One Year

A year ago I thought I knew who I was. I was happy and had a plan and knew where we were going. Then BAM!

Spina Bifida. And our world tilted a bit. Not that much, just a bit. We are still heading forward and things haven’t changed that much. But a year ago I didn’t know that. No one knew that. All we knew was that our world had changed forever and we were trying to catch our bearings and see what we were looking at.

I keep a journal so it is very easy for me to read back and see what I felt in those days leading up to the diagnosis, but the moment the doctor took me into his office and told me that our child had spina bifida – that is ingrained in my memory and I don’t need to look it up. Maybe reliving it, telling the story from the beginning will help me to let go. I think the one year anniversary is important, the second year not so much. So here goes…

July 16, 2009. This was the day I went for a second level ultrasound, 21 weeks pregnant and knowing that my baby was a boy and 2 weeks ago they couldn’t see his cerebellum (the important part of the brain – well it’s all important – but the part that controls breathing ect). But all my tests had come back ok so I tried not to worry, I even told Kyle to stay home. So I was in ultrasound for 2 hours as they twisted and turned me, had different people come in and then went outside and talked in whispers as I lay in the dark with my baby and my thoughts. Finally they told me I could wait and talk to the doctor, and gave me some pictures.

I didn’t have to wait very long. I had my new blackberry and was sending messages to Kyle. But really what could I say. That I was waiting, and that I was very, very scared. The doctor called me in, this was someone that I had never met before but was seeing me as a favour to my regular OB.

The conversation – that I remember – went something like. “The ultrasound shows that the baby has spina bifida. You are 21 weeks along; if you want to terminate you have until 24 weeks. We will support whatever decision you want to do and if you want to terminate we can take care of that here instead of your own hospital if you want. OK I’ll leave you alone now and give you some time. There is a phone you can call someone and I’ll be back.”

I am not sure if there was more, it doesn’t really matter because that is how I remember it. This is what your baby has, you can terminate, and I’ll be back. I tried calling Kyle, thinking oh my God, what do I say?! I sent him messages but he wasn’t there. So I called work and talked to one of the girls there. Deep breath, ‘the baby has spina bifida and we don’t know what we are going to do’. I finally did get a hold of Kyle and he asked the question I was wondering. What does this mean and What are we going to do?

The doctor and I did discuss what spina bifida was, but I can’t really remember what he said. I remember quite clearly what he said two weeks later and that was that spina bifida meant paraplegia, total dependence, mental difficulties, diapers and just a hard life. And not just an effect on the baby and me, but Kyle, our relationship and on Katheryn. He wanted me to reconsider our decision – but I get ahead of the story. I left with an appointment to come back downtown the next day to meet genetics.

Then I had to fight my way back home during rush hour. Sitting in the middle of the subway (someone was nice and gave me a seat) thinking about what I was told, not being able to look into the future, not wanting to feel kicking and punching in my belly. Could I see anything, feel anything, do anything? No, I was stopped. Staring out the window at nothing with tears streaming down my face, alone in the subway car full of people.

I got stuck in traffic on the way home – yay for rush hour – it must have taken me over 2 hours to get home, but it felt that days. I called my parents at the cottage and my sister from the car. They all knew I had gone for an ultrasound and were waiting to hear that everything had gone well. But then I called and couldn’t talk, needing to take a deep breath and just get the words out. “The baby has spina bifida.” No more Nickolas, just baby. And give out the small amount of information that I knew. The people on the other side of the phone crying. Their world had stopped that day as well.
Kyle, Katheryn and I went out to a family birthday dinner, tried to act normal, not wanting to disrupt the happy occaision. I don't think that we succeeded that well. I know I was numb, just letting everything pass me by, a little blurry, a little grey.

Needless to say, Kyle and I didn’t sleep very well. In fact I think I got up that night and did some internet surfing. What is the first thing that pops up when you type spina bifida? Wikipedia – the horrible, scary site. I didn’t want clinical explanations of what caused it, or why. I wanted to know what to expect and what my child would look like! I finally found a site http://www.spinabifidaconnection.com/ that told me just what I wanted to know. I could actually see real-life children with this, and read postings from their parents.

The next day Kyle and I visited genetics and got some solid information. We talked about a neural tube defect, physical function, hydrocephalus and probably more. We wanted to know definite information. Will he walk, will he play sports, will he go to school? Will we need to find a new house? Do I have to quit my job to stay home? What about Katheryn. But we couldn’t get that information – they couldn’t even say where it was! Just an estimate, and some possibilities. We left that appointment with more information, more appointments and a bit more understanding.

The next couple days are a blur. Doctors, tests, questions and more questions. Going back and forth, what will we do? What are we looking at? I spent my 31st birthday at Sick Kids hospital and Bloorview Rehab hospital talking to doctors and getting tests done. And still thinking, thinking, thinking. I had it down, explaining spina bifida to family and what we were going to do. Everyone was very, very supportive. They were with us no matter what we decided, and not pushing either choice (to continue or to terminate). I am so profoundly thankful for this; I think I might have broken if there was any pressure.

For 9 days we saw doctors, getting tests (MRI, amnio) and reading; reading blogs, internet sites, and information packages, everything I could get a hold of. We made our decision on July 25th, Kyle’s birthday. We had talked about what was going on, what we thought of the information we were told, what we thought, how it would affect Katheryn. Worried about Katheryn and how her life would change.

I remember exactly where we were in the house when we decided. We each asked the other what they wanted to do. Pretty much at the same time we said we wanted to keep him. And that was that. We had Nickolas again.

Our world started turning again, we were pregnant again, and we started our journey with spina bifida. One year ago.

A perfect summer day

We spend a day enjoying ourselves by the pool. Nickolas went swimming - was alot happier that the water was a solid 80F and not 72F like the last time we went in the pool at grandma and papa's. My sister and I hijacked the pool at my parents house while they were away and brought the kiddies to play! Katheryn liked being near the water, but wasn't that excited to actually go in. But liked throwing and catching the ball that auntie Laura threw in from the water. And Nickolas just floated on by. With me of course. We had a floaty thing he lay on, but I didn't really trust it, and his life jacket doesn't fit him. It is too long and chokes him if we do it up - the oppostie effect we want from a life jacket! Uncle Mike came home and enjoyed the fun too!

I am so amazed at my brother. He is quiet and seems shy, but he has really stepped up with getting involved with the kids. He doesn't complain when I hand off one or the other, and carries Nickolas around like a pro. All we have to do is get him to change and cath him! (Kyle tells me that as a male it is harder to cath Nickolas).

The next day, since we are enjoying being outside. I thought Nickolas should have an upright view of the backyard. He's not sitting by himself, so usually he is lying with me on the grass, or sitting in my lap (where we overheat) and enjoying the outdoors. So we dragged his corner chair and enjoyed the grass, the hot weather and watching Katheryn run around like a crazy person. Until the hornets came back and scared mommy back into the house. I did have rescue BOTH kids and the chair in my 'race' back to a hornet-free zone. Katheryn couldn't understand why we had to go inside, but when a hornet landed on Nick's toys and there were at least 6 others that I could count flying around I thought I'd been pretty good up until then. I didn't pick her up and run - but I came very close. (I'm a little bee-a-phobic).

When I was looking at these pictures on the computer I couldn't beleive I had a red-haired baby!! But he really looks red here - usually he's more platinum blonde.

Nickolas is doing soo well with sitting. He was almost upright and reaching up for toys and could balance for a little while as well - I'm going to have to get a picture - even video of it. And when he starts to topple he catches himself! Not that he's ready to sit by himself, but it's a giant start!!!

Yay! Go Nickolas!!!

What does perfect mean?

The perfect child. This is what everyone dreams about.

When you get the diagnosis of spina bifida, you think that the perfect child is shattered. You mourn that perfect child, you mourn what could have been. I don't like admitting it (even to myself) but sometimes I wish for that perfect child. That I could have normal baby worries, that I could dream of a future without braces and assisted walking devices. That I could have the dreams and worries that my parents had about me. That is would be easier.
BUT...
What does perfect mean anyways?

Is Katheryn perfect? Yes, I think she is. With her tiny size, her puking, her language, her finicky eating. Yes I still think she is. Is Nickolas perfect? I do hesitate, (there are so many things to think of when I write this). Yes he is perfect too. With the spina bifida, with the worrying and the anxiety. Yes I still think he is perfect. And I don't think I need to defend this.

What does perfect mean anyways?

Is perfect the child that comes into the world, naturally, with that first cry, nurses no problem and then falls asleep, to wakes every 3-4 hours to nurse and be changed. The smiles at 6 weeks, laughs soon after, sits on time, babbles early, rolls over ect. Pretty much reaches all milestones on time without causing the parents a night of worry? What about beyond? Is perfect that 50th percentile child that isn't too skinny, isn't too chubby. Has all kinds of friends, comes in when the street lights come on, doesn't talk back, only has nice friends, loves school, loves sports and does well in both, is never sick, doesn't talk back. Wow, that puts alot of pressure on a poor baby, and parents.

What does perfect mean anyways?

For me, perfect means happiness. If I have a child that can grow up to be happy, then I think this means perfect to me. I don't always mean that smiling, laughing child (that is nice), but it goes beyond that. In school we learn about quality of life. A happy life. Perfect has such societal connotations to it. Why do things need to be perfect? Nothing is ever perfect.

So perfect means whatever my kids turn into. I am not perfect, not even close. But that doesn't make me any less loved and happy and myself.

But... I wanted to learn about SB

Anyone who followed my posts last month probably notices that I did a Learning about SB 'series'.
I've moved it to it's own blog. http://www.aboutspinabifida.blogspot.com/ it is also a link on the side of this page. I hope you enjoyed it!
I plan to hopefully add more infomation to that site. My final plan is to make up a powerpoint presentation that I can present. But I might be getting ahead of myself (surprise, surprise).

Update!

We had a couple of appointments in the last couple of weeks. All with good news.
Nickolas got the all clear from neurosurgery. We were in and out in 30 minutes. Everything is looking great and we will go back in 1 year and get a followup MRI at that time. YAY!
Physio is going well, he is improving so much. He keeps trying to sit up, work those abs, and when he is sitting up it is much more solid. He used to sit very far forward, with his belly resting on his legs, now he is still leaning forward, but off of his legs and twisting around. All very good progress.

Katheryn got her language assessment. She got admitted to their service. I was concerned that they were going to say that she was ok. I know it sounds weird, that I want someone to say that my daughter is behind in something. But when they recognize it, it gives us help. So we had the assessment and Katheryn's language is at a 21 month level - 6 months behind. I'm amazed at how much she has improved in the last couple of months. And I am very glad I asked for an assessment at 18 months - when I found out that she was a little behind - because after an 8 month waiting list we finally were seen! But now the real work starts!

Whenever I think about how I want Nickolas to sit up by himself NOW, roll over more, start to crawl ect. I want it all now. I'm finding we are progressing, just not fast enough. But it will come. It is the same with Katheryn's language.

So yes both my kiddies gotta get some kind of therapy - my mom tells me that I went to speech therapy, and she is so much like me that I'm not really that surprised. Or worried. I guess that is the key, when to be concerned and worried and when to take things in stride and just go with the flow. We are busy flowing down the river right now!