Cerebral Palsy, Friendship, Our Son, Parenthood

Our Club

Royal Botanical Gardens

I read a lot. I mean A LOT. About cerebral palsy. I have four book marked groups on my computer under CP: therapy, blogs, equipment, speech and language, and misc. I open every new blog link I see in my CP moms yahoo group to learn about their child and experience with CP. I look for similarities. I look for differences. I look to learn. I have met two wonderful families in this way who have been the most supportive people in the CP community for me. I have a lot of friends and family that offer up support from afar; but these women, they know what it’s like to be me in ways that no one else does. And I am so thankful for them! I read about every new therapy, every new piece of equipment. I read about every organization. I read about everything I do not know to know it. I, like other parents out there in this community, want to know it all so I can do it all.

We belong to the same club. It’s not a club that you want to belong too. You aren’t waiting for an invitation. But suddenly, you find yourself in this club. With these amazing parents and their children, just as amazing. And you are not unhappy being in this club. It becomes a part of you and you are thankful for it. You are happy to know these people. And you are happy you are in this club together. One of the moms I met in Melbourne and I had this conversation about our  special club. I met two moms who I mention occasionally on my blog, Dianne and Bron. Their first born sons were born in similar circumstances to Sebastian and they have a similar type of CP as Sebastian. Finding them was a Godsend.

When we were in Melbourne we were able to meet up with them on a few occasions. Spending time with them and their families was one of the highlights of the trip for me. Their sons are 5 years old. They have been through what I am going through and then some. I was nervous to meet them. I had read their blogs. I had looked at their pictures. What would it be like? What would their sons be like? As soon as we met at the Royal Botanical Gardens I was greeted with smiles and warm hugs. There was no trial period. I was accepted immediately. I was a member of the club. Just as we are. That’s just the way it is.

Meeting them was good for me on so many levels. It was good for me to spend time with other moms who have similar experiences as myself. Who could offer me advice, a listening ear, laughter and hope. When I met their sons I saw the glimmer in their eyes just as I had seen it so many times in photos. Their sweet and energetic personalities shined before me.

When you have a child that is ‘not typically developing’ there are different books to read. You can’t follow the ‘What to Expect the First Year, or in the Toddler Years’ books that everyone has. When I got Sebastian’s second diagnosis of dystonic CP, I filled my book shelf with books about cerebral palsy. I have read one. I looked through the others and felt a lot of it didn’t apply to us. Not yet and maybe not ever. Every child is different. But in meeting D and B’s son’s I saw similarities between Sebastian in both of them. And that, for me, was eye opening. It was eye opening because it helped me realize that there are some things that Sebastian won’t grow out of because it is a part of his CP. Him being my first born, I have nothing to compare his development to. And that’s ok, because I don’t want to compare him to anyone.

I read all of these sites. I meet these moms. I get to know them and their children. I am a part of this club. We have children with disabilities. I see that word a lot in everything I read. And it’s seems so foreign to me. Disability. My son has a disability. It’s another new word to my vocabulary because I don’t see it all the time. You see it. Others who don’t know Sebastian may see it. You may see what he can’t do. But I only see what he does. What he can do. I know that he does things differently. I know that our daily routine is much different from other daily routines of moms with ‘typically developing’ toddlers. I know he has special needs and some things are more challenging than others. But I don’t see it as I can’t but as I am. I can. I will. We do. Together. That’s on a good day, which is most of the time. On a bad day, well that’s another story.

Advertisements

4 thoughts on “Our Club”

  1. Kara, what a beautiful post for the way it was written and emotion expressed. I am in tears as I too never wanted to be part of this club but am so glad I am most days with the support I recieve and can share. Come back soon, we miss you! not a day goes by without Cooper talking about his friend Seb and of course how much he loves Ali! 🙂 Bron xoxoxo thankyou for seeing coops how we do.

    Like

  2. Oh Kara,
    What beautiful words!
    I read your post a week ago but haven’t been able to get back to comment (it’s easier to read blogs one handed while you feed a baby than it is to write!) but I have been reflecting on your words often.
    It was a pleasure to meet you and like Bron I hope you’re able to come back to Melbourne soon. We look forward to meeting again and watching Seb blossom into the gorgeous big boy that he will become.
    You’re right that it is a strange sort of ‘club’ that throws together people who under perfect circumstances would probably never meet. BUT the connections that we’ve made since S was born have been the most empowering and liberating part of having a child with a disability. That sense of belonging and understanding is just so valuable.
    Thanks again for sharing this wonderful post. AND come back to Melbourne soon!
    Dianne
    xo

    Like

  3. It is a club that I wished I was not a part of but it is a club that gives me support to deal with things that I cannot change. It is a club where I learn so much from other mothers who go through what we go through.
    I recently enrolled Elizabeth in an adapative dance class and what I immediately noticed was the warm welcome the parents gave us, they did not have their heads down avoiding contact like in her gymnatics, there was no poor child whispering there was immediate acceptance.
    I have not had much luck finding children with dystonia simialr to Elizabeth even with the reading and researching I do and the fact that I work in a center for children with disabilities. Dystonia is a very difficult diagnosis and I find lately is a battle that becomes difficult as Elizabeth grows.
    I love the new haircut he looks much older.

    Like

Comments are closed.