A gift of spina bifida

It is easy to focus on what I am missing by having a son with spina bifida. (This is a followup to my last post - A Moment of Grief) When talking about 'a different kind of perfect' I might think and imagine what I am missing, how things are worse now that we have spina bifida in our lives. Concentrate on the worry, the appointments, and the hardships.

But thanks to a friend, fellow mother and blogger Joanna for reminding me that there are things that I have gained by having spina bifida in my life. I have been given a gift. Yes, you read that right. It might seem that gift is a strong word to talk about our diagnosis, but it really isn't.

It has brought me the gift of celebrating each little milestone, to recognize the amazing capacity children are born with. It has shown me that my child is stronger than I could ever be. It has given me the gift to realize that some things in life are important, and some things are not.

Spina bifida has brought me clarity.
It reminds me of when I first got my glasses. I commented to my mother that Now I could see the leaves on the trees when we were driving. I never knew before that I couldn’t see the leaves; I didn't know I was missing anything. But now that I had seen I didn't want to go back to the blurriness.
Having a child with spina bifida has given me glasses that I never knew I needed. It has opened up a life for me that I don't want to give up.

It has given me the clarity, time and opportunity to enjoy and marvel at little things (even during physio). To be thankful for every movement, every laugh, every smile and to marvel at the love that I see and feel every day. We celebrate each exploration of our world. I have less moments of mundane and more moments to bask in the joy of my son's accomplishments.

It has given me a voice to ask questions and seek current research. It has made (ok maybe I'm not quite there yet), I should say, it is making me into an advocate. Confident that I am a strong mother who has good instincts.

It has given me the gift to realize the strength of my partnership. That we have been to the bottom of the pit and have risen higher than we realized that we could. That we are stronger now than before we knew what spina bifida was. I have been given the gift to realize that we are four individual pieces of a puzzle that produces a beautiful picture.

 

It has brought me a gift of a family of mothers and their children that understand exactly where I am and what I am thinking. It has given me children that I have followed and will follow being born, growing older, rolling, standing, walking and running. I have found a whole community of people who have been there, and share their experiences to help you when you feel alone.

Let me finally say that it has given me to opportunity to realize how wonderful, loving and caring my family is. Who read about my moment of grief and reached out to see how I was. To reinforce their love and confidence in my ability to be a mother of a son with spina bifida.

So today I celebrate the gift of spina bifida. That I have been given many little gifts with this diagnosis that I didn’t know that I needed, but that I am not willing to give up. I do have moments of grief and negativity but these are more than balanced by gifts of clarity and love, moments of joy, realization of faith and appreciation of my many blessings.

OK hand me a tissue.

A moment of grief

I caught a glimpse today. I tried not to, I tried to ignore it, but it still happened.

Nickolas, my happy and adorable child as a 10 month old, if at 28 days gestation his spine had closed. The glimpse came, out of the blue, when I was cathing him. We had just spent time outside playing, Katheryn was downstairs getting into who knows what. And the picture came.

Diaper changes without spina bifida, chasing a crawling infant, spending time relaxing and enjoying ourselves without appointments and forums and blogs, without scars and tubes and assistant devices. Yes the tears started flowing. Because if something had been different on that 28th day, then our life would have a completely different turn. I would still have my gorgeous and wonderful son, he would just be different, easier, more carefree; but he would still be Nickolas.

I wonder sometimes if parents of children with different diagnosis feel the same. Down syndrome, cystic fibrosis are genetic, something didn't happen during development they were created that way. So I feel guilty about what happened on that 28th day. Did I do something? Did I miss a pill? Drink too much tea? Have a hot bath or shower? Any of those things that they think might have caused that little bump in the road of development.

Of course I feel guilty even thinking these things. (And I love the forums and especially the blogs I read). And most days I truly believe that I am right where I am supposed to be. That things have worked out exactly how they are always supposed to be. I just didn't think that today, today I caught an image of something different, something that seems easier and more carefree.

I have a book called 'A Different Kind of Perfect' that has stories of parents of children with special needs. One of the chapters deals with grief. Grieving the child that you imagined when you found out you were pregnant.  I guess that this is left over grief. I wonder if it will ever go away, or if it will just fade into the background as I come to terms with our life. I actually had thought I'd come to terms with everything.

But while today brought a surprise need to reach for the tissues, I know that tomorrow I will once again bask in the joys of being the mother of two of the best children in the world! Just the way they are.

Sandbox Fun!

To enjoy the last full day of summer, we went outside and played in the sandbox. This was Nick's first time in the sandbox actually playing with Katheryn. He is sitting much better independently so I can leave him to play without holding him.

He liked outside the box much better than inside, and reaching in the play with the sand. And Katheryn really liked covering him with sand. I found a bunch in his ear! I had to make extra sure that there wasn't any sand left in between his toes.

But I think they had fun!

Your wish is my command...

A couple days ago I blogged about wanting the feeling of Nickolas tugging at my jeans (you can read the post here). Well Nickolas was nice enough to comply. I guess I should have said that I wanted to be standing, or at least in,  my jeans when it happened!

Changes

Changes are coming. And they are supposed to be good.
We got a call yesterday saying that our name had come up for the wait list at Grandview (our local kids rehab centre). This is 15 minutes away from us, as opposed to the 1 - 1.5 hour drive to Bloorview where the spina bifida clinic is. This is the drive that I have been making at least every week to go to weekly physio appointments.

It's worth it, I really like Kim, our physio (I think I might have written about her before). And yesterday we were even talking about AFO's [ankle foot orthodics - braces for the ankle and foot] and a standing frame.  

Kim and I have discussed that there are various beliefs about a standing frame. Either waiting until children are able to stand, or helping them to stand to give them the feeling of being upright and the social connotations associated with being able to 'stand'. I like the idea of introducing a standing frame earlier so that Nickolas is not always lying down, being held or sitting. We discussed starting the process of measuring for AFO's before I go back to work in 2 months.

I am worried that this change, being called up from our 8 month waiting list is now putting this in jeopardy. We were getting things started, from my perspective giving Nickolas some independence and now this is being threatened. And I don't like it!

At the same time I recognize that maybe it isn't being threatened. Maybe the PT's at Grandview will be on the same page. Maybe transition will be easy and seamless.

We go on Monday to see PT [physiotherapy] and OT [occupational therapy] at Grandview. So I guess I have to wait until then to see how things will progress.

In the meantime, this is the newest thing that Nickolas has done.

It might not seem like a big thing, but he is rolling over to something and then reaching to get a toy - a big deal! And he's starting to attempt to investigate obstacles.

Oh yeah, and today was a better day. {if you have no idea what I'm talking about - see yesterday's post}