On Fridays, Sadie and I go to the Foundation for Blind Children where they have an infant program. It's 2 hours, from 9-11. For the first hour they set up stations for the kids to experience different things with their hands, there's usually a station with a story, something sensory, etc. then they do music therapy all together in a circle. The second hour the parents get to break off and have a meeting by themselves. This is really why I go.
Sometimes in the parent meeting there are guest speakers, sometimes we learn something related to a vision impairment, sometimes we just talk. Today, we talked. As we went around the table and told about our children and their diagnosis, we were supposed to share something we like about parent meetings and something we'd like to see more of (or less of). It was mentioned many times that we'd like to have some more time to just talk to each other. The thing about Friday mornings is that every minute is used for something. So, if want to just talk to Lara about how we found a respite person, I'd have to stand outside at the end, while both of us hold our children (mine usually screaming) and have the conversation there. It's not ideal.
Once this was brought up (by me, of course), lots of ideas were thrown out: having a shorter music time and a longer meeting, going until 11:15, starting a parent resource group on Facebook, or having a potluck day on a Saturday or something where we can come and just hang out and let our kids play. This last idea is what I want to talk about.
I love coming to The Foundation for Blind Children because there is so much diversity among children. Some only have a visual impairment and are otherwise developing normally, others are like Sadie and have multiple things going on, which usually stem from some kind of birth trauma. Going there was the first time I had really had the opportunity to be around other children with CP, to see how they acted, what their development was like, and to talk to their parents. I came looking for hope, and it's what I find every week when I go. Because Sadie is one of the youngest children who attend, I have the advantage of hearing other parents say, "if we had started when he/she was Sadie's age..." I can see Maddie at 20 months using her hands more and rolling, I can see Ceagan, at 7 months sitting unassisted, and I can see Camilla at 21 months participating in music therapy. And these give me hope for Sadie. But I also see Abbe's mom smiling and playing with her during centers. And I hear Aaliyah's mom talk aout all the new therapy equipment they just got that they're excited to try. I see the joy and love Camilla's mom showers onto everybody because Camilla is her SECOND kid who's been through the program. And these moms give me hope for myself.
Once it was brought up that we could all get together outside of Friday mornings and let our kids play while we talk, one mom spoke up with something I never expected to hear. She said she'd love to do something like this, but sometimes she feels bad that her child's only impairment is visual. She made it clear that nobody has ever made her feel this way, just sometimes she looks at her otherwise perfectly healthy, normal child and is sad for those of us dealing with multiple diagnoses. And after a number of other moms spoke about this and gave their perspectives, I put in my two cents worth.
I told them that I've had my share of jealousy, especially when I go to the grocery store, but that I have never felt jealous of anybody at Friday program. I told them that I love hearing about the things their children are doing or the great things the doctor told them, and it doesn't feel like they're rubbing anything in, because someday I hope it's me talking about those same great things. When I hear it, it gives me hope because I think that if your child can do it, so can mine! I told them that despite your childs impairment, we're all in the same "club" and we've all got our issues to deal with whether it's just a visual impairment or it's multiple life threatening diagnoses. There was a new mom and baby this morning and I spent much of music watching them (because Sadie and I were in the rocking chair napping instead of singing) and I was amazed at how much fun she was having and how well she was doing, and cute she is! And after learning her story that she is a surviving twin, born at 24 weeks with severe brain hemorrhaging, I was even more impressed. But she had a feeding tube, so I know it isn't all rainbows and unicorns in their lives either, so I'm not jealous...not even one bit.
Here's what it comes down to: None of us know what the future holds for our children whether they are perfectly normal and healthy or struggle with severe disabilities. It's just that those of us who have children with special needs might wear our worry more on the outside where everyone else can see it. As parents, we have to walk each day by faith, knowing that God has our children in His hands. And we have to know that no matter what our child may or may not be, it's still our responsibility to be the best parents we can. God gave us to our children because He knew we'd be the perfect parents for them. I also think that whatever the future holds, it's important to remember the good in our own child and instead of focusing on the car screaming and the constant bouncing. So I think about that Sadie can suck on a pacifier, she can sleep all night, and she has a beautiful smile that can light up a room. And that's really why I love the Friday program, because I see ALL of us parents doing exactly that.