Inchstones and milestones

It’s been nearly a year since my last post. It’s not that there haven’t been things to say. They just didn’t feel like things that should be said to other people (aside from my therapist, husband and a select few who I know won’t judge me and think I am a horrendous person).

I also felt like I shouldn’t be writing because I didn’t have things figured out yet. But I recently stumbled upon some early blogs that my mentor wrote before she became the super inspiring writer person she is today, and I realized that writing is partly how I’ll figure it all out. Besides, this is a private blog so it’s a safe space. And as much as a lot of the battle  in the last year has been an uphill fight, it’s all part of the journey, and I may want to remember it down the line.

And lately I find myself in a strange mental/emotional state. I am stuck between extremes. On one hand I am struggling with some big questions, dilemmas and implications. But at the same time – for the first time since Aidy was diagnosed – I am finding myself appreciating things and finding things to be grateful for without really trying to. At times I am also seeing Aidy just as a child, as opposed to a child with CP which has been my filter until now. As such, it feels a bit safer to start chronicling things again.

So where are we at this juncture when I’ve decided to pick up the pen again?

Honestly, we are still all reeling from Aidy’s epilepsy diagnosis. His seizure was two months ago. It was a massive rock that was thrown into the relatively calm waters of our family, and the ripples just keep coming. My anxiety levels have gone through the roof so I’m seeing a new psychologist to try and get a handle on that. In the meantime, my doctor prescribed some new medication which is working wonders on my ability to cope at the moment. Cam is struggling a bit emotionally, but he’s seeing an educational psychologist to help him process all of his feelings, and we are really starting to see positive results from that. Col is also surfing the waves, but that’s his story to tell so I’ll leave it there.

But despite this emotional maelstrom, Aiden is doing exceptionally well. He has responded amazingly to the epilepsy medication he is on, and it hasn’t had any negative effects on him. I am so grateful for this because I know that sometimes it can knock people really badly and they spend their days in a zonked-out daze. It can also be really hard to find a medication that agrees with a person, but the first one we tried has been a success, so I guess we lucked out a bit there. (All that said, he hasn’t been sick or had another fever since June, so there is still a part of me holding back my jubilation until that first real test of the medication’s effectiveness is behind us.)

As for his physical abilities, I feel like we are really starting to see the benefit of all the therapy and work we’ve put in during the last two years. He is using his left hand so nicely, and even choosing to use it over his right at times. His balance is really coming along, and once or twice he has taken a few wobbly solo steps (but only during physio when he’s worked up to it during the session). He loves jungle gyms and is currently trying to imitate Cam who is climbing up every available railing/burglar bar/jungle gym while he plays out his Spider-Man fantasies (this comes with its fair share of heart-stopping moments but I’m trying to find the balance between letting Aidy test his skills and being the neurotic helicopter mom).

In the last month we’ve gotten new AFOs made, and last week he got a gait trainer (which we call the Batmobile). I can’t believe how fast he can move in it! Today I took him out with it in public for the first time. We went to the mall, walked to Dischem, did our shopping, and walked back. I did have to bribe him at times to keep going (I think it’s really tiring for him), but he did it. On the return trip we even had a ‘race’, and his delight did my heart so much good. I was so proud! (And also, so not caring what other people thought. We got a few odd looks, but most people were really encouraging, and smiled and gave us space to get by.) I think we can chalk up this first foray as a positive one.

I read through my last post which was 10 months ago when we got the K-walker. Strangely, at this present time many of those issues are back at the forefront again, but because I’ve been mulling over them for so long in the back of my mind, they don’t stress me out so much now. We are trying to declutter a bit, and are getting quotes to build a ramp at the front door and redo our very uneven paving. But I’m not in a state of panic about it. It will get done, and in the meantime we’ll work around the constraints we have.

A while back I read this list of quotes by parents of special needs kids, and one of them has really stuck with me:

It’s a lot harder than it looks. It infiltrates every crevice of your life and affects every minute of every hour of every day. It’s right there when you wake up in the morning and doesn’t stop challenging you until bedtime (and doesn’t stop even then).” — Hilah Swidler Marca

That is very much where I find myself at the moment. It is blinking difficult. But another of the quotes was this:

“You have no idea how much potential you both have to exceed your expectations.” — Becky Hirsh Carroll

I’m holding onto that. And finding a sense of humor fast (thank you Bill Watterson).

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6 thoughts on “

  1. Luce I always felt if only they gave parents a textbook. There is no training for parenthood and especially no training for parents of special needs children. The amount of patience understanding and tolerance knows no end. I am proud of you and Col as well as Cam and Aidy. I am so lucky to have lovely kids and grandchildren. Being a grandmother is a privilege and getting to spend time with Aidy and Cam is so precious. I treasure each moment. Well done. One day at a time!

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  2. Luce, you make me incredibly proud. Even when I think I have soon you quite a bit and have and idea what’s big at the moment, I read this and realise I have no idea. There’s no off button or down time. But you can do this my friend! Aidy got the best deal when God chose your family for him!

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