Spina Bifida Clinic - part 1

We had our spina bifida clinic on Friday. This is part of our crazy, crazy, super crazy month of July! It happens every 3-6 months or so, when we cluster all of our appointments. So for a couple months we seem to live in the hospital or clinic.
Nick is happy to just sit in the waiting room chairs like a big boy!
Get used to it baby boy!

And we brought lots of things to do! And tried to keep things a little fun while we waited...

and waited....

and waited!
I think the waiting may have turned Nick a little goofy!

Nick totally rocked the developmental pediatrician!
Lots of smiling and interaction, even a couple of babbling words. And waving good-bye (once she left the room). And we have some goals to work on more words. She suggested we try animal sounds! Sort of like cheating at making words!

This is Doctor Church with the spina bifida clinic at Holland Bloorview. Not only is she easy to talk to, friendly and great with the kids! But she has spina bifida herself! How cool is that?!!!

We made it through pediatrics, kidney ultrasound and tried to fit a quick trip to orthodics before urology.

Then it's back to more waiting. And fooling around!

And trying to sleep - mainly because Nick doesn't like to nap when we are out. He didn't actually sleep. More like lay his head down, and then pop it back up and ready to go!

That's not working! So let's try to escape!

And pull out the bottom of my distraction activities! 2 new books!

And we'll round it out with some standing!

Nick's newest favorite word - uhoh! That's a word right?

Nick had the opposite of white-coat syndrome with the urology resident. Every time she left the room (to get an answer for a question I asked her) Nick wanted her back! Poor resident was asked about starting a bowel routine, increasing ditropan, changing the mode of delivery (what about right into the bladder?) and a prescription for the UTI.

Then she said she was going to come back so we could problem solve why he got a UTI. What?! What is there to problem solve. He is cathed regularly for the last 20 months, he's had 1 UTI (without fever or crankiness) I'm pretty happy with that.

Over all, Nick checked out well for everything. We got some antibiotics (finally) for a UTI Nick has been fighting since last week! Not happy with my home pediatricians response time to that one! AND I signed our family up for another research study. (Ask me to participate in research and I'll jump at it!) I have to read it over, but I'll blog about it later (it is for the drug company for birth control to add folic acid, and the experiences of living with a child with spina bifida).

One thing that I like about the clinic is the ability and opportunity to chat and socialize and network with other families. Now I should add that I'm a touch social. I'm not quite sure how that happened. I used to be the shyest person.

During various waiting times I was chatting with Shauna, who is the representative for the SBHAO who tries to be at all of the clinics. Thanks to her I got to connect with 2 new families who live in Durham region by us!
She connected me to a family who lives in Bowmanville and have a 2 month old! I think I might have talked their ear off a bit!
I had also talked to Shauna about a family in Newcastle who had a HUGE SWWR walk that I was sorry that I missed. And she wrote a book that I just ordered (so excited, can't wait to get it!) It was amazing to watch her 4 year old daughter RUN with her brothers!

That's what I love about the spina bifida clinic!

2 years

2 years and everything has changed.

I wish I travel back in time to that day. I wish I could be with myself, who was all alone in downtown Toronto and hearing those words. I wish I could have been there when I had to tell Kyle over the phone, because it was 'just a precaution and he might as well stay home with Katheryn'.

I wish I could be there, as I sat on the subway wondering, hoping, praying that this would all go away. I wish I could have been there as I was stuck in rush hour traffic unable to say the words to my mother who was on the phone.

I was all alone, but even in a room full of family and friends, it was still just me. I didn’t know! All I wanted was answers that would not come. I wish I could sit there and give the answers, or at least what questions are important.

I wish when I heard the words 'terminate the pregnancy' I could have been there to show myself that it wasn't necessary. It was a horrible decision to give a mother. In our world of medical advancement, healthcare and great strides in research, why is that even an option anymore?!

I wish I could be there, to sit beside myself and show beautiful happy pictures of my child. Healthy and happy. I wish I could say that spina bifida are not swear words, that it is not a death sentence or quality of life issue.

I wish I could be there to say that everything will be ok. That our family will adapt and be better for it. That the worry and concern about every little thing does not take over and tell myself that spina bifida is not our life.

I remember being worried if we would be able to go to the cottage, if he would be able to swim? Go to school? Play sports? Have fun with his sister? Be part of the family?

All of those concerns that seem so silly on this side of it.

And when I think about how my parents were concerned for ME, how we (Kyle and me) would survive this turn in the road. I wish I could have sat down and showed them that they were concerned about the wrong things.

Don't worry about how life changes when you hear the words "spina bifida". Life changes the moment you see that plus sign on a stick, the moment you wake up in the morning. Life changes! Some changes are expected and some come out of the blue, but that is the nature of life!

2 years ago I wish I knew that doctors don't know all. That sometimes they are horribly, horribly wrong (the words 'burden to your family' comes to mind).

You adapt, you grow, you laugh, you love and you live!
(You really don't care that the kitchen is a mess, but it matches your sons face!)

I remember sitting at a stop light. Staring, wondering, worrying. Wanting it all to be a dream. Why was this happening, why to us, why can't it just go away?! What was my life going to be like, with either choice we made?

I so wish I could have seen into the future, and seen myself now. And know that everything would be ok.

And how in 2 years later everything has changed. And I would never, ever want to take that back!

Welcome to Amsterdam International

I was contacted a couple months ago about someone who wanted to share with me a poem/essay that she had written. She is a fellow special needs mother who felt that Welcome to Holland is just not enough to explain what it is like to receive a special need diagnosis (whatever it is). I actually had it saved as a post since January! But I think we were a little hectic at January and I never actually posted it! Oops.

I did find Welcome to Holland to be helpful at the beginning of our diagnosis. I know many other mothers who hate it. Rereading it, I agree that Welcome to Holland is very short and sweet and while it offers hope of finding the joys of Holland - please read or reread it, it skips soooo much.

Dana Nieder decided to do something about this, and wrote her own entry into Holland.

Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.

And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)



Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

© Dana Nieder 10/2010

This new take on Holland came to mind as our Baby Center moms have been discussing Holland and what it means to us. And another SB Mommy decided she wants to blog about her own take to Holland! I won't spoil the surprise! But if you are interested in reading about her idea and contacting her - the post is here. I'm already thinking about what I can add!

The thing about folic acid awareness...

Folic acid. You know, the thing you are supposed to take when you are trying to become pregnant so prevent some horrible birth defect.
 
That is what used to come to mind when I heard about folic acid. And the new campaign by the SBHAO (our organisations) help to educate the public with their educational posters.
"Every healthy baby is a victory.... 1 in 1300 babies are born with a neural tube defect" Is the Ontario slogan.

That slogan makes me a little sick to my stomach. In fact it makes me down right nauseous when I know that it comes from my own organisation. You know the one who is supposed to show what spina bifida looks like, the organization that is supposed to support the parents and educate the public. The organization that I work so hard fundraising for with calender sales and the SWWR walk.
Jill has already discussed it. But if every child is a victory - except of course my child. My glaringly 1 child, in 1300 victorious children!

Other folic acid ads are the same. Take this or suffer the consequences!!
Except of course for those of us taking folic acid when we got pregnant (Misty touched on this). Lots of us moms (lots and lots) took folic acid and our kids still had spina bifida. So wait a second? Folic acid doesn't make us victorious? Folic acid isn't the end all, cure all?

Folic acid is part of the picture. But so is environment, so is genetics, so is other unknown aspects of our lives. And sometimes it is just part of the plan. I am not against folic acid, I know how important it is, and I make sure that all of my child bearing family know to take the super dose of folic acid - my sister, Kyle's sister in law, and my brothers fiance. And of course myself.

I have been really lucky that I haven't heard the "didn't you take folic acid" question. Never.
I was very vocal that I was still breastfeeding and taking prenatals when Nick was conceived. And continued them when we got our positive test (at 4 weeks). So at that 8 week mark (you know the one) I was fully folic acid-ed up!

In fact, when I was first telling people spina bifida, I explained it by saying "you know the thing that folic acid is supposed to prevent? It doesn't always, and that is what Nick will be born with"

Folic acid is like sunscreen, like condoms, like seat belts. Yes it helps to prevent, but not all the time. So when you hear that someone got cancer or pregnant or hurt in an accident do you automatically think they were to blame?! Or that they were not doing everything they could do for their own health?
Because 1 in 1300 is  still 99.923077 percent effective.
Are condoms that effective? Birth control? Can you think of something that is more than 99.9% effective?!

Folic acid is quite effective, the rates have decreased over the years (from 1 in 1000). But spina bifida and other neural tube defects (when something happens during that pivotal 8 weeks mark of the developing spine and brain 'neural tube') are generally an unknown cause. Something about genetics and environment, diet and unknown factors.

This year's folic acid slogan reminds me of the advertising head thump that occurred this week with the Toronto Argo's (football). "Home is where the heart is, it is also where we hurt people". Oops!

So that is my little spiel about folic acid. And maybe a plea to the SBHAO to rethink their slogans about folic acid, with a little more tact to parents who know that they were apparently left grievously wounded on the field of battle. While 1300 other children stand victorious.

Our Second SWWR! Nick's Cheering Squad!

On Sat June 18 I was lucky enough to have loving family and friends who wanted to come out and participate with us to spread awareness about spina bifida!

Our team was renamed Nick's Cheering Squad, because we do more than just love him (last year it was Nickolas' Loved Ones) - we cheer him on every step of the way! Who is lucky enough to have their very own cheering squad at 19 months old?!

This year I was blown away by the amount of people who wanted to come out and walk with us! I had almost 40 people registered to walk! Unfortunately sometimes life comes up, and we had a nice and sweet group of walkers!

Including not just one (Nick) but two kids with spina bifida! (His girlfriend Alejandra!)

We were also lucky to have a photographer for SNAP media to come and take some photographs of us getting ready for the walk (a more than a little disorganized!).

 http://www.snappickering.com/?option=com_sngevents&id[0]=291109

So after feeling a little like stars (with our professional photographer) we decided to head off! (The above 3 pictures are thanks to Kim Lowes and SNAP media! - even if I did photoshop the family a little)

  

Our walkers were:

Amanda Ridding

Kyle Ridding

Katheryn Ridding

Nickolas Ridding

Gord Bartley

Michael Bartley

Laura Bartley

Jamie Mack

Norma Cobb

Lisa Aubertin

Emily Aubertin

Hannah Aubertin

Ashley Hunt

Kristine B (and S)

Heather Radford

Ryleigh Radford

and Arnie (dog)

Followed by our second SB family!

Antonella Masabo

Alejandra Masabo

Frances Logan
Dee Logan

Micheline Spencer

and other family

And some cheerers who came out, but were not able to walk:
Marie Ridding
Marty Ridding
Gwenda Bartley
Penny Radford

Some last minute posing from uncle Mike!

And we are off!

This year's t-shirts had the slogan 'ask me' to try to get people to duh! ask us about spina bifida.

And it worked! I had a couple of people stop and ask me about what we were walking for, and proudly told them all about Nickolas and what we were cheering for!

We even had an on-the-spot donation!

This year we all stayed pretty close together.

We had walking, running, biking, wagoning and strollering!

And some 4-legged walking as well!

We walked along the Pickering Waterfront (same route as last year). From Millennium Square in Pickering to Rotary Park in Ajax.

This was a last minute change - we had originally planned to walk from Rotary Park and through the Ajax waterfront, but the city informed us we would need a $110 permit to walk or picnic in Ajax as we were a group of more than 15 people. I was less than impressed and super stressed as I scrambled to find a nice path that didn't go along the public road and provided some shade (unlike half of the Pickering walk). OK done complaining!

Kyle with Katheryn and Nickolas

Walking through the 'fairy dust'

We walked, and played music, ran around!

(Katheryn is wearing last years shirt)

We stopped at some picturesque spots for some cute pictures!

And we posed for some!

Heather and Ryleigh

Movie star Lisa - always ready with a pose!

And me!

 

We finally made it to Rotary Park for some refreshments, bathroom breaks and a little R&R!

And then we headed back.

Hot, sweaty and happy that we raised awareness and did our best to show what spina bifida looks like!

At the end of our walk we were rewarded with some pool time!

And a nice family bbq, with some good eats, great conversation and best of all - we got to dip our feet in the cold water!

Nick even got some time with Alejandra!

But at the end of the day, this is the guy we were walking for!

Can't wait for next year!

And thanks to the amazing fundraising of family and friends (including $500 raised by Nick's great aunt Norma Cobb!) we raised over $2200!!!

Sorry I'm so late in posting about the event! I wanted to put the SNAP pictures on my blog, and had to wait for them to be available! And I've been working on this for 2 weeks!