An anniversary I don't care about

It's been 4 years and I don't care.

The heartbreak has faded, the world is aligned. The anger at the obstetricians has dulled. Our lives are in focus, our faith in each other restored. The grief is gone, and the 'why me' has silenced. There might be some twinges that come and go, but not today.

I'm not looking back at where I was 4 years ago on D-day (diagnosis day). In fact I probably would have completely forgotten about it (it was yesterday), except that I'm planning and thinking about what to do for my birthday and realized that it must close.

I have blogged about my thoughts every year on the anniversary.

1 year - http://www.riddingfamily.blogspot.ca/2010/07/one-year.html
2 years - http://www.riddingfamily.blogspot.ca/2011/07/2-years.html
3 years - http://www.riddingfamily.blogspot.ca/2012/07/3-years.html

I still think of the subway ride home, sitting at the stop light, and the experience of an ultrasound where you know there is something wrong, but don't want to hear the words. Those memories will always be with me. But the pain is gone, it is just a memory, a flicker.

So it has been 4 years since we first found out that spina bifida will be a part of our lives.
And it doesn't matter.
It's a part of our lives, it always will be. I will continue to work on educating people around me, advocating for my family and enjoying the love I get to experience.

 

In learning about the stages of grief regarding perinatal bereavement for my professional education, I can recognize the symptoms that we experienced after the diagnosis. It was odd to realize that the charts they showed us could also apply to what we had experienced after our diagnosis. It's difficult to recognize that we were grieving, and at the time we didn't really identify with this term because we were also celebrating our child.

There is no grieving here.
Love, laughter and a 3 1/2 trouble maker and his sister.
Just like every other day.

14 Years and counting

The summer of 1999 seems so close and yet so far away!

But June 22, 1999 saw two people who have known each other for many years, reconnect and start that going out together.

And we didn't know it then, but what we actually did, was start our life together.



Look at those fresh young faces.

All that energy and up for a good time  

A couple of adventures

You know how some people say that they found their soul mate.
What really is a soul mate? Something lovey dovey that people say when they are in love...

It means someone who will dress up because that is what you like to do
(He might not look happy - but he was smiling on the inside)

And dress in costumes for murder mysteries, not just once but many times

And of course when the kids came along, that didn't stop us from dressing up!

We enjoy together

And we have grown together

We have become grown ups together
(or at least give the illusion of being grown up)

We started as 2 people who found each other, started a life together
And then worked on a couple of other lives

We became a family together

And learned how to be parents

We learned how to face challenges

And found that we really and truly are right where we should be, with who we should be.
Because we really do work well together.
The optimist and the realist (and we switch back and forth between these)

Because in 14 years we have had a lot of fun,
We do silly stuff
And know that it is silly and fun, and we don't care
If I get an idea in my head, I know that if I run with it, Kyle will come with me

 We can be who we are, who we are meant to be, and who we want to be.

   

And calling each other crazy is perfectly acceptable and encouraged

So 14 years has brought us a number of changes
Because these kids just out having some fun together

Turned into a life together

Our 14 year anniversary remains with our lives full of love and laughter

Thanks Bernard!

Happy 13 month anniversary Bernard!

If you have no idea who I’m talking about, you /can read here where I was trying to decide on an appropriate name for Nick’s second shunt.

I thought about celebrating the 1 year anniversary of the shunt, but that didn’t work out so well last time. When Nick had to have a revision at 13 months.

So 13 is the new 12! Seems fitting for a Friday the 13^th baby!

After reading the post from 13 months ago, I am more calm with the shunt right now. It`s never far from my mind, but it hasn`t been on the radar lately (and I`m really hoping I am not jinxing myself). I haven`t measured his head in a while, we are cleared by neurosurgery for 1 year and Nick is behaving like himself.
But at the same time, when Nick wakes up in the middle of the night uncontrollably crying and upset, I mentally pack my bags for the hospital. But when a dose of tylenol and the morning comes and everyone is fine again I feel much better. That being said, I have emailed Nick`s neurosurgeon 2 or 3 times this past year.
I know the day will probably come, but I`m hoping that it`s in the far distant future.
So Bernard is welcome to stay off the radar for a very long time.

I saw (adapted) something today that is very appropriate:

You can`t scare me,

My child has had brain surgery.

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!

Finally a post! and an anniversary

First of all I want to just say that I have not been ignoring my blog. I’ve hardly posted anything in the last 2 weeks, but in the meantime I changed my photos and layout. AND I’ve been composing blog posts in my head, along with taking lots of pictures for various posts. And I have been editing 3 posts that are just not ready to be published yet.
FYI when I finally post those - I'm going to adjust the dates so I don't have 3 or 4 posts all in a row - so look back at the end of November.

So those are my excuses and I’m sticking to it!

In the meantime I’ll leave you with a couple of pictures.

If I ever need to think about how far we've come - this is definitely proof!

We just celebrated our 1 year anniversary of Nick's shunt placement (at 3 weeks old). I blogged about it, but Nick was home for 5 days before we were headed back to the hospital to be readmitted and to have brain surgery in the morning. I remember it like it was yesterday...

In the scheme of spina bifida related surgeries, the shunt placement is probably the easiest, but the most stressful. Alot of stories of shunt placements are just like ours, finally getting home, getting settled and then needing to return to the hospital. The actual surgery only takes 1 hour. But I learned that a one hour surgery does not equal a one hour wait time. I waited for 3 hours in that horrible waiting room, exhausted and worried and just waiting for Nick's name to appear on the computer screen before we were told he was in the recovery room. My father waited with me. I probably would have been a mess without him.
We did find out that alot of the waiting time was trying to get another IV in Nick (he went through ALOT of IV's). But at the time I had no idea. Now I know for next time - because with spina bifida there is always a next time. I really didn't like his shunt scar - now it's covered by hair and no one knows it is there. And Nick bounced back so well from the surgery.

We were told that if he can go 1 year without a shunt revision (needing to change the shunt - usually because it gets clogged or infected) then chances are it would last. What last means, I am not quite sure. But we had it a year!

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.