Tuesday, August 31, 2010

The Day

You know when something bad is coming and you try to tell yourself it's really not a big deal or convince yourself that it's not actually going to effect you, you'll be just fine? The more you try to block it from your mind, the more it sits there looming. All of a sudden, you have a giant elephant sitting smack in the middle of the living room in your head. 

I have been convincing myself for a month that tomorrow was not going to be a big deal. It's just a date.  Just one year from the day the big S B words were dropped into my lap, out of the blue, with no warning.  One year! It's amazing what can happen in one year. The roller coaster! But as it gets closer, I find I'm overwhelmed with thoughts about SB and Kingsley's future and all of those pointless things you think about that have no purpose other than to get you all worked up and upset about things you can't change or do anything about.

In a way, I'm hoping it will help with closure. I need to move further into the Acceptance phase of this little life drama instead of still hovering in the Just-Getting-By zone. Sometimes I think I'm almost there, but then I sit back and realize that I have a list of other SB families in the area - one 5 minutes away! - and I am unable to contact any of them for no apparent reason. I put it on my to-do list and then I never cross it off.  What am I afraid of? I think I don't want to see that this is a bigger deal than I make it out to be in my head. I don't want to see that life is all about SB and the family revolves around the diagnosis. I want this to be no big deal in our future. Is that unreasonable? I don't really want to know if it is.

I do know though, that tomorrow marks the day I stopped breathing. The day I thought things would never be okay again.  The day I was sure our life as we know it was over. Nothing would even be confirmed for another two weeks, but in my heart I was sure my baby was not going to come out on the winning side of those little statistics. We have come so far in a year.  Now, I breathe in his loveliness every hour, we're better than okay and our life hasn't stopped. I have to remember this and just be thankful that those 4 horrible months are over and that the last 8 have been so much more amazing than I could've imagined.

Monday, August 23, 2010

Alright, so something went wrong with the March photo and he almost looks cross-eyed in July, but here is my little beauty from January to August. Yes. I was a little bored tonight. I was supposed to be working on Cordelia's 2 year video. Yeppers, she's almost 2.5. I promise I won't procrastinate much longer. I can't anyway, I have to get started on Kingsley's 1 year video! YIKES!!  Why do we start these impossible traditions with our first child? Anyway, carry on with the cute pictures. Here ya go.

Saturday, August 21, 2010

The Perfect Family

I had a client once who had the most fabulous mother. She was an elementary school teacher. She was bubbly, happy, positive, realistic, and she adored her children. If we made a suggestion, she did it. If we gave her a resource, she used it. If we lent her a book, she read it. She went back to school to educate herself on the therapy we were doing with her child. She attended any and all training she could. When her second child was also diagnosed with autism, we were sad. But I vividly recall standing in my office talking to my coworkers and agreeing with them that of all the families to be able to handle life with two children with autism, it was this one. Those children were lucky.

I think about her a lot, because people make the same comment to me all the time. Sometimes it's phrased poorly and I have to shake my head a bit, but I think what they mean is: Kingsley is lucky to have us.

Let me explain a bit.

Growing up, I spent a lot of time at the children's centre where Kingsley's SB Clinic is. My mom was a physiotherapist there. She helped start the SB Clinic.  The PT who replaced her is now Kingsley's PT.  I spent time with children with a number of disabilities, SB included.  I volunteered there in my teen years and later worked as a lifeguard there for their family swims, sibling groups, and for therapy in the pool.  Now, I work with children with autism and their families. I work with schools, school boards, different children's agencies.  I coordinate services with SLP's, OT's, RT's, PT's, etc.  Jeff's mom was a learning support teacher. She helped the kids with special needs in the classroom. She later became a special education coordinator for the school board. Jeff's step mother is a nurse.  It would seem that things are stacked up in Kingsley's favour.

And yet, I hate when people say that we are 'the perfect family for this to happen to.'  Even worse is when people say that God chose us to have a child with SB.  I know what they really mean is what I meant when I said it for my clients and their family: the children are lucky to be born into that family. But what it feels like, is that we're being punished.  As if choosing different careers would've prevented Kingsley's SB.  Ridiculous, right?  All around the world, babies with SB are being born into families who have never heard the words 'spina bifida' and they live fabulous lives with their amazing parents. Our educational and career choices didn't cause this.

I guess the irony is that my mom and I used to joke a bit about how because of what we do, our perception of the prevalence of disorders or disabilities is so skewed that we had always assumed on some level that we would have a child with a diagnosis of some kind. I assumed ASD. She assumed CP or SB.  I will be holding my breath until Kingsley is two years old.

(lately, this is all he does with his lips. I think he hates solids and just keeps his lips clamped whenever he thinks I might break them out and try to feed him. did you notice the faux hawk? ridiculous cuteness)

In other, more cheery news, today we had a party for Kingsley! Because I wanted my sister and brother to be Kingsley's Godparents, the only time we could make that happen was the day after we got back from the cottage. Not a great time to be throwing a party.  So, we delayed it until today. It was so nice to have everyone come and celebrate our beautiful little boy.  Unfortunately, when I'm off having fun, I forget to take pictures, so I have none! Except these:


I am totally rocking the cupcakes lately.  And on that note, I'm going to go eat another one since party day calories don't count.

Thursday, August 19, 2010

Sleeping Beauty

I wish you could see how beautiful Kingsley looks when he's sleeping. It's not really captured in a photo and it never could be. In the middle of the night, laying beside me with his big chubby cheek smushed on the bed and his lips all puckered up.  He looks just like he did when he was first born.   When he sleeps, he sprawls out, as if he's trying to keep one hand on me at all times, making sure I'm not going anywhere. He wimpers in his sleep, and purrs, and giggles.  The way the moonlight makes his skin glow is pure magic.

I love watching him sleep.  But all babies grow up and Kingsley and I will soon be parting ways as far as cosleeping is concerned. A couple of weeks ago, I realized that he was getting woken up everytime I rolled over, whenever Jeff got in or out of bed, anytime someone (read: Rachel) came into our room. He does a long stretch from 7pm until whenever we go to bed (which is usually earlier than tonight!), but then he was getting up to nurse every hour or two afterward, three at the most. So, I tried putting him to bed on Cordelia's bed and just like that he slept 9.5 hours straight. It hasn't happened exactly like that again, but he does sleep better when he's not in my bed. Boo.

The slight problem here is that he doesn't actually have anywhere to go.  Neither Cordelia nor I are very eager to have her leave her crib.  I like having her contained! ;)  In the meantime, King's been starting the night on her bed in her big girl bedroom.  When he wakes up in the wee hours of the night, I bring him back to bed with me. It's a win-win. We both sleep, we both snuggle.

I find I sleep deeper when he's not with me, but overall, getting out of bed to feed him is rough. This is where I become a tired mama.  Getting out of bed is so much harder than rolling over. 

(imagine this smooshed sideways and wearing cute little boy jammies)

Wednesday, August 18, 2010

Three Kids, Three Days

I had this brilliant idea.  We had an awesome trip with Kingsley to Niagara Falls a couple months ago. We had a great week at the beach a few weeks back.  So, let's take the kids to Toronto for a few days. Brilliant! What could go wrong?

Where do I begin.

1. The hotel was not remotely accessible.  Things I notice more now, and not just because I'm toting around 3 kids and a stroller. It was an accessibility nightmare of stairs and narrow halls and lousy slow, small elevators. So is the majority of Toronto, it turns out.  I wanted to rip my hair out whenever we had to go anywhere.

2. The suite that we reserved was supposed to have a double bed and a queen bed. It had 1 king bed.

3. The suite that we reserved had 2 rooms so that the kids could go to bed and Jeff and I could stay up past 7pm and hang out. The rooms were adjoined by French doors that had no curtains. The girls stood in the glass and screamed, sang, cried, danced, etc. until I caved and went to bed with them. Both nights.


4. At dinner the first night, Cordelia dumped my cherry Coke on me.  At breakfast, she tipped Jeff's coffee. At lunch today, she knocked over her water and soaked me again.

5. The girls are allergic to Toronto. We got there and the girls started sneezing and weezing. We are now home and they haven't touched a tissue since we got out of the van.

6.  We got to the Ontario Science Centre and I had to cath King in a croweded, public washroom, on full display, on a dirty change table while he screamed bloody murder and Cordelia kicked off the wall and rammed the stroller into random people waiting to pee. Nothing but the lure of the Harry Potter Exhibition could have gotten me through that experience without a full on meltdown.  From me, I mean, as he was having a meltdown already.


7. Kingsley also had a meltdown at a restaurant through dinner and the next day through breakfast.  Add the constant spilling and we ate in our hotel room after that.

8. Yesterday we spent the day outside at Centre Island. I let Jeff put sunblock on the girls. He put it in Cordelia's eyes and she basically teared all day.  Poor thing had big puffy, swollen eyes by the time I finally got her in the bath.  Looked like she had been crying for days!


9.  I finally got Kingsley to eat more than a tbsp of food. He stuck his hand in his mouth and puked it all up. I forgot his bath insert, so got in the bath with him. He pooped. A lot.

10.  Last nights bedtime nightmare ended up with all 5 of us in the big bed this morning. Until Cordelia peed in it and soaked half. Cordelia, Kingsley and I were up at 6:30am as a result.

11. We got lost on the way to my brothers house and took 75 minutes to drive to a place 10 minutes away.


12. This swan bit Cordelia on the finger. It looks evil, doesn't it? She was okay, just scared.  She's still talking about the mean birdie who bit her finger.




The girls had a great time though! Rachel thought it was such a fabulous trip, I'm sure she'd repeat it in a second. I think the only part she didn't like was the HP exhibit, sadly. Kingsley spent most of the trip clinging to me in the mei tai. I think he had fun, too.

 

I think it will be a few more years before we go on any ambitious adventures like this again.  There's a lot to be said for being old enough for adjoining rooms. ;)

Tuesday, August 10, 2010

Seven Years, No Itch

A couple of days ago was our seven year wedding anniversary. Seven years!


At our wedding, I let Jeff do the speech on our behalf. I was not keen on the idea of preparing something or having to deliver it to all of the people who were there. I was pretty sure I'd turn into a sappy, blubbery mess. Jeff didn't do any planning. We stood up there and he started off by thanking everyone and then went on to reflect on the engravings we had done on our rings. Hm...  Jeff had never gotten around to engraving my ring. Not a good start! ;)  But then he moved on to discussing something he called the Best Days.  He said in our lives we only get a handful of these Best Days that will stay with you forever and be immortalized there.  This, he said, was one of those days. How right he was. Our wedding day was perfect, an absolutely perfect day.  Many times after that speech, we've thought about when our next Best Day would be and what was going to make it that way. We dreamt about finishing school (we were both still in the thick of it then), buying a house, starting a family, having careers... so much lay in front of us then. It's sort of amazing how much can happen in seven years.  Even though we now have all of the things we were dreaming about then, there is no way I could ever have imagined what it would really be like to be here.

Since then, I think there have only ever been three more of those Best Days for me. Just like a wedding day, there is little that can compare to the birth of your children.  The euphoria and excitement make those days so over-the-top phenomenal, don't they?  Even with the pain and fear and trepidation, seeing your child - YOUR child - for the first time, is a miracle unlike anything else.

In our guest book (which was a photo scrapbook type thing), I counted that seven people wrote comments about children: when were they coming? time to get started! next step - babies! Seven years later, the comments are still coming. I guess if you're crazy enough to have three kids, people assume you might be crazy enough to have more than that. So, are we going to have another? Or stop now that we have 'our boy'?  The Question of the Day.

Funny enough, I truly don't know the answer. After Rachel, there was no doubt. I wanted ten and I was ready to start that very minute. After Cordelia, I was ready to have my four girls, as I was convinced there wasn't a boy coming and I was just fine with that, but figured Jeff would want us to give it a few more attempts.  A few months ago, I was still wondering if I'd be able to stop at four. Now, I think we may be done. Maybe.

Maybe.

Maybe.

Jeff says it's up to me. I think he wants another, but he'd be okay with three. My psychic says I have the three I'm destined to have ;)  I was worried, after Kingsley, that my decision would be made to stop for the wrong reasons. Out of fear or because I had too much to deal with already. I didn't want to feel that he had made me stop, that I would've had more if it weren't for the SB.  It's definitely something I think about. Three kids are busy, and Kingsley's 'special needs' are just getting started. How in the world would I deal with a crisis when I was pregnant or with a newborn, plus the two girls? So many deep thoughts, so many things to consider.

What it has come down to though, is that I don't think I have the itch anymore. I look at my three babies and I feel full, in a good way.  I don't feel like anyone is missing from our house. We aren't waiting for anyone to join us, we're all here.


Maybe it'll change.  But for now, when I think back to our wedding day, THIS is what I wished for.  It came with a bit more than I had planned sure, but isn't that always the way? ;)

Friday, August 6, 2010

Karis

Karis is my niece. Kariboo, Karebear, Karis from Paris (or Kareee from Pareee, as I like to say it - imagine I have a French accent ;)). She has just turned 11 months old.  If you do the math, you can see that Karis was born September 2, 2009.  One day after my world was rocked.

My sister lives across the country, so I didn't get to meet Karis until Christmas.  By that point, I was in the peaceful, calm holding zone between the panic of finding out everything I could find out about Kingsley and Kingsley being born.  I met Karis again this summer when my sister brought the girls home for a couple weeks.

One night when we were at the cottage, my sister and I were looking through pictures on our laptops and she started showing me pictures of Karis's birth and videos of her first month. It was like I was seeing it all for the first time. In fact, I'm pretty sure I was. I had no recollection of her birth story, her first pictures, the first time Kamille (my older niece) met her.  I had no idea what she looked like as an infant, couldn't remember a single story about her as a newborn. How could I not know any of this about my second (and likely last) niece?


The first indication about King's spina bifida was on September 1.  I had a midwife appointment and they told me that I had screened positive on the IPS for SB.  The next day Karis was born and the last thing I wanted to hear about was another healthy, perfect baby when there was a 20% chance that mine was not. I was happy for my sister, of course, but I don't even remember if she sent me pictures and videos that I just didn't look at or if they weren't sent at all. If we talked about her birth, I wasn't listening. I didn't absorb any of it. Two weeks later when we got the diagnosis, I could barely look at my own children without sobbing, so I guess that was the end of even pretending to care about any other baby.

When Karis came home last month, it was an odd experience. I don't spend a lot of time with any babies other than Kingsley right now. I know people who have had babies, obviously, but not that I see on a regular basis. I had a whole two weeks with Karis.

Karis is smaller than Kingsley. My mom jokes that my sister makes skim milk and I make cream.  It's probably true. ;)  She's a bit shorter and weighs less. When you pick up Kingsley, it's like picking up a 20lb sack of potatoes. He's big, heavy, and you need to support the weight all by yourself.  When you pick up Karis, it's like picking up a miniature toddler. She's small, light, and holds onto you with her arms and legs, holding herself up. Such a difference that I never got used to.  She also crawled and sat up and ate, which was because she was 10 months old and that was expected.


What wasn't expected was how much it would upset me to see her doing all the things that a baby typically does at 10 months old. Things that my big, beautiful boy would likely not do at 10 months old.  I tried not to think about it - focus on the happy things happening! - but once I was reminded of the connection between her birth and his diagnosis, it was all I could think about. How sad that one of the happiest times in my sister's life was one of the saddest in mine. Her birthday will always be the anniversary of the Big Bad.  How dismal.


So, while my sister is counting down to the one year anniversary of her beautiful second daughters' birth and is thinking about returning to work and starting school again, I'm counting down to the one year anniversary of when I was thrown into this spina bifida world. A world I had no desire to enter and went in kicking and screaming.  I am thinking about when I will be used to it. When the sting will ease up. When I won't lie awake at night staring at my beautiful boy wondering why I can't just make it all go away.  I want to be happy when my friends have new babies, not jealous.


As Kingsley gets older, I am finding it hard to not dwell on the can't-won't-not likely-will never sort of things and I hate it. The unfairness of it all sneaks up on me. I'm hoping it's just because it's such a precious age when they're still such an infant, but the differences are starting to come out.  I'm hoping that it gets easier.  He's growing up and it's hard.  On me, anyway.  He doesn't care! He's happy as a clam doing his own thing. 

Focus, focus, focus. 

Happy thoughts.

Jersey Shore.  Nothing like watching the extreme opposite of your own life to cheer you up.
Little two year old bums in Strawberry Shortcake underpants.
Sleepy baby face stretches first thing in the morning.
Sunshine and low humidity.
Homemade pizza.
Sesame Street.
Vacation planning.
Juicy red plums.
Flip flops and jeans with pretty toes.
Weddings.
Dried fruit.


Listen to the MUSTN'Ts child,
Listen to the DON'Ts
Listen to the SHOULDN'Ts,
The IMPOSSIBLEs, the WON'Ts
Listen to the NEVER HAVEs,
Then listen close to me-
Anything can happen, child,
ANYTHING can be.
~ Shel Silverstein

Tuesday, August 3, 2010

The King in Action

video
Grass is new to Kingsley. So is sitting! You can see his one hand is playing in the grass and the other hand is supporting his weight. He's getting better in that he's sturdier, but you can see how he sloooowly folds forward. I can't believe how far he's come in just one month though! He couldn't even hold himself in this position when we were at the cottage.  Now he's holding it long enough for me to let go and make a video. Amazing.

(I tried to get a video of Kingsley tucking his knee up like I mentioned he was doing the other day.  I had him out of his diaper again so he had full range of motion, on his tummy, just like last time.  Camera ready, set, action... He rolled over instead. And then when I was flipping him back to his tummy he pooped. On me. Video: FAIL!! Maybe next time.)

Sunday, August 1, 2010

Big Things are Happening

The K-man has had a busy weekend and my brain is working overtime once again.

Today, we went to a birthday party for another little girl who has SB.  It was her first birthday. I met her mom the day before Kingsley was born. Quite the timely meeting, she told me all about her experience in the hospital, from the birth, to the PCCU, to the 7th floor, to coming home, as well as how it felt to see her go through the surgeries. 

I can't even begin to tell you how encouraged I felt after meeting her and seeing the pictures of the sweet little baby she had.  There's something different about meeting other moms in real life instead of just online, especially someone with the same doctors and specialists that you have.  She was real, her daughter was real.  We could share our stories and get instant feedback about how similar our experiences were. She had been where I was going. Going the next day, it turned out.

So, I finally got to meet the Little Miss.  She's a cute little thing, as most one year olds are. Dark hair, big brown eyes, pretty party dress, party shoes that she was standing up in. All by herself. Standing. Walking. I could not take my eyes off of her.

Spina Bifida is like a lottery.  You get given these numbers (and letters) and it means something, but not a whole lot. Kingsley's combo is S1/S2. That's the location on his spine where the opening was. This little girls' combo is L4/L5.  L5 is right above S1, so on paper, Kingsley has the better deal since lower is better. But in reality, the numbers/letters don't actually mean anything. For complicated reasons, sometimes the spinal cord has damage above where the opening was and sometimes it only effects the areas lower than the opening. And sometimes it's exactly where the opening was. A lottery. You are given your combo and you just have to hope and pray that the functioning level is at or below what you're given.

We don't yet know what Kingsley's functioning level is.  I am by no means an expert in gross motor stuff, dermatones and whatever it's all called, but I think King is more L4/5.  It will be a few years before we'll know for sure, I imagine, until he can tell us what he feels and doesn't feel or attempt to move his body in the ways we ask him to. 

And perhaps that's just the pessimist in me.  This mama was playing with King today, bouncing him in her lap, squeezing his chubby legs. She swears that what he's doing/not doing right now is exactly where her little girl was at six months old. Oh, the dreams that waft through my head when I think about that. They saw the ortho recently and they predict that she'll just need orthopedic shoes to help her walk, that's it. This little girl has won the SB lottery.

Maybe he'll win the lottery, too. Maybe he won't. Does it matter? Not really. It will make life easier for Kingsley, obviously, in many ways. But Kingsley is Kingsley. No matter how you slice it, I've won the Amazing Child lottery. The Best Son Ever lottery. The Cutest Baby Boy lottery. The Sweetest Baby Blues and Sunny Smile lotteries. I could go on all night! :)

I was wrapped up in these thoughts this evening as I got Kingsley ready for his bath. I had him on his tummy in the hallway, all nudied up and squishy, when he did the most amazing thing. He pulled one of his knees up. Just a little bit and just one of them, but I watched as he bent his knee and moved it up, as if he was going to tuck it right under him, push up and crawl away. If he could have gotten his hands under him, he would be there.  Over and over he did it. Straight and flat, bent and up. He is getting ready to move. Onward and upward, my boy.

My dad took pity on me and lent me one of his cameras. This is King discovering grass today at the party.  His romper is one of my favourites. It says: "stronger than you think". Keep reminding me, King.
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