Showing posts with label struggling. Show all posts
Showing posts with label struggling. Show all posts

Tuesday, April 1, 2014

Sunshine

I feel badly that I posted a mopey post and then did not come back and blog for over a month. No worries, things are a-okay. It ended up being a good reminder for me about what happens to my head when I don't look after myself: after a week of the flu, not eating well, not working out, I could feel those ugly thoughts creeping up. That's about the only time they happen now.

Anyway, a few days after that I was back to normal and we haven't looked back. Everything and nothing have happened since then. I had my birthday, Rachel had her birthday. We had the longest, coldest, snowiest winter in decades. King had an MRI today to check everything over and see if his scoliosis is related to a tethered cord and if something needs to be done there. We've been doing more school planning, which has been great. Basically, we are all just doing really well. 

Who can be grouchy in the springtime sunshine?? 

Thursday, February 20, 2014

Through the Looking Glass

Every now and again I will look at Kingsley and instead of seeing my charming, lovely little boy, I will see someone else. I'll see his diagnoses. I will see how 'society' sees him. I will see both the Kid with Spina Bifida and the Spina Bifida Kid. I'll see his future surgeries, his equipment, his therapy and procedures, his struggles and his challenges. I'll see pity and sympathy.

I won't see Kingsley at all.

It doesn't happen often, it really doesn't. I don't have time to dwell on these things, I don't have the energy. I know there is no point in wishing things were different, no point wondering what could've been done differently. I know. 

But every now and then, whether it's something I've read or something someone has said or in the way someone looks at him, I will suddenly see Kingsley as someone who doesn't know Kingsley. And it crushes me. 

Friday, October 11, 2013

Counting Down

I love count downs. Count downs to holidays. Count downs to Christmas. Count downs on the radio. Turns out, though, I hate count downs to surgery.

Kingsley's surgeries so far have been like this:

#1, back repair
Doctor: Congratulations, it's a son. I'm going to prep him for surgery now.

#2, shunt
Doctor: Remember that shunt I said he'll likely need? He needs it. I'm going to prep him for surgery now.

#3, decompression
Nurse: the doctor just looked at the images. He needs surgery. You've got less than a week to get things organized.

#4, detethering
Nurse: the doctor just looked at the images. He  needs surgery. You've got less than a week to get things organized.

#5, tendon release
Doctor: when do you want it? Five months? OK, see you in October.

Five months is far too long to sit around thinking about the worst things that could happen and all the ways that this could go badly. The last month has been the worst. Between Kingsley's endless stream of doctors appointments regarding his bowel fun, there has been the consult for surgery, pre-admit appointments, a urodynamics (which he did like a boss), OT appointments, PT appointments, SLP consults, preschool discussions, and finally, a tour of the hospital to desensitize Kingsley to what was going to be happening. It's been a lot to take in and I'm just drained from it all. Spina bifida's impact on our lives ebbs and flows, and lately it's flowing over my head.


I think the hardest part of all of this has been not knowing what will happen after the surgery. Word on the street is that it could go one extreme way or the other: either he will carry on as normal, but with casts or our lives will go into a dead stop for 4-6 weeks while he has the casts on. His PT does not think we will be able to modify his wheelchair to accommodate casts and so will have to use a loaner from the centre which I haven't seen, but has been described as a beastly thing. If he can't get around in the wheelchair, can't crawl, can't sit unsupported, and can't go in his stander, the poor kid will be immobile. We have requested a scooter board be made for him, but it's not ready yet. Another huge issue is how he's going to fit in a carseat and where his legs will go while he's in one. It's another thing we won't be able to work out until he has the casts on him. And of course, how heavy are these casts going to be??  Even if I get him in a carseat, will this modified wheelchair fit in our van without breaking my back?

I am looking forward to this being over. Not only because I'm beginning to dread the casts, but because I'm excited for when the casts are off and he is able to do more. I can barely get his AFO on his one foot now and hate putting him in his stander because I can't get his legs straight enough and I'm constantly worrying if I'm doing more harm than good.

And so, we count down the last few free days before surgery. It's a nice long 4-day weekend that we have to visit with family and just hang out. Tomorrow, we are going to a wedding, Sunday is Thanksgiving, and Monday we will spend just enjoying our time together. Tuesday at 8am, his surgery begins. Counting down...

Saturday, July 27, 2013

Going Nowhere Fast

*** This is a poop post. The vast majority of you will want to just skip on over it. It's okay. Come back soon, I'll have something less gross to talk about, like swimming or my nieces visiting or anything that isn't brown. For those of you walking this walk, carry on. ;)

seriously, mom, this is so gross

So, the ongoing frustration continues. After being referred to the new GI doctor, I had high hopes about finally coming up with some great plan to deal with bowel business. I spoke with his nurse practitioner who said she wanted us to do a full clean out before the next step. 

Let me tell you, we've done clean outs before, but never to this degree. I wanted to vom on an hourly basis. Once again, both King and I were traumatized by poop. I will spare you the gory details, but Rachel and Cordelia are more than willing to describe the puddles. 

Puddles, people. 

I now have a toothbrush reserved specifically for the task of scrubbing itty bitty crevices in King's wheelchair. 

Anyway, once that was done, we found out the answers we wanted (there are no little caves or cavities made in his colon anywhere created from constipation and holding stale poop for endless amounts of time. yay.) and Kinger was all cleaned out. And then some. I called up the nurse, eager to hear what the next steps would be. 

Give him fibre so he's not constipated. (he's not constipated)
Give him other fibre so his poop is solid (his poop is solid)
[insert review of King's diagnosis and what neurogenic bowel means for him. for the second time since apparently it wasn't written down the first time. reminder that we want surgery. in the meantime, we want something else to do so he's not going all day, every day]
Try to train his bowel to go at the same time every day (November. Every night since November)
Have him sit on the potty multiple times a day (haaaahahahahahahaha!!! 30 min/day, multiple times a day?? good one)
OK, have him sit on the potty in the morning before breakfast, instead of at night (sigh. really? ok, we'll try)
Ummm.... (ummm??)
Maybe when his lower ab muscles are stronger he'll learn to push. (*crickets* uh... yeah and when his leg muscles are stronger he'll learn to walk, right? kthxbai)

And that's where I hung up and put my head down on my kitchen counter and King rolled up and asked me if I was sad. Oh, buddy. 

I don't know where we go with this. No one wants to talk about enema's, no one has any other suggestions. No one other than his urologist and I seem at all concerned that the train doesn't stop. I'm frustrated. 

A couple of interesting things DID come out of this experience though. The first was that just before we did the clean out, King did get constipated. Nothing changed - his diet, his liquid intake, his liquid output, his health, his activity level, his medicine - other than this. It's just one of those odd things that happened, but it's never happened before without some ominous reason.

The other was that Kingsley is acutely aware of every time he poops, toots or has a stomach gurgle. This is also new. He gets a look of absolute panic whenever it happens also, which makes me sad. I'm glad that he's aware of it, so that he can be changed quickly. I am not glad that he is so bothered by it. 

 are you STILL talking about this??

That's it, I'm all done. We have been having a great summer other than this nasty bit. Hopefully, it'll be our only blip! 



Sunday, June 2, 2013

This is Where the Sidewalk Ends

Allow me a moment to whine. 

I have a whole other post planned about how there isn't all that much to do around here when you're rolling, but one of the biggest... I don't know what to call it... Struggles? Frustrations? Disappointments? It's my other backyard. 


Across the street from us is a water drain off thing which is basically a pond, a beautiful, peaceful, grassy, space with wildlife and wildflowers. There's also a ravine and a few pathways and so much to explore. Unless you are using a wheelchair. <insert sad face>

It's been a rough couple of months watching it all blossom from my window or front porch. I desperately want to take King over there to explore. The dilemma is that I can just now walk on uneven surfaces and I can just now start to carry his weight, but I cannot do both at the same time, not by a long shot. 


Today, we had a perfect spring morning, Jeff was home and I just grabbed Cordelia and left the house. It was awesome. We saw new little geese families, snails, singing birds taking baths, hawks soaring. We picked wild flowers and listened to the wind and the water lapping. 

It was so bittersweet. 


Usually, the restrictions that a wheelchair places on us don't bother me all that much. Today, they did. 

Friday, January 4, 2013

Dear YMCA

Dear YMCA,

I came into your new building today to get a family membership. It's a beautiful place, bright, airy, and so many things to do. I have brought my children here before to use the library and my girls come here swimming with their Grandma. It's a great place, from what I've seen.

I approached the desk and asked to speak to someone about starting a family membership. A man gave me a little slip of paper and explained all of the cost breakdowns, payment options, and payment schedules. There were large sheets of paper with all of the activities going on through the day, outlining all of the drop-in programs. I asked about the child minding, the hours it was opened, the age limits for the kids. Almost as a rhetorical question, I also asked if it was accessible.

This is where things went wrong. I had heard about these moments, I had worried about these moments. I have avidly avoided these moments for three years. My son uses a wheelchair. He can't walk, but he gets around on wheels just fine. I know that there will be moments in his life where this will cause a problem. We don't go to the indoor playgrounds. We don't go to a lot of parks. We haven't signed him up for the same preschool my older girls went to. I have waited, knowing that there is a lifetime of these moments ahead of us, and chosen instead to just avoid them for now. I will save my fight for when it really matters.

The problem, YMCA, was that I didn't know this was going to be one of those moments. You are the YMCA, after all. You are not an Workout Club, you are not a Fitness Place - places I have sheepishly avoided in another attempt to avoid this moment. Your whole mission is to be inclusive and accessible, to everyone. So, when I casually tossed out the question about whether your playroom was accessible I was not expecting the frozen look of uncertainty on your employees face. I did not expect that he would rush back to consult behind doors with a manager. I did not expect to be told: "It gets busy."

I should have had my game face on, but it seemed my armour was in the van out in the parking lot. Instead, I stood there with an equally frozen look of uncertainty as I listened to him tell me that there were drop in art programs I could do with my son, that they had an accessible bathroom, and that there was a wheelchair he could use to wheel into the pool (though, that ramp leads into the deep end and my son is, of course, not yet three, but I let that one slide). I was not interested in any of this information. I don't want a drop-in arts class for my son and I to do together, I want to work out on my own while he plays somewhere else. A couple of short hours each week where I can sweat, be by myself, and destress.

Because, YMCA, I have stress.

What is a caught-off-guard, stressed-out Mama to do when told that the drop-in playroom "gets busy"? I tried to squash the fragile parent and summon my inner warrior, but all that came out was: "I don't understand." He repeated: "It gets busy. And crowded." I said again, "Ok... but I don't understand."

I didn't and still don't understand what was being said to me. There are so many ways to interpret the message I was receiving, I wanted to make sure I wasn't jumping to conclusions. Is the room crowded in general, and so there is only room for tiny children to sneak past each other, to squeeze between one activity and another? "He's barely three," I said, "He's small. His chair is small." He shrugged and looked like he desperately wanted out of the conversation, "I don't know if the family membership will be good. Maybe use a guess pass instead. Then you'll see."

Was your employee trying to subtly tell me that the YMCA is not as inclusive as it was supposed to be? Or that they just didn't want my child clogging the room with something as uncouth as a wheelchair? Was he afraid my child wouldn't be able to participate?

He didn't ask any other questions. He didn't ask if my son was independent (he is), if he would need special support (he won't), or even if I wanted to see the playroom to decide for myself. Instead, your employee stepped back from the desk and averted his eyes. He repeated again that we should do a guest pass one day instead of getting a family membership.

I'm sorry for leaving so abruptly. I'm sorry for not clarifying exactly just what was being said and unsaid. The trouble is, it's been over three years since I was told that my son was not welcome.  It's been mumbled here and there since then, but this was the first time since then that I felt like it was being said to my face.

YMCA, I think something was lost in translation today. I don't know what message your employer had been told to pass on instead of the message that I received. I don't know if this conversation was supposed to be in my best interest or in yours. I still don't even know if your playroom is accessible. I will find out the answers. I will be more prepared and listen with my head instead of my tender, stitched-up heart. I will find out how to make this work for both of us. I will decide if this really is a battlefield or just something we need to talk about.

Sincerely,
His Mom


P.S. Don't disappoint me twice. I will take you down.

**UPDATE
P.P.S. Here's the outcome

Friday, September 14, 2012

September Limbo

Yep, it's September, the month of doom around here. The month where Kingsley freaks us out and we get bad news. It's kind of getting creepy, if I'm being honest. September 1st hit and I was reminded that my nieces birthday was the next day. It hit me like a ton of bricks. Pre-Diagnosis Day. The day we got the results of the blood test that said something was wrong. I stopped my brain from going down there. It's been three years.

September curse is in my head. So what if September 2009 was diagnosis month, September 2010 was syrinx-not-gonna-walk month, September 2011 was deja-vu-scare-month? Don't get upset about stuff that wasn't happening.

The days ticked by.  The curse loomed.

OK, I'll cut to the chase. Strange things are happening and I'm about 5 minutes from rushing him to the ER at any given point. I don't know if something is going on with his shunt or if I'm over-thinking. Either way, he's not himself and something really is going on.

Right now I'm in wait-and-see mode (which I now embrace, for those of you on the early end of this SB journey ;)). He's been grouchier and grouchier, eating less and less since the girls went to school. I have been excusing it as 'he's two' and 'he misses his sisters' and 'his entire world just flipped'.  We've also had people in our house doing renovations all week, so it's been chaos. Totally justifiable to be grouchy.

Then he threw up (because he was crying and upset).

Then he threw up, again (for no apparent reason).

So, what's a shunt-fearing mama to do? I called the paediatrician and the neuro nurse.

Kingsley has had two days of total lethargy. He eats very little and didn't drink for nearly 24 hours (he is ok with that now). He doesn't have a fever, isn't fussy like he's in pain, won't tell me something hurts, no sign of UTI, ear infection, his eyes track normally and open fully (when he can keep them open), and his nose is not running at all. Just wants to sleep or snuggle all day.

I'm giving him 18 more hours and then we're trucking it to the ER if he doesn't get worse or better.

Limbo is a blissful place to be, in a way. Shunt malfunction is not fun. That means surgery, a couple days in the hospital and my poor kids having even more trouble adjusting to September this year. There's always the chance that this is related to Chiari in some way I don't know about, which is far worse. Then there's a chance that he'll wake up ravenous and ready to play. Or with a cold. Either way, we'll get through it like we always do.

Tomorrow is the true Diagnosis Day anniversary, which is still far and away the worst day of my entire life. Whatever this September brings, we can handle it.

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.



Thursday, January 26, 2012

Moments

I still have them.

Those moments where your heart freezes when you find yourself faced with a random never will because of SB.

At first, when we got the diagnosis, they were big ones. Like: I won't get to hold him right after he's born. I will never get that family shot of the three of us when he's seconds old. I won't get to lie awake holding him on his first night. I won't get to smell him before they clean him (which is kind of gross sounding unless you've smelled a seconds-old baby and then you know that little bit of heaven I'm talking about).

We got through those moments, those nevers and it was just fine.

Eventually, I was even able to start spotting the wills - those tiny silver linings that sparkle or blind you with their brilliance every so often - things that we get to do now because of SB. The people we've met, the places we've gone, the moments that would've slipped past without notice 'before'.

But every now and again, a stupid little never pops out of nowhere.

Today, I was attempting to do Zumba on the Wii so that no one except Kingsley and Rachel had to be subjected to the awkwardness. There was a buff, extremely talented, animated guy doing the dance and out of nowhere I thought: Kingsley will never dance like this.

*squeeze*

Then reality tapped me on the shoulder in the form of my flailing reflection on the TV and the vague memory of what Jeff looks like when he dances. Yeah... Kingsley will never dance like that guy. That was a given, SB or not.

Moment over.

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

Wednesday, August 31, 2011

September

Tomorrow is September 1. We've had such a great summer and Kingsley is doing fabulous, but here is when the voice in the back of my head starts leaning forward and whispering how cruel September is to us.

Last year, we were realizing that Kingsley was not moving the way he was, the way he should have been. We fought to be heard and it was the beginning of a long, challenging winter.


Two years ago (tomorrow), the words spina bifida were first said to us. Although those days are a long distant, painful but faded memory, they are a reminder of how those two little words love to blindside you.


BUT!

I will not get ahead of myself. I will not let the past haunt the present. As of right now, September is going to be just fine.


Bring on the fall. We are getting ready.

Tuesday, April 26, 2011

How Old is He?

"How old is your boy?"

"Fifteen months."

"Fifteen months. Right..."

There's a pause. I wait, wondering if he's figured out how he's going to ask it.

"He's a cutie. Such big eyes!"

"Thanks." I smile, finish putting my boots on and pick up Kingsley who is sitting propped against a wall by the doorway.

This is not the first time this other Dad at preschool drop off has asked how old Kingsley is. He has a 14 month old who squirms to get out of his arms, toddles up and down the hallway, and runs crying from strange adults she bumps into. We see him twice a week and he's begun to notice that Kingsley doesn't walk.

The first time he noticed and asked how old he was, he sort of nodded in that empathetic way and I could tell he was thinking: late walker. The last few weeks, I've noticed him noticing more. Like how Kingsley doesn't try to walk, doesn't stand, doesn't sit independently even. How I carry him everywhere and rarely put him down. And how Kingsley is just fine with that. I can see the wheels turning and I know he can't figure it out.

He's a very nice man and his questions don't bother me at all, nor does the way he stares and puzzles over Kingsley's stationary state of being. He's not rude about it and I know he's trying to find the right way to ask without being impolite. I should just tell him, but I'm also still trying to find the right way to say it. Still.

I understand that Kingsley is not going to walk, not the way I imagined he would. Almost all of the time, I am okay with this. But that tiny little part of me that isn't okay, that is a teenie bit sad about wheels, that can't allow myself to think more than a year into the future - that part of me is having trouble blurting it out: My son has spina bifida. He isn't going to walk.


At 15 months old, Kingsley looks like any other toddler. He smiles and babbles and waves and plays shy. He accepts kisses from his sister and then pushes her away. He whines because he sees all the toys and wants to stay and play. He twists in my arms to have one last look as his sister runs off. If you look very, very closely you can see the faint line of a scar down the back of his head and neck, but hoods hid that all winter while it healed and only the woman who cuts his hair would notice it anymore. His legs don't work. That's hard to figure out, to pinpoint when you're just seeing him for short amounts of time.

My son has spina bifida. He isn't going to walk, but he is going to amaze you.


I will find the words soon.

Monday, February 21, 2011

Murderball

I got something this weekend. Something that is one part smack on the face, one part big hug. That something is: perspective.

There is this fantastic documentary that came out in 2005 called Murderball. I saw it years ago after it was nominated for an Oscar and loved it then. I rented it again this weekend because, well, it's about guys in wheelchairs.

I just lost you, right? Documentary + Wheelchairs = wahn wahn waaaaahn.  No way, Jose. It's so good. Not at all what you're thinking. No tears, no sap, no feel-good-ness. I'm not really sure how to sell this to you, other than to say that you've just got to trust me on this one: it's a great movie. Have a look at the trailer http://www.youtube.com/watch?v=_kaT5dDiISw  Jeff watched it with me and loved it as well. In fact, it was rated as the #1 sports movie to date. Yup. Sports movie.

Murderball is the original name for wheelchair rugby, which is a game for quadriplegics, meaning that these guys have impairment in all four limbs, unlike Kingsley who just has some impairment in two limbs.  None of the guys featured in the documentary were born wheelchair-bound, most had either contracted a disease that put them in a chair or had been in accidents (quite the Don't Drink and Drive ad).

There was one part in the movie where they featured a guy who broke his neck more recently. He's in rehab after his accident when he's introduced to one of the murderball players and the sport. He's still new to the chair, he's still a bit vulnerable. He still asks questions like, "Would I get kicked off the team if I recovered and started walking again?" When he goes home and his mom is excitedly showing him all of the accessible changes she's made to his living space, he asks for a moment because as awesome as it is, 'he's in a wheelchair and that really sucks.'  I was feeling this guy.

However, here is where the perspective came in. These guys aren't anything like Kingsley. For one, their level of injury is up in the cervical area for the most part, a whole huge thoracic section above King.  However, to be all woah-is-them because they're so much more impaired (and even writing that!) would be ridiculous. They are world-class, Olympic athletes. Also, because they weren't born this way, they had to accept that they once walked and now will not. In a lot of ways, they are more like me than Kingsley. It's not Kingsley that would have to adjust to being on wheels, it's me that has to adjust to that reality instead.  And if these guys can get over that and become Olympians, then perhaps it's time that I did as well. It obviously doesn't happen overnight, but at some point the choice has to be made to either pull the covers over your head and wallow, or get over it.

Time to see the silver lining, because yes, there is one.  Without the chair, these men would not have met. They would not have become Olympians. OLYMPIANS. For real! Talk about making lemonade out of lemons. Obviously, I have no idea where Kingsley will end up when he's older. For me though, without SB entering our lives like this... well, I'd be back at work instead of loving up all three of my kids every day, all day. I wouldn't have met this whole world of families that are going through the same thing as us, which would be sad because so many of them are awesome in ways that have nothing to do with SB! I wouldn't be blogging ;) I wouldn't be looking at/planning for an awesome new house. I wouldn't have developed a new appreciation for normal days where nothing and everything happens. My life would've just gone on, la-dee-da, without being forced to stop and really re-evaluate what is going on and what really matters.  Silver linings abound!

Saturday, February 12, 2011

Overwhelmed

I have said before that SB is such a small part of our lives. Something that just is, but that we don't often even think about.

That's not so true anymore.

Lately, it feels like my whole life revolves around those two words. Since November (or maybe September?) it is always there, the huge ugly beast that I can't escape. In January alone, Kingsley had 10 appointments. February had surgery, 7 days in the hospital and 6 appointments with a couple more to be booked. I am housebound more often than not since Kingsley is supposed to be horizontal as much as possible.  Every diaper change has become exhausting: watching his legs, holding his feet, checking his incision.  I HATE THINKING ABOUT IT. And we have months to go of waiting and watching and checking to see if things improve. Or get worse again. 

In between all of that fun stuff, I spend my time browsing houses on mls, trying to decide between buying and renovating versus custom building an accessible home for us.

And now SB is all over the news, with words like 'crippling' and 'suffering' and 'severely disabled'. 

It's absolutely crazy making.

I know that one day I will look back on this time the same way I do any rocky time. It will feel like a blip in the big picture. It will help us get to where we need to be. There will be calm and normal days again. There will be pajama days for reasons that don't involve airing out incisions and appointments that don't require $10.50 for parking.  I will get a babysitter so that I can do something fun.

Apparently, it's supposed to be above freezing tomorrow and the waist deep snow is going to start melting.

Spring is coming.

Maybe there will be tulips. ;)

Saturday, January 29, 2011

Detethering

Yep, there it is. Surgery number four is booked for Wednesday.

I talked to his nurse yesterday about the results of the MRI. What I wanted to hear was that there was a lot of space and free lowing fluid through the decompression site and a reduction in the size of the syrinx and that the tethered cord was now responsible for the loss of functioning. A quick snip and all would be restored. That may have been a pipe dream, I don't know. Sure wasn't what the case was. There is some space that has been opened up at the decompression site, not a ton, but more than there was the day after surgery. Enough that they are not interested in going back in right now to open it up more. The syrinx has not shrunk. If anything, it has grown. That was a huge pill to swallow.

Today I talked to his neurosurgeon and the consensus is to go in and do a detethering. I've been reading up on tethered cords and it's starting to make more sense to me now. From what I've read, a tethered cord can cause fluid build up along the spinal cord.  Hopefully, this is the cause and once fixed, the syrinx will shrink or at the very least, the detethering restores some functioning.

The average spinal cord dangles down and ends somewhere between L2 and L3, depending on how old you are. Because of the Chiari, Kingsley's brain hangs down to C3 in the top of his spine and ends down... I forget where. I'm looking at the MRI image from last time and it looks like she has it circled in the high sacral area, about where his defect was when he was born. That's about 3-4 vertebrae lower than it should be and it stuck there by the scar tissue. From what I understand, this tethering stretches the spinal cord like an elastic. The difference between it and an elastic is that it's not supposed to be stretching, it's supposed to be dangling and this stretching causes damage to it.

The surgery will be 3-4 hours long (shorter than the decompression) and will involve the dr going in near the original scar from when they closed his back. His scar will now be a bit longer/higher than before, which is too bad. Currently, it's hidden underneath his diaper. When he's swimming or topless for some reason, you can't see it. I liked that, for his sake. Although, really, we're sort of beyond the point of hiding his scars anymore after the last surgery.

He'll be in the hospital for about a week, on his tummy for the first few days. His dr says he will recover faster than after the closure because he's older now. The other good news (in my opinion!) is that the baby/kids wing of the hospital has been moved and the nightmare we had last time with the noise and lights and people will be avoided because it's all private rooms! YAY!!

The only wrench in this plan is that Kingsley (and I) are currently sick. The girls have been sick all week and it knocked us out yesterday. He's got a low grade fever, he threw up twice and he's not sleeping well. I know, half of you automatically went: EEEK!! SHUNT!! ;) Thank goodness we got that MRI done or we'd be sitting in the ER right now. I'm quite relieved to have his first real 'sick day' without having the added panic of wondering about Billy (that's his shunt's name). I'm going to take him to the walk-in later today to rule out an ear infection so that he's on his road to health by pre-admit on Tuesday.

The surgery news really hit me hard yesterday. I knew it was coming, but I was still holding out for that miracle. Today, I'm in go-mode. I'm planning.  I scrubbed my house from top to almost-bottom (I wore myself out before the floors got done), I'm making meal plans, grocery lists, lining up babysitters, talking to Rachel and Cordelia about another week away from them.  Life is on hold again.

And just so I remember later to follow up - I read something last night about scoliosis and tethered cords. No one has ever mentioned it in regards to Kingsley, but he leans all the time to one side. I've been told it's not a hip-thing, possibly a neurological thing. I wonder now if it's related to the tethered cord. Or perhaps I should stop reading.

Tuesday, January 11, 2011

I'm Paranoid

My apologies for anyone who is going to have the Jonas Brothers in their head all day. You're in good company because it's what I have thought (and then sung) at least a hundred times in the last 24 hours. I don't even know what happened or if this is in my head or UGH! I guess paranoid is the only word that sums it up.

It stems from Kingsley losing functioning. I didn't see it. I know why I didn't see it, I know I wasn't the only one that didn't see it. I know we're all kicking ourselves wondering why we didn't catch this earlier or why we didn't even realize it until it had gone so far downhill. I also know that it would've been really hard to see something so subtle changing so minimally on a daily basis when you spend all day every day with Kingsley. I get it. And I also know that no matter when I had caught it, we would've ended up in the hospital with the same result. I know this.

But it still makes me ill to think about. I missed it. I didn't see my son losing his leg functioning. I don't even know when it happened.

I was talking to his OT the other day about it and we both said what we both knew - he was making SO MANY gains in other areas. We were so focused on what he could do, we didn't see what he wasn't doing. His fine motor, his communication, his social skills, his time on his tummy and moving around with his arms were all doing amazing! No sign of anything wrong.

Which brings me to my current paranoid state.

Kingsley is doing amazing. A. May. Zing. He's sitting up on his own!!  I sit him up and he just stays there (mostly), playing with toys, looking around. He even corrects his posture or catches himself from falling (although he still needs to work on this a bit).   He's never done this before. Even in the summer, before I missed whatever I missed, he wasn't sitting up this well. So awesome. And he's talking up a storm! He says MOM/MAMAMAMA and actually means ME. He says BUH-BYE and I swear he's saying HIYA. And in between hi and bye, he's got a whole lot of babbling and repeating sounds.  He's also right back to where he was pre-surgery with his tummy time and pushing around on his arms.  He's close to army crawling, I can feel it. He's eating more (alleluia!) and sleeping alright (don't get excited - still up about 3x, but at least he goes right back to sleep).  Things are going great.

Did you just hear that doom music play? Cue the Jonas Brothers again.

He's not moving his legs much. My mom asked me about it over Christmas and I was able to answer with a firm YES, he was still moving just as much as ever. Big kicks from the hip, all the time (I say kick, but really he's just lifting his legs from the hips, like doing a squat on his back). She hadn't seen him doing it that day because when he's sitting on a couch or being held, he doesn't do it as much and that's all the had been doing, but during diaper changes and lying on his back playing, it was there. Strong. When his PT was over during the holidays, he did it constantly, on cue, the whole time she was here.

Yesterday, we had clinic (which is noneventful for reasons I'll save for another day) and the developmental paediatrician had him on his back, asking about his leg movement and... he just lay there. It wasn't until she said, "Oh, there's what we're looking for!" and he kicked that I realized what was significant here. Not the fact that he kicked, but that he only kicked once.

This morning, I was getting him ready (cathed) and trying to get the girls dressed and all the usual morning insanity and the thought crossed my mind: I'll just prop the bottle here and get Cordelia dressed or this will take all morning... Nononononono.... Instead, I sat there while Cordelia raced around the house with a hairband around her waist (and nothing else) and watched Kingsley's legs.

I can't do it again. I can't do the hospital. I can't let them cut my baby's head open again. Once was bad enough - I didn't really know what to expect or what was happening. I didn't have time to think about what they were actually doing. If he has to go through it again, I don't even know how we'll do it.

Maybe it's a fluke. Maybe he's just tired. Maybe his diaper is too bulky. Maybe maybe maybe. Maybe it's a shunt problem.  Never thought I'd be praying for a shunt failure. Please give me something mundane and boring - give me teething, give me a UTI, an ear infection, a wicked diaper rash, but don't let this be what I'm afraid it might be.

His PT will be here in a half hour. Can we stay in this limbo of not knowing? Because if my paranoia is justified, I don't want to know.

Sunday, January 2, 2011

The Lucky Ones

Too often, I hear people using the phrase: It could be worse. I don't know if it's just the adult world, or the parenting world, or just the parents-of-kids-with-special-needs world, but I feel like I hear it all the time. You know how it goes -  you have a kid throwing up and someone says: "Well, it could be worse! It could be ALL of your kids throwing up!" or you hate your job and someone says: "It could be worse! You could be unemployed!" or, in my world: "It could be worse. SB is manageable. At least it's not xyz diagnosis."

The phrase annoys me. I feel like it diminishes someones pain or frustration. It sounds patronizing. Sometimes, situations are rough and that's okay to acknowledge. As someone sagely once told me: "Just because someone else has a broken leg doesn't mean your sprained ankle doesn't hurt like hell."  Which is exactly right. Just because there are things so much worse than SB, that does not mean that SB doesn't suck.  A lot. As does every other thing I feel like complaining about in any given moment.  ;)

And if I'm being honest, to me the phrase is also a bit painful. As if I can hear other mothers squeezing their own naturally-mobile children tight, thinking about Kingsley and saying it to themselves, just as I have done so often thinking about other special kids I have known. 'Worse' is always relative, isn't it? 

However, today, I have found myself thinking these thoughts with a heavy heart. I look at my three beautiful children. I look at Kingsley's scars. I think: It could be worse. It could be so much worse.  Because, as I have noted previously a scar does not form on the dying. And the very fact that I can go upstairs and hug all three of my children if I want to reminds me that things could indeed be worse. 

There is a new angel in heaven today. A sweet baby girl, who was only with us for ten days. Tonight, she is up there with her grandpa instead of with her parents and her sister and all of the family that loves her so much, despite barely having any time to get to know her. She was born with Trisomy 18, so her story was destined to end before it should have, no matter what anyone did. Somehow, that doesn't make it any less sad. Any less unfair. Any less wrong. Any less devastating for her parents. 

It has made me realize that we are the lucky ones. All of us that have our sweet little children here on earth with us. No matter the challenges we have to face for them, no matter what fights we find ourselves fighting for them, no matter how much heartache we feel on their behalf.  We are the lucky ones. We get to feel that pain, we get to fight that fight, we get to face those challenges. For however long we are blessed to care for our little people, we are so lucky to be able to do that. To know them. To watch them sleep. To kiss their little faces until their sticky hands push us away and they complain that they can't see the TV or that we're making them mess up their painting. We are lucky for whatever moments we have with our children.  

No matter how many scars zigzag across his little body, no matter what level he functions at, no matter how many times he wakes me up at night, I am lucky. I don't ever want to forget that. 



Tuesday, November 23, 2010

Tic Toc, Tic Toc...

Tomorrow is the day. Twelve hours from now, Kingsley will be in surgery.

Yesterday, he had a modified barium swallow, which of course he rocked. Today was his pre-admit appointment, where I got all of my questions answered. There's nothing left to do, but get 'er done.

Jeff tried to give him a mohawk tonight. He screamed and flailed and Jeff chickened out. Probably for the best. Can't trust a bald barber! Har har.

I don't know what else to say. I'm feeling pretty sick about the whole thing. I need to pack and go to bed.

Tuesday, November 16, 2010

Too Much! Too Much!!

There is a Mommy Meltdown in my future.

This week went from slow and mundane, to insane in one phone call yesterday. We got the MRI date - Thursday! As in, 2 days from today.  I guess when you're a neurosurgeon, you get an MRI when you want to get an MRI! Today Kingsley had a pre-admit appointment because he has to be sedated. Two hours sitting around in an examination room trying to entertain a 10 month old is not so much fun, but he passed his tests and he'll be getting his MRI in 2 days.

That is, if he can survive the night. He isn't allowed to eat or drink after 2:30am, which is about 3 feedings for Kingsley and 5 hours of sleep that will be replaced with screaming and crying and painful "MOMMY, why are you denying me???" daggers shot in my bleary eyed direction. Oh, my poor boy.

This may seem great, except I feel really overwhelmed. Discussing drug risks, procedures, outcomes and expectations... it's all so reminiscent of a year ago. This is his first 'procedure' since his shunt, the first time he's had anything other than the usual checks and screens. It's nervewracking!

And.  Tomorrow is Kingsley's first urodynamics study. That's fancy speak for a study of how his bladder functions. Another big 'procedure'.  OK, so it's pretty routine in the SB world, but it's King's first time so it seems bigger than it is.  It's during his morning nap time, involves catheters and him lying there with monitors and probes and stuff. I just don't see it going well, but I have my fingers crossed. Kingsley does have a tendency to amaze me. ;)

I am looking forward to getting through these two days and hearing the results. I have no idea what to expect, but any information is better than wondering and waiting, right?

I'm not, however, worried about how I'll spend my time waiting for the results to come in, in case you were worried about that. We have our VIP tickets for the Saturday night show. I. Am. So. Ready. :)

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