Saturday, May 30, 2009

What would you miss?

What would you miss the most if you could not take your children outside when ever you wanted to? Would you miss the walks, the playing in the yard, the beach, the picnics,or being able to pick up and meet friends at Disney when ever. The other day I was talking to another mother of a child with TTD and we both agreed that this awful illness stinks no matter what but one of the hardest things is having to watch your child watch the world from a window. Watch the children that walk by, watch his sister playing in the backyard, or just watching life pass him by. This puts such huge limits on us as a family. Yes, we push the limits every once in and while. We slather him in sun screen, put his UV clothing on, and put his cooling vest on BUT we can not do this often. It is really like a game of Russian rullet. One day Collin might handle it just fine and the next time he might start seizing, blister, burn, or just get sick. Today a mother asked if I was putting Regan in the pre-k summer program. I explained to her that I didn't want to put her in summer school because that would be the only time that I would have to take Regan to the beach or play while Collin is in summer school. I had to explain to her about Collin and all of the things that can happen to him during the summer when it is hot and and UV is high. She looked at me with the saddest look. She told me all of the wonderful things that she loves doing with her family in the sun in the summer. She said she couldn't imagine giving any of it up. Collin has always been this way so this is nothing new and we are very used to it, doesn't make it any easier, but we are used to it. Even when Collin is not with us Regan will look for the shade. It is very much part of him, part of us as a family. I have to say that one of the things that I wish I could have would be a beautiful, sunny, warm day at the beach with both of my children.

What would you miss if you had to hide from the sun this summer??


Amy said...

I'm so sorry that you and your family have to deal with the limits the TTD has placed on Collin. I can't imagine how terrible it must be to always have to hide from the sun, just to keep your child from being in pain or from having seizures. We experience just a taste of that since Lily has temp. regulation problems that affect her when the temps get to a certain point here in Texas. We're looking into a cooling vest because it makes me sad to think that now that she is finally wanting to play on the playground at school with other kids, her aide has to stop her every 10 minutes to check her temp and have her sit in the shade for a while drinking cold water to cool down. I know we only have a small, small idea of what Collin has to deal with, but I can sure sympathize with the limits it places on you all. Collin is very blessed to have such loving parents and a sister who always have his best interest in mind, no matter how inconvenient it is for your family. Give Collin and Regan a big hug from us!

Marie said...

You are such a strong person! I was just getting caught up on your blog and wanted to say CONGRATS to Jason for graduating college. That is a tremendous accomplishment especially given all that you and your family have been through. Keep it up, it's all worth it in the end:)

erinTphotography said...

How neat, to come across your blog. First of all, to answer your question, I have a Canon 40D and a Rebel XT (I have only had the 40D for a few months though). The most recent image of my daughter on my blog, was taken with my old Rebel XT that I have had for YEARS!!! You have some beautiful pictures yourself. And furthermore, I am very touched to read about your trials and joys with your family. And to answer your question, what would you do???? I would do what you do. I would set up a shade canopy at the beach, find the most beautiful park filled with hundreds of shade trees. I would continue to live my life and enjoy the beautiful world we've been given, with the best precautions possible! Sounds like you are doing an awesome job to me.