My Oprah Breakdown

I enjoy watching Oprah but today I had quite the emotional breakdown during today's episode. I don't get to watch it very often. I record it regularly but I never seem to find the time to watch. Today I happened to be home folding laundry while the kids were playing and I was able to tune in. Today's episode stopped me in my tracks. In 1987, AIDS patient Mike Sisco jumped into a pool and his town erupted. Oprah hosted a town hall discussion 23 years ago and in today's episode she returned to Williamsburg, West Virgina to interview some of those involved. The subject matter itself was riveting. So much has changed in 23 years. There was so much anger and fear about AIDS then. Here's the link with information about the episode: Oprah Returns to Williamson

At one point they had a doctor share information about patients living with AIDS and they shared that the average life span of someone with AIDS in 1987 was 18 months and now 23 years later the average life span of someone living with AIDS is 22 and a half years. As soon as I heard that everything seemed to snap. AIDS is being cured in my lifetime. The average life expectancy for someone diagnosed with AIDS today is years LONGER than the lifespan of someone with Sanfilippo syndrome. I have been rolling that thought around in my head all day long. Someone with AIDS will likely live longer than my daughter.

I absolutely believe that they will find a cure for AIDS in my lifetime, that thought doesn't seem far fetched to me. I don't have nearly the same confidence in a cure for Sanfilippo syndrome. I do have hope. But I'm also completely overwhelmed by feelings of inadequacy, I should be doing more, raising more awareness, talking to more doctors, fighting for more research. Instead I spent most of the afternoon cuddling and playing with Olivia. I'm just too overwhelmed and I don't know where to start or what I should do. I am so lost tonight.

Decompression

This is what happens when we get home after 5 plus hours of doctors appointments, errands, and christmas shopping! I'm pretty sure that tag is their all time favorite game to play with each other.

Red-Handed

Peter was helping me with some holiday baking. The phone rang and I walked away for a second and returned to find this.....

Christmas Wishes

Peter and Olivia love the Christmas decorations. Peter has taken to saying goodnight to all the ornaments on the tree, "Goodnight Moose", "Goodnight Cracker" (for the Nutcracker), "Goodnight Mickey". We try and limit it to 3 each night so we're not standing in front of the tree for hours. Olivia loves to look at the lights and while she has pulled a few ornaments off the tree she has not broken any and she hasn't pulled the tree down. Both kids love to stare at the nativity but have yet to touch it which is amazing to me since it's right at eye level on the dinning room table. They do love to add to the nativity and I find choo choo trains and books and suffed animals carefully added to the scene. Neither one of them have any clue about who Santa is but Peter can say Baby SEESUS (pronounced by the rest of us as Jesus).

When I ask Peter what he wants for Christmas he says that he wants a choo choo and a snack. It's not like I don't feed him! He is really into trains right now.

Olivia likes to play with simple toys (think 12 month range), especially those that make music and have lights but absolutely nothing with small parts. She also continues to love looking at board books. A friend shared this article, 10 Considerations when Buying Toys for Children with Disabilities. Just when I think I'm settling into this role of being a mom of a child with special needs I come across something like this article and its like a slap in the face. I'm not a normal mom, my child can't have normal toys, there are so many things to think about. I cannot believe that this is our normal now.