Showing posts with label world events. Show all posts
Showing posts with label world events. Show all posts

Friday, January 11, 2013

A Word About Emily...

This month Parents Magazine decided to put an adorable little 3.5 year old girl on their cover. This is not surprising or particularly newsworthy, except that the little girl has SB and she's standing there wearing AFO's and holding onto her gold walker. I'm sure this is not news to most of you ;) but I will force it down your throat a little more, because it's super awesome.

Emily is on the cover because she made a great cover model. There is no article about special needs or SB or anything relating to that aspect of Emily's life. She's featured on a page showing how to make cute Valentine's cards.

It's amazing. It's such a little thing, but it has touched so many of us.

Kingsley doesn't see a lot of kids on wheels. We know two boys, both a bit older than him, that use walkers, but the vast majority of people he sees on wheels are elderly or adults in power chairs. To see a little girl his age, wearing the same kind of braces he wears, using a walker on a magazine like any other kid... it's awesome. It's normalizing.

I was out getting groceries tonight and I wandered down the book/card/magazine aisle looking for things for Kingsley's birthday party when I remembered the magazine. I zipped down the aisle and there it was! I may have shoved a bunch of other magazines out of the way so nothing was overlapping with it. They should thank me, really. It'll sell out now. ;) At check out I was grinning ear to ear. I had to stop myself from accosting the check out woman with 101 reasons why it was the Best Magazine Cover Ever.


I showed the girls the cover when I got home. Cordelia smiled and then said she wanted to eat her necklace. Rachel said it was a pretty necklace, then paused. She looked at me with a little smile, looked back at the picture, looked at me... "She has a walker-thing." I confirmed that yes, she did have a walker. I pointed out that she also had the same orthotics that Kingsley wears. She said: "Ooooh... Her skirt is like a fairy skirt." Cordelia came back to peer over Rachel's shoulder at the cover again. I'm not sure if she was looking at the walker, the AFO's, or the skirt, but she nodded and that was the end of it. AFO's and wheels are everyday things for my family to see. Thanks to magazines like Parents, they can be normal for all families to see.

Monday, March 19, 2012

It's Not That Bad

I think I have written and rewritten this post a half dozen times in the last few months. Things keep popping up in the media that make me feel like I have to speak up but the words aren't coming out right. There is far too much emotion attached to this one.

Life is random. The mantra we are fed as children gets repeated endlessly: life is not fair. Indeed it is not, nor is motherhood. There is no fairness in some women's ability to conceive children while others cannot. The sweet, angelic babies are not doled out to the single women with no support system, nor are the high needs colicky babies reserved for the most patient new moms with eager grandparents near by and a supportive partner. There is often no rhyme or reason to children who do not get to live long. Babies with disabilities or diseases are not given only to parents who are strong and who can handle it. We did not ask for it. We did not choose it.  No one hands us a list when we are deciding to have children so that we can run down the options and check off what we want. Blond hair - check! Blue eyes - check! Athletic build - check! Social personality - check!



I am not a supermom.

I didn't choose for Kingsley to have spina bifida. If given the choice, I would have politely declined that option, would not have checked that box. I wouldn't have checked the autism box either. Or the one with the third chromosome. Or any of the boxes that would lead me to being a 'special needs mom'.

I did choose to have a baby though. I chose him. I chose him and whatever he was coming with, I chose to take it. I don't mean that I made this choice when we 'found out', I made this choice the day I decided we were ready for number three.

It's not fair that I did everything right and this still happened. It's not fair that some women do everything wrong and it doesn't happen. It's not fair when us mothers are told things about our children that we did not expect, did not want to hear, and yes, even feared hearing above all else. It's not fair. But as a mother, we know that life is not fair. Things happen, but we now must accept that it's not just about us anymore. Deal with it.  No matter what we had hoped for, when that little baby is handed to us the other rule of childhood applies: you get what you get and you don't get upset. The checklist is gone. Your baby is here. You have one job - love them.


Because what is most unfair is the lie we tell ourselves about how accepting we are of differences. The lie we have deep down where we don't want to admit. The lie that comes out the day you are looked in the eye and told that life really is not fair. To see how unaccepting we are of people with disabilities we only need to look at the termination rates after a prenatal diagnosis or the reaction an adult has to learning that they now will be switching teams from able-bodied to disabled. Life is over. A life with a disability is not worth living, apparently. That decision is not fair.

We have such a double standard going. We pat our kids on the head and tell them that they should be nice to the little kid in the wheelchair. Don't stare at the little girl bouncing on her toes trying to fly. Don't point at the little boy who looks a little different. Be nice. Be friendly. Just don't you dare be my child.


I'm told often by the amazing community that I find myself in that living with a disability is not that bad. I have many friends who tell me that having a sibling with a disability is not that bad. Having a partner with a disability, a coworker with a disability, a neighbour with a disability, a friend with a disability... All not that bad. Most would say not bad at all. I can tell you in all honesty, having a child with a disability is not that bad. Not at all what I thought it would be. We have had a few rough patches, yes, and a few awkward moments, but that goes with having kids, no?


Six years ago today, my incredible daughter Rachel was born and I was forever changed in ways that there are just no words for. What I wanted for her in that moment was the same thing I still want for all of my children: to know in every second of their lives how deeply and madly they are loved, just as they are. It does not take an extraordinary woman to feel that love or an extraordinary child to receive it. And though I do happen to think that my three are quite extraordinary, Kingsley is not more or less worthy of such adjectives than the other two. He's just a kid. I'm just a mom. His disability isn't his whole life anymore than its mine. It may not be fair, but it certainly is not the end of the world.

If you ever find yourself in that position of discovering that your child is not going to be who you thought: relax. It's not going to be that bad. You are strong enough, you are amazing enough, you will do just fine. There's no need to panic. Remember that people with disabilities are people. They love, they laugh, they play, they communicate, they live. If you can get over yourself, you will do just fine.



Sunday, May 8, 2011

Last Week

All three times that I have been pregnant I used Ann Douglas's The Mother of all Pregnancy Organizers.  I love this little book. Week by week, I documented how I was feeling, what I was craving, the lack of exercise I was doing, and how much action the baby was giving me. The other thing that there was space for each week was what else was going on in my life and in the world. One day when they ask to see their pregnancy book (because they ARE going to care about this, they ARE, even if I have to pin them down and read it to them ;)), they will be able to sample a little bit of history. Like how Hurricane Katrina hit when I was pregnant with Rachel and gas prices rose to $1.33/litre (astronomical at the time!), and how we bought our first house, then I got in a car accident when I was pregnant with Cordelia, and how Michael Jackson died when I was pregnant with Kingsley. Their own little time capsule.

Thinking about those books made me feel like I need to comment on three big things that happened in the world this past week, as well as three other big things that happened in our own little world.


The first big world thing, as most of you already know, are that Prince William married Kate Middleton on April 29. Kingsley was not up to see the wedding, nor was I. He did wake up at 6am (wedding time in England) and I ignored him (we are doing a bit of sleep training right now) and stayed in bed, however I did pick up my phone and google "Kate Middleton wedding dress" and came up with nothing new. Then I went back to sleep. Later on that day, I watched the wedding with the girls, but Kingsley was napping. So, there ya go, Kinger (because I know that one day he will be fascinated by his own blog!), you can tell everyone that you know where you were when Wills married Kate. 

The next big world thing, as I'm sure all of you know, was that Osama bin Laden was killed. I have no commentary on this, other than to say that it was/is a pretty big deal to a whole lot of people and I feel like it warrants some mention. It was a very rare evening in the Bell house because we went to bed early and missed every single breaking news bulletin. Kingsley (in the midst of sleep training still) was up screaming at 2am and Jeff felt the need to pass the time by checking his CrackBerry. I was half asleep when he told me the news and I recall wondering if he was talking in his sleep or if that actually happened.  It did.  

Lastly, as some of you know, we had another Federal election in Canada on May 2. I will spare you my commentary on this one ;) Stephen Harper, the Conservative leader, won a majority government. Four more years. OK, I will say this: I am afraid of what it will do to health care and how it might effect Kingsley's future in that regard. I get quite anxious if I think about it, so I don't. We'll see. 


And while all of these big things were going on in the world, we had our own big events. Of course, Kingsley wheeled, then rolled, then got mouthy. He also got a new pair of boots. They're actually AFO's - ankle-foot orthotics. They're pretty cute. Perfect timing as they protect his feet when he wheels into walls and doors. They keep his left foot in the right position (his foot/toes stay pointed, like a ballerina, otherwise) and provide support for him in the stander. 


Even more exciting, we celebrated Easter! Sadly, the kids did not rock the coordinating outfits quite as well as they did last year, although with no planning at all, Jeff and I both ended up matching the kids. We're just good like that. ;)  


Easter was lovely.  What  made it all the more lovely was that my niece and brother-in-law were in town for the week and we got to spend a lot of time with Kamille! My sister and her family live in BC so we don't often get to see them. This is the second time this year that Kevin has brought Kamille home to visit while he works. I am always thrilled to have her hang out, as are the girls. Kingsley was just considered baggage at this point, as he cannot yet be bossed around. Holy moly, three girls sure are interesting to listen to! 


There. A week in the life. I guess that's more than a week, but you know what I mean. 

Thursday, February 10, 2011

The Study

Bzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz...

Hear that? It's a community of SB folks all buzzing about the Big News.

It is big news, huge, collosal, big news. There was a study that came out that was nearly a decade in the works. It's been discussed and disected and speculated on, but now there is evidence, there are results, and there is print. http://www.nejm.org/doi/pdf/10.1056/NEJMoa1014379

The question was this: if damage to the spinal cord and development of Chiari and hydrocephalus all worsened throughout a pregnancy, what would happen if the back was closed while still in utero?  It sounds almost too far fetched to be real. I remember first reading about it and being just speechless. Dumbfounded. How could that even be possible? But it is. They slice the mom open, take out the uterus, cut it open, find the baby's back, do the closure, sew up the uterus, tuck it back in, sew up the mom and cross their fingers for the next few months.

I am in AWE of the doctors and nurses doing these surgeries, I am in awe of the 183 women who agreed to participate in the study.

We were not given the choice to participate. You have to be living in the United States and we aren't. Naturally though, we wondered about what we would choose if we did have the choice.  I have no idea. I'm inclined to think that we wouldn't, but that just seems like the easiest choice.

The results of the study, if you haven't heard, are that children who have the prenatal surgery are less likely to need a shunt for hydrocephalus and less likely to need supports to walk.  There are other details, but those are the take-home points. The surgery is not without it's own problems though. There is a very high risk of preterm labour and birth, as well as some complications for the mother (which I'm sure most moms would brush off at the opportunity to help their child). 

There is so much talk about the study today. So many regrets, so many What If's, so much reflection on and pride in what choices we did or did not make. I can't look back with regret and I don't really have any interest in wondering What If...  We (those of us with SB kids age 0-7ish) are a unique group in history. We will be the group that wonders. Before us, it wasn't even something to consider.  Our group didn't have any evidence that it would help and yet some took a huge leap of faith anyway. From now on, there will be more informed decision making. A new generation to come.

I guess that's why I'm so unsettled by the study. It brings up the uncomfortable feelings about the implications of prenatal diagnoses.  I keep hearing that it's a great thing for getting diagnosed prenatally - that maybe women will choose this over termination. I don't see it that way. If anything, it is now offering women three choices: terminate your pregnancy; drop your life for 4 months and move to one of the big cities and go through the surgery to give your baby the best chance; continue with your pregnancy and your life and deal with it when the baby is born, always wondering What If.  How realistic is it to think that any random woman who receives the diagnosis for their baby is going to be able to participate? I can't imagine having to leave work when I found out (wouldn't have qualified for EI then), leave my children, leave my husband, deal with the financial side of not working and not living at home, and go through that in Toronto even, and I have amazing supports! I feel like women may now think: Well I can't give them the best chance, so better to go with no chance. That makes me sad.

It's all moving in the right direction though, don't get me wrong. Part of me is sad that it's a huge research success that Kingsley will not benefit from. The other part of me recognizes that it can open the doors for so much more attention, research, and answers to all of this SB stuff. I remember googling and hesitantly asking both our neurosurgeon and OB if there was ANYTHING I could do for him - take more folic acid, go on bed rest, stand on my head, just throw me a bone! The feeling of helplessness is overwhelming, knowing that your baby is inside you possibly becoming more impacted by the diagnosis on a daily basis and there is nothing you can do about it. I am so happy that some women won't have to feel that way, that someone will be able to look at them and say yes, there is something you can do.

So, there. Those are my own rambly thoughts on the subject. This is Kingsley's Serious Face for the Serious Topic. ;)

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