Tuesday, January 14, 2014

FOUR

Tomorrow, my little boy turns four years old.

Birthdays change when you are a mother. Birthdays become Birth Days. The anniversary brings vivid memories, sharp emotions, and overwhelming adoration for that baby that arrived. Birth Days really change a woman.


Two things have really consumed my thoughts leading up to this birthday. The first happened innocently: Rachel was doing the typical, "How old will I be when Cordelia is 15? ... How old will I be when Kingsley is 8? ... How old will I be..." And doing a quick math riddle in my head made me announce that next month Rachel would be exactly twice Kingsley's age. Pretty cool! Except then I started thinking about everything that happened in Rachel's first four years vs what happened in Kingsley's first four years. Namely: two more children vs no more children.

Then, my blogger friend Mary Evelyn wrote this beautiful piece on having another child after having a child with SB and some of her words felt like a punch in the stomach.


We had always hemmed and hawed about having four children. I have 6 stocking hooks that I bought when Cordelia was a baby, because we just didn't know. I joked about stopping at three, but if I'm being honest, I did anticipate caving to Jeff and going for four.

Four.

When I was pregnant with Kingsley, after we knew, when life was torn into shreds and I was flailing for anything to ground me, I swore that he was going to be the last. I couldn't go through that again. It wasn't anything to do with him or his diagnosis, it was the pregnancy and the feelings of total helplessness, hopelessness. I had never been so sad or so scared in my entire life.

When he approached the age that the girls were when I got the baby bug, I had other things on my mind. My son had just had his fourth surgery. We were just coming to terms with the fact that he was not going to walk and all of the implications of that reality. We were busy. My mind was on other things. As Dumbledore would say, "we had enough responsibility to be going on with."


And now time has passed. As Jeff likes to remind me that ship has sailed. The fourth baby has never happened. The fourth baby will never happen.

Sometimes, I am a little bit haunted by the thought Mary Evelyn had: Some decisions can only be made from a place of love-- not from a place of fear. Did I make my choice from a place of love or from a place of fear? 

I honestly don't know. 



When you have your first girl, people immediately ask when you will be trying for a boy.

When you have your second girl, people immediately ask when you will be trying for a boy.

When you have your third child and it's a boy, people ask if you're done. 

If that boy has a disability, no one asks, they just assume you're done. You're off the hook. 

If he had been my first child, I would have to be brave. I could not stop there, I would have to have more babies. My arms would not have been full enough with just one child. 


I don't know what the answer is. What I do know is that tomorrow, my little boy turns four years old. He is my favourite boy. He is my only boy.


Monday, January 13, 2014

It's A Big Deal

A couple of months ago I was out at Target with Kingsley and being unfamiliar with the store, we wound up in the underwear aisle. Kingsley, naturally, started screaming and cheering the fact that there was Thomas the Train... underwear. My heart squeezed. I turned him quickly and got out of that aisle. Fast.

Underwear is like the Holy Grail in our world. Social continence - the ability to stay clean all day long, though with non-traditional methods - is a huge quest. The very very bottom of the spinal cord is the part that controls continence, so nearly everyone living with SB has to work to achieve social continence in some form or another.

I have probably said far too much about our quest for social continence ;) It has been a battle for about a year and a half now.  I have been googling and googling and emailing and messaging and reading and consulting and trying and trying and trying again.

And then this weekend, Kingsley wore underwear all day. And all day today.

Underwear. 

All. Day. 

Kingsley. 

Do you know how long I've waited for this day? It was pretty darn exciting. 

I kind of feel a teenie bit like we are cheating on the underwear thing. While our #2 issues have been completely, totally resolved (ALLELUIA!!!), the brand new #1 issue is still there. I can't figure it out, but as the timing was exactly when we figured out #2, it must be related. So, anyway, to address that business, I got Kinger what I call men's maxi pads. They're Gentlemen's Incontinence Pads, but let's be real - they're blue and shaped like a pear instead of an infinity loop. Whatever you want to call them, they are significantly cheaper than diapers. Although, it was more awkward buying them than when I stock up on KY (which is not a wink wink thing, it's for Kingsley and I do buy about 10 tubes at a time and get a lot of averted eyes by cashiers). 

So, with one of those guys hidden in Kinger's Toy Story unders justincase, he is good to go! 

He is still going to have to wear a diaper at night for the foreseeable future until we get that stuff worked out.  He doesn't actually care what he's wearing or even notice. I mean, other than the big underpants parties we had all weekend. ;) 


However.

As thrilling as this is, it is not a permanent fix. The things we are doing now, the way we do them, Kingsley cannot be independent. It is different for every person, there are so many relevant factors - gender, leg/body functioning, age, continence issues... but we have come to the conclusion that for Kingsley to be both continent and independent, surgery is his best (and likely only) option. This has not been an easy decision, despite my previous thoughts on it. The procedure(s) we are investigating are far more invasive and scary than we first thought. The recovery will be long and unpleasant. The risk of complications are real. But, we have yet to find someone who regrets having the procedure done. The only regret we have heard is the regret that it wasn't done sooner, when they were younger. I don't know when we will be having it done, but the decision has been made. The next chapter will begin. 

Monday, January 6, 2014

Winter on Wheels

Winter is here and it's been a brutal one. I know, I know, we live in Canada, the snow should not surprise me, but I kind of feel like we've had more than our fair share this year and now to add insult to injury, we are breaking records with the cold and wind. It's dreadful. It's only the start of January.


I think part of why this year seems worse than previous years is that it's the first time I've had to prepare all three kids for the horrid weather. Up until now, Kingsley has gone outside in the winter when I was interested in going outside... which is rare, hovering around 0C and has a nice, friendly snow. This year, he is in preschool and at preschool they go outside, no matter the weather. He plays outside at preschool, so now he thinks outside is all fun and snow is great. My glory days are over. This year, we play outside. Blech.

The weather shifted and snow hit the week Kingsley had his casts off, which was a godsend since you cannot fit snow pants or boots over casts and leg splints. I bought him Stonz boots again with a sherpa liner for warmth. They've been amazing. They fit amazingly over his AFO's and are very warm. I am going to cry when he outgrows these boots. There's nothing special about his snowsuit or any of his other gear, but putting it on is ridiculous. Dressing a typical child is not all that much fun. Dressing a child who needs endless layers to protect skin he cannot feel, who can barely sit up in that many layers, and who cannot push his foot into a boot is a downright gong show.


Remember the scene in A Christmas Story with Randy's snowsuit? This is my life right now. I work up a sweat, I'm exhausted. And many times Kingsley has laid on the floor when we're done, flailing around yelling about how he can't get up. Gong. Show.

Anyway, other thrilling escapades involve wheeling through snow, snow drifts, melting puddles of slush, puddles in general, salt and dirt. If you thought pushing a stroller through snowy sidewalks was bad, imagine not being able to tip that stroller back to get over the obstacles. Imagine lifting that dirty, snow covered stroller into your trunk over and over and over. Imagine pushing that dirt and snow covered stroller right on into your house.


I hate winter.

I'm trying very hard not to entertain the dismal thoughts running through my head about how Kingsley will cope with recess next year when he's in school full time. And when he's older and all the other kids are running through the snow. He'll be alright, right? He's not the first kid in a wheelchair in the winter.


If there's one good thing to come out of this, it's that Kingsley has started pushing his wheels with the hand rims instead of the actual wheel, to keep his hands clean.

Whine, whine, whiney, whine, whine. 

Sunday, January 5, 2014

Help Yourself

The other day, in the midst of holiday chaos, Kingsley dripped something on his shirt. This upset him. He wanted a new shirt. I was busy. 

Before that moment, the ridiculousness of such a scenario had never occurred to me. I (we all) had just fallen into that dreaded trap I swore I would never let happen: we were babying Kingsley. At that moment of frustration and annoyance, I looked at my nearly-four-year-old boy and said the most obvious thing...

"Go get it yourself." 

Despite the fact that we had built a completely accessible home, with an accessible bedroom, with an accessible closet that had low shelves and racks that he could access, I had just never before let him get his own shirt. How silly of me. 

That day, I showed him how to open his closet, pick a shirt, and take it off the hanger. Something my girls could do by the time they were two years old. 

Then came the next conundrum: he couldn't take off his shirt. Or put on the new one. I've been talking about teaching him how to do this, but always said I didn't know HOW. How do I teach a kid to put on a shirt while he's sitting on a chair? Enough wondering, we started working on it, figuring it out together. 

Today, Kingsley took off his PJ top and his undershirt all by himself. He was proud. I was proud. Another random milestone. 

My kid took off his own shirt. 

Who would've thought something so simple would give me so much joy? 

Next on our list is brushing his teeth. More excuses from me: he can't reach the sink. We brush his teeth while he's having other things done. It's another thing I have to stop and do everyday, but it will be worth it. And, really, it's past time for this stuff. 

So, I put him in his wheelchair, put a cup of water and his brush and paste on the counter and let him go. He dips his brush, opens the (Thomas, fluoride-free) toothpaste, puts some on the brush, then closes it. We each take a turn brushing, then he rinses the brush in the cup, lines everything up and carries on with whatever we're doing. He loves it. 

He's also able to be more independent in the bath, now that they aren't power-baths, trying to get him clean in the 30 seconds before he poops ;) We have time to let him wash his own body, help wash his hair... Basic stuff. Important stuff. 

Kingsley is turning four soon. Very soon. Time to let him grow up. 


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