Sunday, June 26, 2011

The Other Kids

I have just one final Awareness topic for SB Awareness month.

When Kingsley was diagnosed, after the panic and shock subsided a little bit, one of the first things that ran through my mind (and I'm sure most moms who have been in my shoes) was: How is this going to change things for Rachel and Cordelia??  For me, it was a given that I was going to have Kingsley, but I know that many/most others take a moment to consider this and factor it into their decision. I've even heard of some OB's using it to push their agenda with comments about how any siblings' lives are going to be sub-par with a brother/sister with a disability. It seems to be a valid concern. 


When I was pregnant with Cordelia, I felt overwhelming guilt about having a second child and potentially ruining our happy little love triangle by bringing in this other kid. Less time for Rachel. Less attention for Rachel. And obviously I would always harbour secret favouritism for my first child, right, because there's no way I could love the second the way I loved the first. The whole thing was a bad idea, clearly. Then Cordelia was born. If you have more than one child, you know how this story ends.  I think pregnancy hormones really do make you stupid ;)

My heart could explode at the thought of this moment. 


I was certain that there would be no downside to having a third. Boy, girl, no matter. 

I hadn't factored in the big bad SB, though.


I want to say that it has only been a positive thing for the girls, but honestly that would be a lie. Looking back, I feel badly about those last four months of my pregnancy and the changes that Cordelia went through while I was so absorbed in my own thoughts. She was younger than Kingsley is now when we found out, still such a baby.  The pregnancy part was so unkind. 

But it ends. 

And your heart explodes just a little bit more. 

The girls still don't care about the SB stuff. They still don't fully understand it, but they've never been sad about it or felt badly for Kingsley. His equipment doesn't scare them, they think his therapists are great, they don't complain about me spending time with him. Up until Cordelia's recent string of doctor's appointments (GP, dentist, eye doctor), they were not remotely interested in the constant appointments he attended either, but now Cordelia insists that she should go too, in case there are stickers or flashy toothbrushes. ;) 


The first hospital stay when he was born was hard on Rachel.  A couple of weeks after he came home, I found her in tears. She didn't want me to take Kingsley to the hospital the next day for his appointment because she didn't want us to leave her again. It took her a while to trust that visits to the hospital did not mean staying there. 


The second hospital stay in November was hard on Cordelia.  For Rachel, the combination of school and Cor's afternoon nap meant that her days were fairly routine. For Cordelia, she was shuffled every morning between homes and grandparents, she saw me leave every morning, she just had chaos. On the 6th day, she begged me to stay home and just snuggle with her, just begged. I hate to say it, but we've got enough experience with this now that by the third hospital stay we had it all figured out and both girls nearly outshined their rockstar brother with their adaptability. 


That is honestly the extent of the negative impact this diagnosis has had on my other kids, full stop.  At three and five years old, they are unphased by so much and I'm immensely proud of them for that. At playgroups and playdates with other kids with various diagnoses, they don't blink - wheels, walkers, tubes, scars, they see past it. They're so proud of their brother and have no problem talking about him to other people, the same way they'd talk about each other, just so matter-of-fact about it all. It's not a new normal, it's a normal normal. 


So, when they tell you that this SB diagnosis is going to have a big impact on your other children. 


You can tell them...


You sure hope so. 


Because the alternative is 


Never getting to see how

Friday, June 24, 2011

Awareness

Awareness is a funny thing, isn't it? June is Spina Bifida Awareness month and I've been thinking lately about what that means. What is it that the general public needs to be aware of? The various international spina bifida associations have inspired some recent discussion on this topic as they seem to want to focus on two things: prevention and support. First, prevention. Second, support.


I understand this, truly. Prevention comes first on the timeline, right? Sure. As such, the vast majority of ad campaigns for SB awareness involve folic acid.  Folic acid has been proven to effectively reduce the likelihood of having a baby with SB. My mom told me once that when she was working in the SB world back in the 80's (she was a PT for the SB clinic Kingsley now attends), that every year there were about 12 kids with SB born, 16 on a really busy year. In 2009, there were 4. Kingsley was the only one as far as I know in 2010. This year there are another handful that I've heard rumors or know of (one born on Monday so send out some prayers for that little sweetheart and her family!). Between my mom's time in the SB world and mine two things happened: folic acid and prenatal diagnosis.  I would like to say that it's all folic acid that is the reason for this drop in stats, but we all know that's not true. I have yet to meet a parent of a child with SB that didn't get the extremely pushy Termination Talk at diagnosis.


I know that I am overly sensitive because I have a child with SB, but the prevention campaigns sting.

Take, for example, this one for my very own SB&HAO this month. "Every healthy baby is a victory" is the slogan. At first, you can think that it might possibly mean that the SB&HAO are going to be there to make sure that your baby with SB is going to be healthy and vital and have a fantastic life, right? Go team! However, then the poster continues with the message: "One in 1300 babies is born with spina bifida and hydrocephalus.  WE CAN CHANGE THAT... DONATE TODAY." I will optimistically assume that what they are intending to say is that every baby not born with SB is a victory for research and education about the causes and thus the ability to prevent it. The overt message is that folic acid can prevent SB (which it doesn't always), but the subtle message is that when that fails, take one for the team, Mama! Next time, you can have a victory!

And if "Every healthy baby is a victory," what does that make Kingsley? Apparently he's not a victory. He's not even healthy! It's no wonder OB's are heavy on terminating.


Awareness shouldn't be just about preventing. It should be about making the world aware of what SB is really like. What the diagnosis will really mean for your child. And most importantly, that our children, friends, parents, family members, coworkers, and neighbours with SB are healthy, wonderful people who are thriving and LIVING.


If you are reading this it's likely because you either have or have someone in your life with SB, or because you know me ;) I just need you to spread the word. Let people know about Kingsley or any of the other beautiful children out there with SB. Let them know that he is amazing and that we adore him and we would not want a life without him. He is my baby boy and he is a victory.


All that being said, I don't think anything gets my back up more than someone NOT taking folic acid for a planned pregnancy. If there is any remote chance that you (or your wife, girlfriend, etc) may get pregnant in the next few months, take folic acid. If your prenatal vitamins are making you sick, take a separate folic acid pill on it's own. You cannot get enough folic acid from your diet, no matter how healthy you are. It just doesn't happen unless your diet revolves around folic acid intake and it doesn't, does it?

In the 70's, it was acceptable to drink when you were pregnant, to smoke, and folic acid was not on anyone's radar. Healthy babies were still born, yes. In 2011, people who smoke and drink when pregnant are seen as gambling with their baby's health. Why isn't the same said about not taking folic acid? Just take it. It's not a guarantee, but believe me, the last thing you want to live with would be to be in my shoes and not know if you could've prevented it.


Edit: Misty also has some comments on folic acid that are worth a read http://www.mistyboyd.com/?p=141

Tuesday, June 21, 2011

Living, Part 2

June is Spina Bifida Awareness month in Canada.

In the US it is in October. Last October I participated in a blog link up where a whole bunch of people living with SB blogged about what life was like. I wrote about what life was like with Kingsley who was 8.5 months back then: Living There wasn't a lot that made Kingsley different from any other baby his age, other than a few moments of my day where he required a bit of attention. Eight months later, things are quite similar.


However, they haven't always been that way. Between October and now, that proverbial stereo had it's volume cranked to 10 for a good solid 4.5 months. Not only did we have to face the music, but it was the kind of music that gives you a headache and that is nearly impossible to dance to.  It was stressful, it was consuming, and it was really painful to see my baby boy have to go through the things that he went through. I guess that is what living with SB is really like though - the stream of months or years of just life, mixed with episodes of panic and anxiety and dread that slowly fade back to life. Right now we are just living and life is really good.

Kingsley is almost 17 months old and has five diagnoses on paper now: myelomeningocele spina bifida, chiari malformation II, hydrocephalus, neurogenic bowel and bladder, and something else which means his legs don't move much, but I forget how it's worded.  Last year, the shunt, medicine, cathing and therapy were the only small things in our life that reminded us about the SB. The shunt doesn't scare me anymore, I barely think about it. We are fortunate that Kingsley (*knockonwood*) has not had any trouble with Billy at all. ;) He does his job and doesn't cause us stress and that's just the way I like it. The medicine is equally mundane. I give him his meds on schedule (at diaper changes so I don't forget), they work, everybody is happy. Likewise, cathing is just still part of our routine four times a day that I barely think about. I still avoid doing it outside the house and usually I'm able to work it out so that it's done at home without causing us too much trouble. Jeff can do it, obviously, and Jeff's mom is able to do it now, which means that if she's babysitting I don't have to time my outings around it. My mom has also offered to learn whenever we need her to, but we just haven't had a need yet. I guess I don't get out that much ;)


Therapy wasn't too cumbersome for the first year and it's still not, however everything to do with therapy is bigger and more involved. He has AFO's that he wears on his lower legs and feet every day. I don't know why, but people tend to think they are sandals. Maybe because of the velcro strap? For whatever reason, they don't get a lot of attention. They protect his feet from bumps and squishes, as well as keep them in the correct position for standing. They don't bother me at all and they don't bother him at all.


King has a bunch of 'equipment' now.  He has a seat (basically a seat back with a strap around his waist) to help him out when he's playing on his own on the floor since his sitting is not 100% yet. He also uses a Bumbo seat on the floor, but it's a bit trickier to get to the toys when he's raised off the floor and has that between his legs.  I only use these at home when I'm not with him. He gets to play independently and I get to make dinner. Win-win ;)

He has his awesome Bumbobile that is teaching him the basics of wheeling. Our house is not yet conducive to wheeling, so his practice space is limited to the front hall and the kitchen. He uses it when we're playing outside and at his playgroups where he gets to be low to the ground where his friends and toys are.


Lastly, he has a stander. He cannot bear weight on his legs, so this holds him in a standing position to get the physical benefits of standing. He doesn't have any set guidelines for how long and how often he's supposed to be in it. I aim for every day for as long as he wants to be in it. He loves it and as long as you keep the toys coming, he's fine for an hour.

In the next six months or so, we plan to get him a mobile stander (think: stander + wheelchair) and a wee little wheelchair and that may or may not round out his equipment for the next few years. Things to consider still, but that's another post. ;)

I'm not sure that Kingsley's (lack of) eating qualifies as an SB issue or not. In a roundabout way, it does, but since there are plenty of kids without SB who don't love finger foods, it's not totally. He is still working on expanding his diet. It's getting better, but it's slow. He will eat most finger things like dried cereal and puff/chip/cheesie types of things and bread or bagels. Otherwise, oat cereal and fruit, yogurt, and those yucky jars of pureed casseroles. Blech.

He's laughing at his sister's running around the house.
Eight months ago, Kingsley's SB was still invisible. Now, it is less so. People notice that he doesn't walk. They notice that he doesn't stand or crawl or sit on his own. I am constantly being asked and then asked again and again how old he is, as if they had heard wrong or remembered incorrectly the first few times. Then there's an awkward silence while they debate whether or not to ask and I debate whether or not it's worth explaining. I have heard about everyone's son/daughter/niece/nephew/grandchild/neighbour who ever was a late walker in the meantime. ;) 

People said that SB would become our new normal and I've been thinking about that a lot lately. It doesn't feel like a new normal, it just feels like normal normal. Some kids have wildly curly hair, some babies have colic, some kids are really small or really big.  I don't have to adjust to carrying Kingsley around the house because I've never known any different. He gets carried (and snuggled), he gets cathed, he gets meds, he has therapy. It's just the way he is.


Also, Kingsley is almost 17 months old now. He's about 22lbs, which is on the small side.  He still has his big blue eyes and his hair is still blonde. He likes cars, rocking on his bike, playing in the sandbox and water table, loud banging, funny stories, tickling, looking out windows, reading books, and he thinks his sisters are hilarious. He prefers me over everyone else. He is pretty quiet when we're out in public, but when he's comfortable he has a whole bunch of words like Mama, Dada, and Nana, approximations for Rachel, more, milk, book, ball, nigh-nigh, burp, bath, bubbles, up-up (to stand up in his stander), down-down (to come out of his stander), Grandma, Grandpa, and bye-bye, and signs for all done, no, and bye-bye.  He also likes to sing. He's started to colour on the art easel, stack blocks, roll or throw balls, and put things in and out of toys. He rolls both ways and wiggles to get himself around.  He sleeps through the night. :)

Right now, we're not really living with SB, it's mostly living with us. We pass in the hall, nod and say hello, and then carry on with our day.





The other blogs that were involved in the first link are these:

http://elementaryspirits.com/2010/09/it-took-me-12-years-to-tell-this-story/
http://ourlittlegibblet.blogspot.com/2010/09/2-years.html
http://riddingfamily.blogspot.com/2010/09/gift-of-spina-bifida.html
http://lipomyelomeningocele.wordpress.com/2010/10/02/reflecting/
http://www.mistyboyd.com/?p=24
http://www.caringbridge.org/visit/lillychavez/mystory
http://www.caringbridge.org/visit/lylacespedes
http://www.mistyboyd.com/?p=32
http://www.caringbridge.org/visit/bryceanthony
http://www.livingthesunnylife.com/2010/09/bruised-heart/
http://oursbjourney.blogspot.com/2010/10/how-2-words-can-change-your-life.html

Sunday, June 12, 2011

Toronto, Take Two

Last summer I had the dreadful idea that taking three kids to Toronto for a few days would be a wonderfully fun adventure for us. Turns out, I was very much wrong! So, last month when the idea of taking the kids to Toronto for a weekend came up, I was a little hesitant. Fortunately, there were some pretty enticing people to visit and so I began to plan.

It took a long, long, longlonglonglonglong time to find a suitable hotel.  Note to readers: Toronto hotels frown upon having more than one child.


By some brilliant stroke of google magic, I did manage to find a suite hotel in the perfect location. It was fully accessible, pretty, and clean. Yay!


And it only took us 3.5 hours to get there! (that's a sarcastic nod to Toronto traffic which makes me want to curl up in a ball and cry - we only live 2 hours away)

I spent a lovely afternoon (sans kids and Jeff!) at the King Edward Hotel having high tea in honour of one of my dearest old friends, Gloria, who is travelling the world and getting married in 8 months. It was so awesome to get to see her (she's currently living in England)! She came back to the hotel to meet Kingsley and visit with the girls.

By some stroke of hotel magic, the kids actually went to sleep easily!

But of course, did not stay sleeping!

We got up bright and early Sunday morning to head off to the ZOO!!! I've never been to the zoo, so I was pretty excited. The place is HUGE! Definitely a place we'll have to go back to and see more of.

 The girls were really excited.


Kingsley was a bit bashful. Probably because he knew he was going to meet...

They don't look it, but they really were excited to meet. ;)

Nickolas! Nick is two months older than King and has SB as well. His mother and I met online and have been chatting about the boys for over a year now. We finally got to meet! Nickolas has a sister almost exactly Cordelia's age, which was perfect.


We only ended up seeing the African animals, I think it was, but that pretty much covered all the big cool ones like elephants, lions, tigers, rhinos, and hippos.

Rachel said she didn't think the elephants were that big. I have no idea how big they were in her mind before seeing a real one, but trust me, they are HUGE in real life!


Kingsley wasn't that impressed with animals. He's such a people watcher. A shy people watcher!


Amanda and I got to chat and have the totally surreal experience of meeting someone for the first time, after you already know them. In all my planning, I failed hugely in the wardrobe department. Why didn't I think of wearing our shirts?? It's our month and everything! Next time.


I had a Harry Potter moment whenever we saw snakes. First, they give me the willies. The glass cannot be thick enough. Even this picture has my skin crawling. Second, Rachel kept leaning on the glass or tapping it and I had visions of Dudley Dursley falling through and kept yanking her away. Brazil, here I come.... 

More bashfulness

Eventually, we had to leave. Cordelia was a sleepy mess and Kingsley had conked out in the stroller. It was a faster drive home, thankfully, and other than a sad boy at our pitstop I would say the day was a success. Amanda and I are already planning the second meeting, this time with Zachary (and his family of course!).

This face is the reason Kingsley will probably always get whatever he wants. It's the saddest face ever and makes me melt! Sweet little guy.

Wednesday, June 8, 2011

More Wheeling

Yesterday I took the kids to the mall to give Kingsley some open space to practice in his bumbobile. He's getting really good, but is quite limited in his ability to actually go anywhere in our house.  The mall is under construction so the upper level is basically empty. We saw maybe 10 people up there, which was sort of interesting. No one really seemed to know what they were looking at when they saw King sitting there on his wee wheels.  One woman did see him wheeling and gave him a big cheer of encouragement at his soon-to-come independence, which was sweet.  It was a bit of a gong show otherwise as Cordelia was in her three-year-old glory, but Kingsley did show off a bit which is all you really want to see, so I'll stop typing. ;)

Friday, June 3, 2011

Sunglasses

Haha, Momma! I got your sunglasses.

How do these things work...?

Ah-ha! You can't see me!  

Just kidding, Momma, I'm right here. 

I'm pretty cute. Go on, you know it. 

I wanna wear them on my head like you do.

Oh, oops, um...

Ah, got them! 

Ha HA! Sunglasses are mine again!

Hehehehe. I'm wearin' your sunglasses again. 

Let's cruise, Momma. 


We were in the parking lot waiting for Rachel to come out from school. He is obsessed with sunglasses lately. Loves them. Truly, a rockstar in the making. 
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