Worries and Thoughts

I cannot explain the feelings I have with Simon on a daily basis. Most of them are so good. We have the many days of worry but to be blessed to spend every day with him is amazing. He is talking so much and engaging in conversation with all of us. He goes and plays by himself and harrases his sisters to no end and when I walk into the room and he has his sisters doll on the floor and he looks up at me at says "mom playing with baby alive; marnanna (thats what he calls mar) change her" my heart melts and a smile fills me that can last the day. He truly has come so far. After spending 7 months last year in the hospital he has overcome his delays and is doing so well. He is being evaluated by all his services and speech has said he is speaking at a 2 1/2 year old level and she doesn't see any delay at all. We meet with all services next wednesday to see what the next steps will be. One of my biggest challenges these days is to try and figure out what to do when its going to be 89 degrees out today and our son cannot be in the heat as he does not sweat (this will bring up a big ordeal once school starts for him) and he cannot be placed in a pool or run through a sprinkler because we are not sure if the water he ingested would make him sick (I still boil all our water) and I have 2 five year olds who want to go to the pool. What do I do?

We have joined the NFED (National Foundation for Ectodermal Dysplasia - NFED.org) and so we get the newsletter and everytime I receive it I look at it, I read it and I get really sad. I don't know why it has this affect on me because a huge majority of the kids and teenagers are awesome kids who do a great job even though they are not the same as all the other kids they are around. I think about the awareness and how there really isn't any in our area. That we know of no other child and noone around here even knows of Simons ED. It is the disease that is situated in the background just waiting to be attended to but first we have to have an immune system that works. Then we have to work on the ED. I've been told by other NEMO families and even doctors "the ED is not a big deal. He can have dental work (but at what cost financially and emotionally) and we can deal with the fact that he can't sweat (noone sees my 21 month old walk up to my patio door on hot days with a beat red face after 10 minutes, turn to me and say "mama inside too hot". It is heartbreaking when you think he cannot be out having a hot summer day fun day without feeling so uncomfortable that even the fan spray bottle that you use constantly makes him feel any better. To me the ED is a big deal and it makes me wonder how will he really deal with it all as he gets older. This also affects his digestion and eating. These things will never go away. I strongly feel that this rests on myself and Dave. We have to give him the tools he needs to think its not a big deal and that he is like everyone else. That in itself is a full time job emotionally. I sit and wonder how to do that. Noone wants to be different, noone wants to have a child hurt because they are different and so the parent, really soaks up alot of the sadness and fear and encourages their son to surge forward and be the person perhaps they wish they could be. Maybe its not fair to that child but it is what will make that child better able to deal with a cruel society that does not completely accept one if they are not the same as all the others. So this is what keeps me up, along with night feeds and a son who has alot of red bumps right now that are bothersome to him and itchy. The fact that maybe from the immune suppressant being upped he has lost his appetitie, stated to vomit and is a bit testy with his sisters also play into the mix of my late night typing. At any rate I plan to have an awesome weekend with my kids. We are flying solo and missing daddy quite a bit but will reunite soon. My biggest challenge will be to keep them all entertained and busy so they fall exhausted every night and I get some peace. Please pray for Simons donor cells to be strong, high in number and stable for the rest of his long, healthy life and for his skin to calm down. I thought it was from starting him on whole milk (as I've had to wait on this until now) but I"ve stopped it the last two days and no change. I'll just enjoy my sons abliity to repeat every single word that comes out of my mouth and the joy I get seeing the girls and him play and have a good, crazy time. To all of you God Bless and enjoy the long weekend. Tracy (and David) PS Kevin and Dawn I cannot get on your web site to write you but your family is always in our thoughts Love to all of you and Rhys especially