to the contented snoring of a child who has had busy day.

Knowing she has had a solid summer of happiness and realizing that this is a gift. Her 7th summer with us.

 

Happy summer 2014 everyone!

 

Julie

 

 

 

 

Leave a Reply