The short bus

This is one of the things that I found challenging last year. Any time I thought about school, there is was... front and centre.
My son will be riding the 'short bus'.
He will be identified before he even gets off the bus.
As he rides through the neighborhood.

Just this weekend I was watching a movie that brought it all up again.
One of the "funny" insulting lines that one character called another. "Hey short-bus"
Because, you know, it is really witty to make fun of children who are different.

And then almost the very next day one of the my co-workers brought up 'the short bus'.
Her daughter had asked why she had to ride a big bus with only 5 or 6 other kids, why couldn't she ride in the small buses? Wouldn't it be more energy efficient?
And my co-worker realized that she didn't know what the 'short bus' was.

And I have noticed a number of buses through the neighborhood.
It is nice to know that there are kids who are growing up not knowing this derogatory term.

So the anger I felt at hearing the term on a movie, made me feel better that it might hopefully be only my own generation who see this as negative.
And kids these day may just see it as environmentally friendly.

My own feelings about the 'short bus' I continue to work with.
It is here, it is needed, Nickolas loves riding the bus, the bus driver is fantastic. So I pretty  much just need to get over it.
And if people want to make judgements based on what kind of vehicle Nick arrives in, then I probably don't want to know them anyways.
Nick loves his 'short bus' and it meets all of our needs.

 

I will have to deal with my concern with busing next year when he is with Katheryn. But that is a whole year from now!

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.