Day Four

Photos: Chloe's getting used to the head wrap!
Chloe & Sasha
Coming Undone
All cleaned up!
Chloe & one of the many cows at TCH

What a day this was! Chloe was awakened by a voice over a loud speaker at 6:30am. "Chloe, open your eyes. It is time to wake up. Chloe, you have to wake up now." Remember, she got to bed around 10pm and probably didn't sleep well.

After getting up & dressed, etc., we went for a walk around the hospital to get mommy a few diet pepsis. When we got back, breakfast wasn't there yet and it was time for Chloe's first nap. So, she laid down and we were just about asleep when they turned all of the bright lights back on. After that nap, we watched a show, played in the water at the sink, etc. Soon, it was time for another nap. I talked with Dianne about other kids with PTLS and it was very insightful. So far, Chloe has none of the other health problems that these kids have (other than losing a lot weight after birth & having some difficulty with swallowing & far-sightedness). She has normal kidneys, no curvature of the spine, no heart defects, no siezures, etc. - none of the big stuff anyway.

After that nap, Dr. Potocki showed up to talk with me. We all hung out til Chloe's next nap. At that point, Dr. Potocki & I went out to the hall where she began to show me her slide presentation on PTLS. We got to slide 6 (of 64 or so) and it was a photo of a teen-age girl and one of the bullets said, "Mentally Retarded". I asked why it said that and Dr. Potocki told me of all of the PTLS kids seen to date, only one was not considered "mentally retarded". WOW. In my mind, there is a big difference between developmentally delayed & mentally retarded. I was in shock - complete shock. She proceeded to tell me that you cannot officially label someone as mentally retarded until they are old enough to take a certain IQ test or something (she sort of lost me for a few minutes). I asked her if Chloe would know that she was "different" or "retarded" and that is when I completely lost it. I don't remember crying so hard in my entire life. I actually broke blood vessels under my eyes. I had never considered the fact that Chloe might really be retarded. I had mentioned mild mental retardation to Joe & Carrie (my sister) but it was more of a "in some ways, Chloe might be described as mildly retarded if you didn't know her or if you didn't know what she had". Retarded - what a harsh word. The girl who might get picked on, the child who rides the short bus & attends special classes. This is the girl who doesn't get to get her driver's license or get asked to the prom - the one whose daddy probably won't get to walk her down the aisle. This is a big thing! It was real for the very first time because someone who knew more kids with PTLS than anyone else in the world had said it. Dr. Potocki of Potocki-Lupski syndrome said that these kids are mentally retarded. I couldn't pull myself together.

At that moment, Dr. Powell walked around the corner to come see how I was doing. Thank God for small miracles. They put her and I in a sleep study room and we talked for over 2 hours. We talked about resources and support groups and planning for Chloe's future. Chances are she will live longer than us and who takes care of adult mentally retarded children? Where do they live? Who supports them? How do we ensure that she has the best care possible and that people are always kind to her when we are gone? You don't ask your sister or your friend or your brother to do that. What do you do? How do I come home & start this process? I must admit that I am scared to death. I have never been more scared than I am of the fact that this is all a reality. A shocking, painful, rip out your heart, saddest, scariest reality. Maybe for some of you it might not be, maybe you think it might not be, maybe it is just the newness of it. Perhaps some of you are losing any respect you may have had for me. If so, that's okay. We all cope differently and if that is the case, I don't think you would be the support I need right now.

I am so thankful to have had Dr. Powell tell me that we have to grieve and be sad & mad and all of those things because what we think of when we have children is a real thing - a real dream. It's the hopes you have for your family & for your child's happiness and ...all of the changes. It doesn't mean it is better or worse but it does mean that it is different. A loss of one thing but gaining something else - we have to grieve the loss before we can accept the gain.

Dr. Powell also said that maybe we should begin talking to Quinn about Chloe's special needs. Quinn was talking the other day about the special needs camp we all went to. I asked him if he knew what special needs meant and as I suspected, he said "no". I told him that Chloe was special - that we had to take her to therapists to help her talk and to get her muscles to work right, etc. Most kids don't have to do those things. He added a few comments about therapies & what Chloe was learning. I also told him that it meant that he was extra special because not very many big brothers get to have baby sisters with special needs. He liked that. I am okay with leaving it there for a little while. We'll see what Joe (my personal clinical psychologist & husband) has to say about it though.

I asked Dr. Powell if Chloe would know she was "mentally retarded" and how we would deal with that. She said, "She might know she is different and she might ask you about it some day." She said to tell her, "You are different and that is what I love the most about you. You are special and you will always be my baby girl. I am so lucky."

She is different. Is different better or worse? I will let you decide after you read the next couple things.

On our last visit to Denver Children's Hospital, there was a guy in a wheel chair who was clearly mentally challenged (retarded or crazy). He was dirty and smelled of urine. Chloe walked right up to him and put her hands on his lap and said, "Hi'. Can you imagine how long it might have been since someone did that to that man?

As people come into our room or the elevator, Chloe says "hi" to all of them (& she keeps saying it until they acknowledge her or leave). She cannot say much but she tells everyone she sees "hi." I overheard one nurse telling Chloe, "I just love your little personality."

When I was talking with Dr. Powell today, Dr. Potocki & Dianne took Chloe to video tape her gait. Tonight, when I was talking with Dr. Potocki she told me that as they walked through the hall, Chloe said hi to everyone. She said it didn't matter if they were black, white, hispanic, or indian. It didn't matter if they were old or young, walking or in a wheelchair. It didn't matter if their heads were wrapped in bandages or they had tubes coming out all over them. She just said, "hi". By this time, Dr. Potocki was crying too. Don't you wish that more people were like Chloe sometimes?

What do you think? Better or worse? Maybe just different...right?

Thanks for "listening".
Love,

Amy

p.s. At some point, I will tell you more about what Dr. Powell recommended for Chloe's current intervention plan. School, therapy, early vs. later treatment, etc. Right now I am physically & emotionally exhausted. I cannot wait to get home to see Joe & Quinn!! It's better when we are all together :)