Thursday, March 22, 2012

Explosion

They all said it would happen. They all said it was coming. Just be patient. Just wait him out. No reason not to. All in his own time.

And as usual, 'they' were right.

Kingsley is starting to talk. Just like that. Out of nowhere. His vocabulary has pretty much tripled if not quadrupled in the last two weeks. Now, given that he had a vocabulary of about 5 words, it's not like he's caught up or anything, but in time.

He's babbling, he's making new sounds, he's imitating, he's labeling and requesting (manding folks, I have manding!!).

he also got a rockstar hairdo this week


Naturally, we start speech therapy next Wednesday.

I think this is it. He's mastered sitting and crawling and transferring from crawling to sitting. He's a pro at rolling and steering and every other gross motor skill he can tackle right now. The kid is doing chin ups for Pete's sake. He's playing and colouring and eating (sort of). He's kind of run out of things to master, other than the talking. So, talking he is.

*sigh of relief*

Once again, I reference one of my fabulous mentors who has never yet been wrong. :) http://themclellands.blogspot.ca/2011/01/taking-scenic-route.html

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.



Tuesday, March 13, 2012

*drum roll*

I promised pictures. 

All we've been doing is a lot of living and fighting colds. And more colds. And more colds. I went nearly 2.5 years without getting sick at all - I think it was the universe's way of recognizing that I had quite enough going on, tyvm, but that time has passed. I've had probably three colds in the past two months, maybe four, I can't remember. For some reason, my children love sneezing in my face, wiping their nose on my cheek, drooling on my pillow, and any other disgusting way they can find to ensure that if they're sick, I'm sick. It's working. 

Anyway, between these lousy colds, here's what we've been up to. 

We went skating again. Kinger, Cordelia, and I went with a friend of mine. Both Kingsley and Cor amazed us! They had a great time, no complaining and both attempted going out on their own! Kingsley didn't quite have the strength to dig the picks into the ice and push off, but he did a nice job of tapping the ice and had tons of fun being pushed around and around and around. 

It was my birthday! My mom brought this lovely hat over for me. You should've seen King's face light up when he turned around and saw it on my head. I have no idea why, but Kingsley loathes toques, but will wear any other type of head wear without complaints. 

Kingsley also seems to be convinced that every time Happy Birthday is sung, it is sung to him and him alone. He loves it. He also likes to cover his ears when he's really excited about something. 

Kingsley is a moving machine lately. He is so comfortable going up and down and over and back and every which way. He's great. It seems crazy that just a few short months ago, I was in tears over him suddenly being able to get up on all fours. He practically lives in this position now. 

I don't know what it is about this picture that I love so much. It just captures him so well - the blurred arms as he reaches out and signs for me to pick him up, the determined look in his eyes as if he's daring me to NOT pick him up, the way his mouth is mid MOOOOOOMMMMM!!!

My kids are born yogi's. Kingsley has very tight hamstrings, but the rest of him is bendy like his sisters. This is a bit freaky to see him bend back over his Bumbo in real life, but when he wants something, he figures out how to get it. 

The weather here has been GORGEOUS! We didn't have much of a winter at all and it suddenly feels like spring. I even have tulips and rhubarb starting to pop up. It's crazy. It's King's first spring/summer officially on wheels, so we've been a little scrambly on how to make outside work for him. He wanted to crawl in the grass and on the driveway, was convinced that he could go over curbs and would get SO MAD when he'd get stuck. every. single. time., loved chasing the girls down the sidewalk, and had a total blast in the sandbox. We will figure this out. 

The girls are spending the night with Jeff's mom and I desperately needed some way to keep Kingsley happy, as I am nowhere nearly as entertaining as they are. I took him to Michael's to get a few things for Rachel's birthday party and we ended up in the back corner of the store. King so badly wanted into the EMPLOYEES ONLY door. He kept going at it from different angles, as if I wouldn't notice if maybe he backed in to the door instead of going forward, or maybe he could just sidle up next to it... This is the action shot of him backing in to it. 

After Michael's, we hit the library. To get him OUT of the library, I had to put something really interesting in his hands (so I could steer him out!). I found a Backyardigans DVD. I don't know how it happened exactly, but King has fallen in love with Tyrone from Backyardigans. I love watching him watch this show, he gets so excited. He laughs and dances and laughs and dances and yells MOM!! MOM!!!!! to make sure I know each and every time Tyrone comes on screen. 

To fill the time after nap, before dinner, we went to my parent's house. Kingsley had some fun in the doll house. Literally IN the doll house. 

He tried very, very hard to get through this little door. He could get his head through and that's about it. Good effort, buddy. 

My Dad will shake his head at how horribly cropped this picture is, but I do not care ;) I love watching my Dad play with my kids. He's so good with them, which kind of always catches me off guard. Kingsley adores him. I can still hear the joy in my Dad's voice when I called to tell him that I was having a boy - he's the fifth grandchild and first boy. He adores his granddaughters, but as this was his last shot at having a grandson, I think he was quite relieved to finally get a grandson. 


That is it!


Thursday, March 8, 2012

The Next Study

There is a study happening right now and they are recruiting 2000 women with children who have SB and 1000 women with children that do not have SB. It's very easy to participate: complete a short online survey and then they will mail you a kit to complete a saliva sample. They are looking at possible genetic factors that cause SB. I don't know what the non-SB survey involves, but the SB one has the usual questions about height and weight when you got pregnant, ethnicity, folic acid (shocker, eh?), and a few other simple things like that. It's pretty painless and nothing we haven't been asked 100 times before.

Click here to participate: http://sbgenetics.org/sbgenetics/enrollment.html

I get so torn up over studies on SB-related things. Similar to the feelings I had after the prenatal study, I can't help regretting that, for us, it's too late. If they do find a genetic indicator, it won't help Kingsley. If they find anything related to cause, it won't help Kingsley. It's a done deal. That makes me frustrated and sad.

I remind myself though, that this is so vital not for me, not for Kingsley now, but for his future family, for Rachel and Cordelia and my two sweet nieces. If there is a genetic cause, I need to know for them. They need to know if they're carrying something, they need to know what they can do to prevent a NTD if/when they decide to have children. Kingsley is the first person in either of our families to ever have a NTD that we're aware of, but Jeff and I both have cousins starting families - what if there is a genetic link that extends to them? What if, what if, what if. We need answers. Folic acid is a big part of the equation, but it doesn't answer our big WHY.

So, if you can, click that link and participate. Spread it around and keep it going until they reach their quota.





Thursday, March 1, 2012

Living

I've been a total blog fail!  I've been blanking on anything to blog about lately, which I suppose is a good thing, right? We've just been doing boring life stuff, no excitement, no drama, no scares... just the way I like it!

And so for the second  time this year already, I'm going to do a pathetic little recap of all the big things in our life that we are currently consumed with...

1. Rachel's birthday. It's on March 19 and we are planning an epic Mermaid party to beat her Fairy party from last year. When I say 'epic' I do not mean that this will be the type of party that ends up on pinterest, because I am just not that put together, but it will be awesome for her... thanks to pinterest ;)

2. My birthday!! It's next week and to celebrate, I'm going away for the weekend. I've never done this before. It's funny because I'd be the first to give someone a funny look when they say they can't leave their non-breastfed kids, but even though King is no longer attached to me I just haven't ever gone away. So, I'm going. Two days without children or Jeff. I'm giddy with the thought of it!

3. Kingsley finally got his custom seat for his wheelchair! It's GORGEOUS and makes his ride look so cool. He loves it, I love it. I have no pictures. Total fail.

4. Skating! I took Kingsley and Cordelia with my friend Jen and it was a total success!! I'm just so proud of the two of them. We're going to start going a lot more regularly.

5. We are waiting to start speech therapy. He's at the top of the list and we just need to get ready for the call. In the meantime, I feel like he's communicating more and more. I'm so torn on this whole speech thing, it should probably have it's own post, but oh well. ;) I swing from KNOWING that Kingsley does things in his own time and worrying that things don't always go the way they're supposed to with him. Really, if I don't think about it, it doesn't bother me at all. I understand most of what he's trying to communicate to me and he responds as if he understands everything I'm saying to him. Speech will come.

6. Yoga. OK, this is just what my life is revolving around! My beloved Moksha Yoga finally opened another studio TWO MINUTES from my house. 'Love' doesn't begin to describe it, I pretty much want to camp out in their parking lot. I used to go to hot yoga all the time before kids, between pregnancies, and then life just got insane after Kingsley and I haven't been back on my own. I didn't know how much I needed this until I stepped into that hot room and felt like the weight of the last three years just lifted. I get up at 5:15 in the morning to go, that's how much I love it. The downside is that I tend to go to bed a lot earlier and obviously my blogging time has faded away. I'll work that out.

7. Crafts. We've created a crafting monster. Actually, I love it. The three kids sit at the kitchen table together and craft. Kingsley's mediums are crayon and sticker. He's getting quite talented. Mostly, I think he just loves being there with his sisters doing big kid things.

And, yep, that's about it. King's doing great, he's gotten over his colds, he flies around the house getting into trouble, and he's expanded his Love List to include Tyrone from the Backyardigans in addition to Elmo. He's having another brush with fame, but that I really will save for another day. ;)  And I'll start taking pictures, too!

Happy March!
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