Showing posts with label diagnosis. Show all posts
Showing posts with label diagnosis. Show all posts

Monday, October 20, 2014

Dear Parents

On the first week of school we had Kingsley's teachers put a letter in all of his classmates communication bag to be sent home. This is something that we will likely do for the first few years he is at the school, until he's able to just talk about himself to his peers on his own.

Our reasoning for this was a few things. First, we know that people are curious. The parents of his classmates are going to wonder why a kid his age is using a wheelchair. The kids would find out, but if other children are anything like my children the parents will only hear half the story and it will be a very confusing half. We don't want his wheelchair to be the elephant in the playground that no one wants to ask about. We don't want awkward hushing when kids comment on it. We don't want Kingsley to be left out 'just in case'. There is fear of the unknown. We put the parents out of their misery and just told them outright.

Second, people don't know what SB is and this is a simple way to spread awareness about what Kingsley's diagnosis means for him and where to get more information on it.

Third, it was a quick and easy way to establish our hands-off policy regarding Kingsley's wheelchair and let families know to start watching out for latex.

And finally, we want parents to be able to talk about SB and Kingsley easily with their children. If their child does come home with a question about whether or not Kingsley can stand up for example, they have the information to answer them frankly and discuss at their child's comprehension level.

Here is the letter that we sent home (it had a cute picture of King at the top that Jeff added in at the last minute and I don't have, so I'm faking it with this one). Like I said, I have had a few parents mention how much they appreciated it.


Dear Parents,

My son, Kingsley, is in your class this year. He is easy to spot - he’s the one on wheels! Some of the SK’s might remember his sister, Cordelia, from their class last year. It’s natural to be curious about people that are different and we want his friends to be comfortable around him instead of making him and his wheelchair a taboo subject.

Kingsley was born with spina bifida - a hole in his back where the spinal cord was exposed and nerves were damaged. The hole was repaired right away, but the damage is permanent. He is not sick, it is not contagious, and he is not in pain. He is just like every other kid in the class, except that he is paralyzed below the hips and cannot stand or walk. He is okay with this! He loves his wheelchair and is very independent with it.

His wheelchair is pretty cool, but we are very strict about kids not moving it. This is both for his safety and because he doesn’t like it. It would be like another child picking him up and moving him against his will or giving him a big shove - a little bit rude and also pretty dangerous. It’s okay to look though! And if you’re quick you can get a look at his sticker collection or the flashing front wheels.

Kingsley has a suspected latex allergy. He has to stay away from it as much as possible. If you bring in something special to share at holiday times, please make sure you do not send in balloons, latex erasers or pencils with latex erasers.

If you want more information about spina bifida have a look at www.sbhao.on.ca If your child comes up with more questions that you’re not sure how to answer, feel free to email me anytime (email address).

See you at school!

Jill, Jeff, and Kingsley

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, November 18, 2013

Casts Off

The casts came off today.

It was a very strange day. Kingsley didn't want to take the casts off. He kind of gets set in his ways that way, once something is a certain way it has to be so. I don't think he was actually attached to them, but we did make the mistake of calling them 'Thomas blue' to match his Thomas costume and so he was very sad that he'd have to have his Thomas Casts taken off. He's very sad that Halloween is over.

His casts were cut off without any drama (though don't you have that moment of panic where you're sure that the saw is going to accidentally slice through skin??) and his surgeon came in to check on him and see how his legs had healed. She was very happy, they're straighter than even she thought they'd be able to be.

Kingsley lay there as the three of us stood over him - the man with the saw, the surgeon and I. I was watching his legs as we were chatting and suddenly I noticed something.

"He can't kick."

His surgeon tried to reassure me, he'd probably need some time to strengthen the muscles again, he'd get the strength back...

"No, I mean he couldn't kick. He can't do... that."



This whole thing came about because Kingsley has a bit of hamstring, but no quad. He can pull his legs up, but not put them back down. He bends at the knee, but not straighten. Not at all, ever. He pulls his legs up, bending his knees and unless gravity pulls them back down, they stay there, bent. 

"IT'S A CHRISTMAS MIRACLE!!" the saw guy seriously said that with a huge grin and I almost high-fived him. 

His surgeon thinks it's more likely that he was so tight he wasn't able to push back against it, but she couldn't say for sure. We will have to see what happens next. 

I made him do it over and over and over and over. We got home and I made him keep doing it. 

In. Out. In. Out. In. Out. 

I was so excited! 

You know the term 'bittersweet'? It pretty much defines SB. Right in the middle of giving King another thumbs up for kicking me I heard this bored voice in the back of my head: so what?

So what. 

Really, what does it matter? He isn't going to walk. He isn't going to stand. It's very sweet that something new and unexpected happened, that the surgery was such a success, but nothing really changed, that's the bitter truth. 

Wahn, wahn, wahn....

I am very thankful that the surgery was such a success. I'm trying to see this new little movement as a sign that he really did need the surgery to happen. As a parent, entering the world of 'elective surgeries' is a very scary place to be. Potentially putting Kingsley through a surgery that ended up being useless somehow making things worse would be dreadful. That didn't happen, so huge sigh of relief there. 

Before and After: the top is before, which should be obvious. This is as straight as his legs would be when he lay on his tummy. His feet are upside down, sorry, but you can still see how pronounced his 'ballerina foot' was compared to now when it's just a foot. 

Tomorrow, we see his orthotist and he will be fitted for new AFO's and we will talk about RGO's. Kingsley has loved being able to be lifted into standing at any time with his full leg casts/splints on the last 5 weeks. He has finally expressed an interest in standing and walking, which has never happened before. This is perfectly timed with new gear that will get him more independently upright than his stander. He will need a lot of motivation to use RGO's and he seems to have it. Fingers crossed for our next adventure.  


Wednesday, October 2, 2013

Talking to YOUR Kids

The little boy peeked around his mom's leg with wide eyes.
"Mom, what happened to him?" he whispered.
She looked over at us with equally wide eyes and quickly shushed her son.
"But, why is he in that?" he persisted.
"You can't ask that," she hissed, as she pushed him behind her leg again and continued to watch the show.
The boy peered out again and I caught his eye this time, as his mom looked over at me and made an embarrassed gesture.
"It's okay," I assured her, then crouched down beside Kingsley so that I was eye level with both boys, "He was born this way."
"Do his legs work?"
"Nope, that's why he has a wheelchair."
"Can he feel them?"
"Nope. It's kind of like if your foot fell asleep and you couldn't feel it."
He smiled up at his mom and then turned back to watch the show. Kingsley continued watching, oblivious to the conversation.

~

"That's Rachel's brother!"
"Ask her! Ask her!"
"Rachel! Why does your brother have a wheelchair? Hey, Rachel! What happened to your brother? Rachel!"
Rachel chatted on with her girlfriends, oblivious to the small group of boys behind her, pointing to Kingsley. At the same moment, two of them glanced up and saw me watching them. Their mouths snapped shut, but their eyes were wavering between curiosity and guilt. One bravely stammered: "Did he get hurt?"
"No, this is just how he was born."
"Do his legs hurt?"
"Not at all."
"Oh," they looked at each other and one shrugged before they turned away and carried on with their First Day of School reunions.

~

"How old is he?"
The little boy was standing with me just behind Kingsley, watching as he giggled and tapped the soccer players on the computer screen.
"He's three."
"That's like me!" he said delightedly, "E'cept I'm four."
I nodded, smiling.
"Can he stand up?"
"No."
"Can his legs work at all?"
"No, not really."
The boy thought for a second, then asked with a horrified expression, "But how does he PEE??"
I sat back on my heels, for once stunned by a child's question and unsure how to answer. Who was this kid and what in the world made him know to ask that? "Um... just like you..."
"E'cept sitting down?"
OH. Right.
"Yeah."
He slid in next to Kingsley and they kept playing together until it was time for us to leave.

~

The girls eyes followed us as we entered the room and sat down. Their table was not far away from us, so I heard as she turned to her mom and asked, "Mom... why can't he walk? Why is that boy in a wheelchair?"
Her mom glanced up casually at us and looked at Kingsley wheeling along behind his sisters.
"Well, some kids are just born that way. Their body can't tell their legs to move," she watched a second longer and then added, "His wheels light up, did you see that? Pretty cool."
As her daughter turned back to her ice cream, the woman glanced up at me, as if to gauge my reaction.  I smiled and gave a small nod.


Kids ask me about Kingsley all the time. Kids are naturally curious about the people and things around them. I am sure that adults are equally curious, but we have been taught to squash the urge to ask (or if that hasn't happened, we have a tendency to ask in incredibly awkward ways).

Kingsley is three. His speech is not entirely clear, when he chooses to acknowledge strangers at all. He doesn't respond or appear to care when people ask questions about him, so for now it's up to me to field the questions and I don't mind at all. I don't know if King will want to answer these questions or if he'll one day wish everyone would just shut up and leave him alone. Because of this, I feel a little bit inadequate as to what the universal 'right' way to deal with inquisitive children/people, but in my experience, most parents of children with a disability or adults with a disability would prefer you let your children ask, respectfully, and answer them as frankly and calmly as you can.

Here are a couple great tips on talking to your children about disabilities:
http://www.huffingtonpost.com/2013/08/02/disability-awareness-parents-teach-kids_n_3696279.html
http://crippledgirl.com/2011/03/tips-for-talking-to-your-kids-about-disabilities/

There was also an episode of Daniel Tiger's Neighborhood this past week that addressed a lot of the common questions I get about Kingsley when he makes friends with a girl who uses leg braces and crutches. It would make a great ice breaker for kids to get talking about disabilities: http://www.youtube.com/watch?v=jqjBSulEqYU


It's important to talk to them. To break down the fears of disabilities, differences, diagnoses, and equipment, we have to let children know that they're all okay. Wheelchairs are a wonderful thing. Communication aids are phenomenal. Hearing aids are fantastic. Feeding tubes are divine. They aren't scary, they aren't contagious, they just let kids be kids.


I talk to Rachel and Cordelia (and Kingsley) about differences and disabilities all the time. We recently read a couple of books about kids who use wheelchairs who are bullied (WHY OH WHY are all 'wheelchair' books about this?) because the other kids think they're different. They were flabbergasted. They literally could not understand why these fictitious kids could not see past the wheelchair and realize that the wheeler was just a normal kid. I love them for that and I so desperately wish that other kids felt the same way.


Sunday, September 15, 2013

If I Had Known

If I had known what life was going to be like right now, four years after we were told about Kingsley's diagnosis, I wonder if I would have reacted differently. Would I have gotten so upset if I knew how much he would laugh? If I had known how little his sisters would care about any of it, would I have worried so much? If I had known about the surgeries and the wheelchair, would it have made me feel worse? Maybe the way he loves to snuggle and his incredible independence would have negated some of the ache.

Jeff said today that this wasn't the kind of anniversary he remembered. I told him it's not the kind of anniversary I can forget.


But if I had known about how strong he hugs;

about how sweet his breath still smells, even though he's not a baby anymore;

about how funny he thinks he is;

about how much attitude he can give you when he's mad;

about how sweet his little voice is;

about how much he loves being read to;

about how much he loves trains and buses and trucks;

about how deep his belly laugh is;

about how he knows everything a 3 year old is supposed to know;

about how our life is still pretty awesome;

about how much we don't care about his wheelchair or any of it.


If we had known how much we would love him, anyway, in spite of it, because of it, regardless of it, not thinking about it, not caring about it, when we're immersed in it, when we don't even think about it... I think it would have been easier. It was easy to look at those doctors and tell them we didn't care, to walk out of there, to not look back. It was not easy to keep breathing after that. Had I known, it would've been.

Tuesday, August 20, 2013

The Big WHY

I debated posting about this before I had a conclusion to my story, but I am at the point now where I am not confident that the conclusion will ever come. And maybe that's just the way it's going to be or supposed to be, I don't know. 

A few weeks ago, on a Friday night, there was a knock on our door as I was putting the kids to bed. Jeff answered it and I just got to the door in time to see him signing something and accepting a big, thick envelope. 

Jeff's father was adopted as a child. Just before he passed away five years ago, he and his wife had been trying to trace his roots and find out about his biological parents. He had been able to find out a little bit, but his adoption records were sealed, his adoptive parents had both died, and so he could only go so far. Four years ago, the adoption records were unsealed. Jeff, his oldest child, asked for the adoption records of his father. Four years later, on a random Friday evening, they arrived. 

Jeff pulled out the file and we both chuckled at the introductory letter warning that the recipient should have supports in place as the contents might be upsetting or cause unexpected emotions. That night and the next day, Jeff read through the 100+ page file. Saturday morning, he casually called me over to read a line on one of the pages. 

I was not expecting to read what I read. 

In her own handwriting, Jeff's paternal grandmother wrote about her siblings. She had two, both married, the younger was in poor health and had trouble with her spine. 

Spine. 

Trouble with her SPINE. 

I must have read that line a hundred times and then devoured the whole report, anxious for any more information on this great aunt of Jeff's who had spine trouble, but that is absolutely all that it said. 

For forty-seven months I have been waiting for an answer. I have been swallowing the guilt, wondering what I could have done to make that itty-bitty neural tube not close. I know there's nothing I did intentionally, I did what I could to prevent it, this isn't 'my fault'. But it happened and without any other explanation, the guilt falls to me. 

But with those four little words, I could be absolved. 

Spina bifida can be genetic. There are many types of SB, one called occulta, which wouldn't have required surgery at birth or even have been known without the presence of problems. If Jeff's great aunt had some form of SB, then there is our answer. There's the WHY that we have been agonizing over for years. There is an answer for my daughters, for my relatives, for Jeff's relatives. 

IF is the big fat IF though. Maybe she just had a bad back and coincidentally it was called trouble with the spine. Maybe maybe maybe, if if if. 

Jeff's step-mom gave me contact information for the bit of distant relatives they had been able to get in contact with all those years back and I sent a message to a woman I think is Jeff's second-cousin. I haven't heard back. To say that I am anxiously awaiting a reply would be an understatement. In the meantime, I speculate. I imagine what it would be like to have the answer that I had long ago given up hope of ever getting. I imagine getting a blank wall and no answers, always wondering how close we are. Who knows. 


Aside from that, there was one other awesome little tidbit in the adoption records. Jeff's grandmother had red hair. So, the other big mystery in our lives has now been solved: we know where Cordelia's hair came from! 



Friday, June 21, 2013

The Big Wheels


“Why are they all staring?" demanded Albus as he and Rose craned around to look at the other students.
"Don’t let it worry you," said Ron. "It’s me. I’m extremely famous.” 

I have had that quote in my back pocket for two years now, just waiting for either Kingsley or the girls to notice the staring. People stare at Kingsley all the time. Sometimes blatantly, sometimes (not so)covertly. We have been at the girls school a lot in the past month so once again, I'm/he's getting the children gawkers and occasional brave question when they've slipped away from their parents: 'why does he use that?' Adults are different, they either avoid looking entirely, as if the wheelchair was wearing a wig of snakes, or they treat King 'special' because of it with waves, honks, extra candy (Halloween and Parades), and big 'HELLO!'s while ignoring his sisters.

People make assumptions about people in wheelchairs, that is becoming abundantly clear to me. Two major ones, I find. 

The first assumption is that they don't want to use their wheelchair, that it's some sort of burden. Let me clear this up right now: it's not. Kingsley LOVES his wheelchair. It is not as though he has the option of wheeling or walking and this is second place. His options are wheeling and being independent or staying where he is put down, waiting for someone to move him. Independence, at any age, is always preferred. Parents of kids like King often panic about this one: a life of confinement in a wheelchair, the horrors! How can they do that to their child? I can't speak for all kids, but I can never say enough how much Kingsley's life changed for the better when he got wheels. He was so passive before, never exploring, never moving. Now, he tortures me by trying to find ways to launch himself down any ramp at top speed. I am not burdened by his wheelchair. I love it. I love what it does for him. I love the independence he has. I do not love the lack of accessible kids activities, but I don't think this would be much better if he used a walker or any other mobility aid (were that possible, which it's not). 

I believe this assumption comes partly from our language, about which volumes have been written by the disabled community about our ableist biases. Right now, I don feel I need to get up in arms over whether Kingsley is IN a wheelchair or ON a wheelchair - I will one day take his lead on that - but I had a convo with my brother recently that I had to correct him on. He is a paramedic and was telling me a story about a call with a cool guy who was in his twenties, totally independent, nice guy, who uses a wheelchair. It went like this: 

BRO: ... so I was thinking about King the other day on this call, blah blah, and the guy was wheelchair bound so we got to talking about my [awesome] nephew and - 

ME: OMIGOSH!!!!

BRO: what? 

ME: with what? Is that why you were there? 

BRO: with what what? 

ME: what was he bound with? Ropes or chains? Did you have to cut him out of his wheelchair? Who did that to him???

BRO: oh. (Pause) Ah. Ok, ok. How do I say it? 

ME: he uses a wheelchair. Unless he was legit bound to it, but that would be abusive... Unless he's three and it's just a belt 'binding' him for safety... 

People aren't bound or confined to wheelchairs. They aren't torturous things. Like I said, the alternative is the state of confinement for Kinger. 

Wheelchair = freedom and independence
No wheelchair = bump on a log


The other assumption people make is a strange one. People assume he is intellectually disabled. I'm not sure what to make of this one. For starters, I'm not insulted by it as I do not think being intellectually disabled is an insult. I am just always caught off guard by it. Also, with SB there's a chance King may have learning disabilities once he gets to school. As of right now, we have no indication of any problems, he appears to be right on track with everything. 

The strange thing to me is how it's brought up. It's often by people I'm acquainted with. People who I'm closer to have just come out and asked if King's cognitive development has been effected and I'm fine talking about it. The main way others ask is by asking if King will go to the same school as the girls. I was so confused the first fifty or so times I was asked this. Of course he will? Where else would he go? I know in some places there are segregated or special schools. We don't have that at all here. There are a few classrooms in a couple schools for kids with ASD and then some for children with intellectual/developmental disabilities, and not all kids who fit either of these two diagnoses automatically go in those programs either, it's all case-by-case. Kingsley does not fit either criteria by a long shot. In fact, at this point I don't anticipate King needing any accommodations other than space, a private bathroom, and someone to help him take his mid-day meds, which we ensured when we switched schools. So, either people don't know that we no longer segregate kids with disabilities (which would be strange, since I'm pretty sure that hasn't happened in my lifetime) or they think he may belong in a special class. Which is a strange assumption since his wheelchair is the only thing indicating something different about him. 

There have been other comments also, like how I can keep him in high school until he is 21. Same idea, if it's needed, great. But I have no indication right now that he will need to make those victory laps to get through high school. Why would anyone else think that?

I have heard that as he gets older, people will start talking to me about him in front of him as if he can't understand or answer for himself. It happens now, but it's not abnormal to do this with kids his age.

People are strange about wheelchairs. I have tried thinking back to how I would have responded previously to someone using a wheelchair and I honestly can't remember. Maybe I was immune to stereotypes because I have spent most of my life working with people with physical and other disabilities and have had people-first language shoved in my face at every turn. Or maybe I was totally ableist and didn't even know it. Either way, I'm glad Kingsley is around to break down stereotypes for others. 

Friday, September 28, 2012

The Things I Wanted to Say...

So give me hope in the darkness that I will see the light
Cause oh they gave me such a fright
But I will hold on with all of my might
Just promise me we'll be alright
~ Ghosts that we Knew, Mumford & Sons

This week was Meet the Teacher night at the girls' school. Since they're going to school at the other end of the city by our soon-to-be-house, it didn't make sense to go all the way back home between, so we headed over to the closest library to hang out.

In the kids section of the library, my kids moved in like they were at home. Chairs were moved so Kingsley could get up to the table with the toys, Rachel sat down to see what computer games they had, Cordelia broke out the puzzles. There was another family there. A woman, her two daughters that were also playing with toys, and her two sons that were in and out of the shelves of books. They saw the wheels. I heard them asking their mom, pointing to him, sneaking peeks at me out of the corner of their eyes to see if I had heard them asking. I heard her answering, saying the usual things, telling them it was okay. I saw her hesitate for a second, then come over.

She asked me if he belonged to me. Nodded when I said he was. She said something about him, then rubbed her belly as only a pregnant woman can and told me that the baby she was carrying only has half of a heart. I wish I could describe her face as she said it. She was trying to be casual, just making conversation with a total stranger, but we both knew there was nothing casual about it. I could see the fear in her eyes. The pain she was feeling, but trying not to feel. I could see the tears that were always just almost there. I could see the intense bravery, the sheer will to be stronger than she actually felt.

I could feel the sigh leave me. In that moment, right there, I was back to that place where I sat three years ago. Back with the eyes that never smiled, the thoughts that were always somewhere else, the heart that was just a little bit broken.

We sat there and talked while our kids came and went, my three and her four. She told me about the surgeries her baby girl would be facing when she was born, all of the appointments she had, her worries about the other kids, her concern that she wouldn't be able to breastfeed, and the unthinkable fear that her little girl might not make it.

Her journey isn't the same as ours. They're facing longer hospital stays than us, separations that we didn't have to endure, long term issues that are different. But what we had in common was that last joyless pregnancy that we will never get back, the ache that feels like it will never go away, the dread of the unknown, and the simultaneous wish to just stay pregnant forever so that we don't have to face what comes next.

As we rounded up our kids and headed on to the evenings next events, she apologized for unloading all of it on me, said she was just glad to finally talk to someone who had been there and gotten to the other side. She looked at me, at Kingsley, at my girls and her face was full of that desperate hope that maybe, just maybe, this wouldn't be as bad as she secretly believed it was going to be. I had so many things I wanted to tell her. I wished so badly to sit there and take some of the burden off of her. I can take it. I have the benefit of hindsight to know that where she's at now is not where she's going to stay.

If I could've, I would've repeated to her the slogan of the SB world: pregnancy is the hardest part.  I would've made her remember the joy she felt when her other four babies were born and promised her that this birth would be just as joyful, that she really would love this child that much, even if right now she doesn't feel like it'll be the same. I would promise her that she will bond with this baby girl, even if she can't be with her as much as she wants to be. I also would have told her that although the dark cloud of pregnancy goes away, the hard part won't be over and for that reason, she has to learn to be selfish. Get through. She has to get through the hospital phase and she has to get through in one piece, and to do that she'll need to put herself ahead of everyone else. She'll have to demand help, demand sleep, demand support, raise that white flag and call in the troops because there is no possible way that she'll get through that part on her own. There will be epic highs and epic lows, not only because life will literally be hanging in the balance, but also because she'll be a hormonal disaster, let's just be honest about that.


I would also tell her that when she gets through the next year, she'll look back in amazement. She will feel humbled by all that she has seen and done and she will never see life the same way again. She will go through times where she feels like the worst mother in the world, where she wonders how her other children managed to survive with a mother who is so incompetent. She'll also go through times where she'll look at her children and secretly gloat that her friends wouldn't stand a chance against her in a Mom of the Year competition. She'll have times where she pleads for just one day without extras and other days where the extras are so routine that they don't seem like extras at all. She'll see the beauty in a normal day, where nothing happens and no one does anything exceptional. She'll begin to celebrate the most mundane of milestones and finally see them for the incredible gift that they are.

And before she knows it, she'll find herself sitting somewhere while her awesome kids are just being awesome kids and she'll come face to face with her old, scared, terrified, brave, wonderful self from three years ago and she'll realize that thing that someone told her three years ago is true: she's okay. She will still be watching awesome reality TV every other night, still be a slave to her laptop, still be staying up later than she should be, still lusting after boots, and still eating too much candy. She won't have lost who she is and her life will have kept on going. Her broken heart will be repaired, just like her baby girl's.




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.





Monday, November 14, 2011

We Met

I know you're all dying to know ;)

So, on Saturday our little clan all headed out for the SB workshop day at our centre. It was great! It consisted of a few information sessions on the anatomy of SB with levels/functioning information (check, check, memorized that bad boy last year), a discussion on equipment (which featured pictures of Kingsley in all of his various equipment pieces).

Probably the one piece of equipment we were not yet familiar with there were RGO's (reciprocating gait orthotics). For those of you who aren't in the SB world, I have no idea how to really explain them, as I never fully understood them until I saw them. They're basically bracing that goes up to the chest and if the person wearing them tips their chest backward, it pushes one of their feet/legs forward and mimics a walking motion. I think. I may be confused still. I only mention this because we've been looking into them for Kingsley down the road. They wouldn't mean functional walking like most of us do, it would mostly be for exercise and experience.

There was also discussion of hydrocephalus and shunts (check!), chiari malformation (check!) and tethered cords (check!). It made me realize that Kingsley is really making the most of his SB experience, haha. During this talk we got to see a SB doll. For real - a doll! It has SB, hydro, a shunt, Chiari and can have all kinds of spinal issues. You can even cath it and make it a boy or girl. I can't imagine ever needing one of these dolls myself, but it's cool to know they exist.

There was a presentation on the bowel/bladder issues. Nothing new their either! And a discussion of recreational activities for kids with SB. That was cool to hear about different things that are available in our area.

But my favourite part of the day was talking to other families. The day was geared toward kids with children 3 and under. I think there were 2 three year olds, 1 two year old, Kingsley, a 9 month old and a 6 month old. I feel like I'm missing someone here.... Maybe not. They had two families, one who we adore who has a son a year older than Rachel and the other who have a 15 year old son named Eric. Meeting Eric and his family was amazing. I imagine it would be the local equivalent of meeting Aaron Fotheringham. Eric is a wheelchair basketball superstar and he also plays sledge hockey. He and his parents were just so... reassuring. I sat there listening to them and thinking: THAT is the kind of family I want to be! They were just awesome.

We also had the chance to meet and talk to the other families there and a representative from the SBHAO. All of our kids were pretty different, but all definite rockstars. All in all, a very good day. I am really hoping we can do things like this more often!

Saturday, October 1, 2011

Awareness Month Deja Vu

Hello, welcome to October! Otherwise known as Spina Bifida Awareness month for the USA. We live in Canada and ours is in June, so I posted about it then. Instead of repeating, I'm going to repost. You can say that is lazy or you can say that I was so brilliant the first time that there is no topping it. ;)

I'll pretend you're agreeing with the second option.

I like to let people know what living with SB is really like. Not just the bad stuff, not just the good stuff. I don't want to gloss over anything because it's ugly and I also don't want to make it seem like it's horrible because mostly things are just pretty awesome.

Things weren't always so awesome though. Here is what it feels like to get the diagnosis for your baby: http://thelittlekingsley.blogspot.com/2009/09/diagnosis.html  In a nutshell, it's horrible.

And then he's born and the whole world becomes full of rainbows and sunshine! http://thelittlekingsley.blogspot.com/2010/01/hes-here.html


The rainbows fade with the lovely drugs, unfortunately. The post-birth hospital stay is one long rollercoaster, but the end is worth it because you get to go home and start your life. http://thelittlekingsley.blogspot.com/2010/02/kingsleys-video.html

And then you live.

You have good days http://thelittlekingsley.blogspot.com/2010/06/rockstar.html  and bad days http://thelittlekingsley.blogspot.com/2010/06/stop-ride.html and sometimes even worse days http://thelittlekingsley.blogspot.com/2010/09/heavy.html


You go on vacation (imagine that!) http://thelittlekingsley.blogspot.com/2010/06/kingsleys-first-vaca.html Yikes http://thelittlekingsley.blogspot.com/2010/08/three-kids-three-days.html 

You live http://thelittlekingsley.blogspot.com/2010/10/living.html


Your other children continue to live http://thelittlekingsley.blogspot.com/2010/10/spidipida.html


You have blips http://thelittlekingsley.blogspot.com/2010/12/kingsleys-decompression-with-music.html

But when you look at your child, you still believe you are the luckiest person in the world, because they are yours http://thelittlekingsley.blogspot.com/2011/05/best-case-scenario.html


This is what it's really like to live with a child with SB http://thelittlekingsley.blogspot.com/2011/06/living-part-2.html






Tuesday, September 13, 2011

The Green Monster

I have been doing a lot of thinking over the last month, a lot of reflection on certain behaviours I find myself doing and wondering why I'm acting so oddly. Some things are pretty obvious, some I'm embarrassed to admit. It turns out, I have a big bubble that I live in over here. It's part denial, part survival. I remember talking to a social worker about this back when Kingsley was first born and she said it's not that I'm pulling a bag over my head, it's that I'm recognizing that I don't need to put energy into certain things because I'm saving up for bigger things. I will just say she's right. ;)

So... what am I talking about, right?  Well, I'm avoiding things. I'm avoiding pregnant women, birth announcements, baby boys, and little boys in general.  I'm also avoiding one year olds, pretty much across the board. One year olds who have just turned one and are toddling around without a care in the world. One year olds who are pushing two like Kingsley and have struggles like Kingsley and who are now all starting to get up on their feet.  I'm avoiding other kids with SB, my blog world, and any general reminder that the life we have is not perfectly normal.

I don't know why I'm doing it. In 2 days it's the anniversary of our D-Day and I'm so far away from that day, it feels like another life in some ways. Kingsley is doing awesome. I have no worries about him regressing or needing another surgery anytime soon. He's happy, he's healthy, he's moving forward. Great things are happening for him! Tomorrow, we're going for his first wheelchair consult and I'm really, truly excited about it.

I think what it comes down to is that ugly green monster: envy. It jumps out and catches me off guard at the most unexpected times. The way babies stand up and bounce on your lap or the way they stuff food in their mouths like they're starved. The way they babble and talk and toss out words, so effortlessly. The way they race around getting into toys and destroying your house. The way so many of Kingsley's little SB buddies are now up - whether standing or walking on their own or with help - they're up.

I am happy for my friends who keep having boring pregnancies and all kinds of labours and have kids who drive them mad with their endless talking and running, and I am overjoyed for those little ones out there defying the odds and slowly, slowly making their first baby steps. But I also want it for myself, for Kingsley. And since it's just not in the cards, I just can't think about it that much.

So, I don't.

I just avoid situations where I have to think about it. I make up excuses and tell myself how I'm too busy to check in with anyone, too busy for playdates, too busy to catch up on blogs. Instead, I watch Kingsley make his little gains at his own little pace and I celebrate them as if he's meeting every milestone right on track. It's very one-sided of me, I know this. It feels rather selfish. I'll get over it soon enough, but for now, I'll just go back to my bubble where I don't have to think about what Kingsley isn't doing and just focus on what the kids are going to wear for their fall pictures or for Halloween, all the new gear Kingsley is going to be getting in the next few months, playgroups, swimming lessons, and all of the regular, boring life stuff that I love so much.

go away smelly green monster

Friday, September 2, 2011

Just Like Hallmark...

Well, I'm honestly not dwelling on it, but yesterday was two years since I sat in my midwife's office and watched her circle the 1:5 SPINA BIFIDA over and over as she reassured me that it was going to be just fine. Two years since I sat sobbing in my car, scaring poor Jeff when he answered the phone and I could hardly speak the words. Two years since I sat there knowing, as only a mother can, that my little baby was a boy and that this really was going to be happening to us. It's a very real memory for me and I can feel the pain as real as that day, but I don't have the ache anymore like I did then. I know this story has a happy ending, you see.

Anyway, another SB mama passed this on to me a few days ago and I finally got around to watching it which is what made me actually think about yesterday's date and where I was two years ago.  There really is a song for every occasion, isn't there?  I wish all parents who have those anniversary dates have endings like this and like ours. Not all of them do though and that is something that has become more real to me this year.

Grab a tissue first.

http://www.youtube.com/watch?v=DJOSMB0QhFY&feature=share

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

Thursday, May 26, 2011

Best Case Scenario

I have an ugly confession.

On the SB forums, like any other support forum, when someone new joins and announces that their baby was just diagnosed and asks what to expect, what do our kids do, what are they capable of, are they defying the odds? I freeze. I read the other responses. Then I type. Delete. Type. Delete. And finally describe Kingsley as a newborn.

I remember perfectly how scary that diagnosis is. I remember reading about other kids. I remember zeroing in on any kid who had a defect around where Kingsley's was. Jeff and I would read them over, pick them apart, compare and contrast: Well, that kid is where Kingsley's is and he can walk. That one has AFO's, that one doesn't. That kid has had FOUR shunt revisions!! Holy, that one has had a whole bunch of surgeries. That kid you can't even tell she has SB, what's her level?  All we wanted was reassurance that what everyone was telling us was true: the doctors who diagnose give you the WORST CASE SCENARIO. Your child will be a rockstar.

There are so many examples of children with SB defying the odds, karate chopping SB in the teeth, doing all of the things 'they' said they'd never do or wouldn't be able to do, accomplishing things they'd never achieve, meeting milestones right on track, despite the dreaded predictions otherwise. Take that, spina bifida!

Kingsley doesn't exactly do that. Kingsley is one of the kids that would've made me dissolve in tears for days if I had read about him when I was pregnant. That one is S1 but functions at L1!! He's getting a wheelchair and has had FOUR surgeries already!! *sob* He can't even eat normal food yet!  The end of the world! The worst case scenario come true! And that's why I hesitate when new moms ask for reassurance. They want to hear about the other kids, not my boy. I know this and I don't blame them in the slightest.

The thing is, it's hard to describe in words how incredible Kingsley is. It's hard to understand how he completes our family, how he lights up a room with his smile, how he smells like heaven when he wakes up in the morning, and how he can charm the pants off anyone he meets (What's that Kingsley? You want a new house? Sure! I'll build you one! ;)).  His laugh is electric. The faces he makes can entertain me for hours. He's brilliant, pure and simple, you can see his mind working and figuring things out whenever he plays. He's such a happy, good natured, adorable kid. And the wheels he rides are pretty cool.



The level of functioning, the number of surgeries... they really don't matter. People say it over and over and over, because it's true. When it's your child that you are holding, it doesn't matter. With Kingsley, it's the way his lips move when he says Mumma, the way his arms wrap so tightly around my neck, the sparkle in his eye when he sees me walk in the room, the way he's entertained by his sisters, the way he says Dadda? Dadda? when he hears the garage door, the way he pounds on his toy piano, the way he dances when he hears a good song, the way his lips pucker when he's trying really hard to do something, the softness of his skin, the way he throws his head back when he laughs... those are the things that matter. Those are the things that make me feel every day like we got the Best Case Scenario. So, take that Spina Bifida.

Fresh eyes for you, Kristin.

Thursday, May 12, 2011

Come Out, Come Out, Wherever You Are...

When I was in highschool my friend and I saw a car with duct tape holding the door on. We thought it was hilarious. After that, we started looking for the junkiest cars we could possibly spot. It was amazing that once we started looking for them, they seemed to appear at every turn. Bumpers held on with string, windows made of plastic wrap, masking tape over holes in the body... they were everywhere.


When I got pregnant with Rachel, the same thing happened. Suddenly, everywhere I looked there were women with big baby bellies. Babies in strollers, in carriers, in arms, just all over the place. One day, I didn't know a single pregnant woman or newborn. The next day, I was surrounded by them and couldn't turn around without bumping into one.


I'm starting to see people with SB. Or I think I am anyway. They're popping out of the woodwork and it's like a giant tease from the universe. The other day I was out in the front yard with the girls and my mom. Halfway down the street I saw a girl who was about 5 or 6 years old, walking behind a wheelchair that she was pushing. She walked like a little girl with SB would (and I cannot remember the technical explanation - one of the nerves near the bottom of the spine goes to somewhere in the glutes-ish area and thus makes it hard to tuck the bum in if you don't have that firing... or something like that). ON MY OWN STREET! Could this be right? I pointed her out to my mom who nodded in agreement. No cars on the street, so was she visiting? Did she live there? How come no one had ever mentioned that there was someone ON MY STREET living with SB? She disappeared when I had my back turned and I haven't seen her again since.

The next day I saw a 20-something year old guy in a restaurant that made me look twice. He was walking, but there was something awkward about his walk that made me stare. Until I realized that was really rude.

I've seen kids with AFO's in wheelchairs that I want to stop in the middle of a park and ask what their story was. At the grocery store, I passed a little boy about 4 years old in a wheelchair and I was tempted to ask his mom why he used one and how old he was when he got it.


We need a pin or something. I need to be able to identify other members of this exclusive club so that I don't look like the rude staring lady who really just desperately wants to find my team members.

The thing is, I know someone somewhere knows who we all are. I know that confidentiality prevents them from passing the list over to me. I know that if they wanted to be open to new families joining the club, they'd allow their information to be passed out. So, do I assume that they don't want to meet me? Or that there's been a glitch somewhere and there are other people sneaking quick peeks at Kingsley's AFO's and wondering how to pose the question?


Remember that scene in the Neverending Story, right at the end when the girl in the book with the necklace on her forehead tells the boy reading the book to do something and he's so confused by how she knows that he's reading it?  I know that there are other SB folk from around here reading this! Yeah, you! For all I know I'm passing you and your babies and bellies on the street and having no clue. It's time to come out and play. Come find us.

I make cupcakes. ;)


No, really. I do make really good cupcakes.
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