Me and A frog in a pot

Ok so God's really smart. Duh I know but He is. We are on this journey that we really didn't want to be on but instead of throwing us in head first God's been easing us in the pool bit by bit.

Tomorrow Chloe gets fitted for her SMO's foot braces. She also is quickly out growing her walker so her PT (physical therapist) suggested a disablity walker. But after finding out how much the SMO's are going to cost us out of pocket after insurance I'm thinking maybe not.
Thurday or Friday (hopefully) we will hear back from the gentists nurse. At this point I have literally done her job for her, all she has to do is check my work and then call or fax the lab where we get blood drawn and then call me. VIOLA! To think that by Friday we could have the clock ticking on "the wait" would be nice. I also found out that our insurace will pay 100% for all the tests that need  to be done. Praise the Lord.

I have been overwhelmed at the generosity of God's people. Just blown away. Someone paid for me to have a membership to the Angelman Syndrome Foundation. I had thought about joining but had decided that I didn't want to jinx myself so I was waiting till we got the results back. God had other plans. But as I opened and looked at all this information I think it really hit me that I may be the mother of a child with special needs. I know that sounds so stupid but as of right now I haven't really thought about. I have kept busy learning all I can about AS and what our next step is and planning for the steps after that. I haven't allowed myself to think about the nitty gritty of what this could mean for us. I still can't say the word mentally retarded out loud. Or epilepsy.  I guess that's why the Lord has been acclimating me slowly. I feel much like a frog in a pot of water. The shear enormity and permanence is breathtaking frighting. Made all the more complex with the latest generosity of people. Ok here's the deal. I am realizing that not only will this precious little person need me for the rest of her life but that she relies on me to make the right choices not just for now but for ever. Not only that, but if I screw up now... right now... like within the next few months to a year.... if I screw up now, she could literally be screwed for life. I have thought about that with the boys but with them I realize that there will come a point in time where they will become adults and responsible for their actions, their lives and their care and well being.Chloe might not ever get there. So lets say for the sake of argument she does have AS, and I don't get her in speech fast enough or enough sessions period. She is then delayed on her ability to communicate with me and those around her. She then in turn becomes frustrated and acts out. Because you can't discipline her, she gets to where acting out is the norm. Or if I don't do enough PT then she isn't mobile or she is more ataxic that she could be. See what I mean? Now here's were it gets really tricky. People are giving us money for her medical bills. That's wonderful, and well needed. HOWEVER I now feel like I have this added pressure of being a good steward of this money. For example. people are giving us money for Chloe's medical needs but what if my deepest hearts desire  is answered and they do the tests and she doesn't have AS??? that would be GREAT but then do we give the money back? do we apologize for leading them on? Do we apologize for her NOT having AS? Also there is this conference coming up. it's a week long. and it's in Utah, and it's $1,000. BUT it has SO MUCH information!!! Not only would we learn about the latest break through technology, research, and eqipment. We would go into seminars about how it will affect the boys, and our marriage. (which it already has) and  most importantly we would meet parents of other AS kids. Did you know that the ASF states that their are currently only about 1,000 AS kids in the whole US. That to me is amazing. Like my pediatrician said, most peds docs go their whole careers without ever seeing a AS child. So to be able to go to this conference would be like a tall glass of ice water. Oh and the kicker, they only hold this conference every two years.  So if we wait till we get a definitive answer it could be to late to attend and we will be missing out on two years of utilizing the info we would get. However... would that be a colossal waste of the money that people would be giving us?If I send in this scholarship packet I could possibly get a scholarship that would pay for everything minus the airfare to get there. But the food, conference, and hotel would all be covered. I don't know. OR what happens lets say if I go and get overwhelmed (kinda like at our first home school conference just this is much bigger and more technical) and I freak out and have a panic attack and it causes a brain aneurysm and I keel over and die. Yeah ok that was a bit over dramatic, but do you see how I feel totally out of my element?Or what about if we use the money to buy a new radiator for our van that is (Bless it's little GMC heart) handing on with a prayer. Or if we use the money to fix the floor that is about to fall to the ground. You think I'm joking but if you jump in our living room you would swear you were on a trampoline. Or the million other things that need money that isn't there. Plus how do you know what God wants you to do as apposed to what you think is best. I want to do whats best for Chloe. I want to best the best mom for her and I know that's what God has called me to do, because, well He gave her to me. Grrr. at what point in life do you not feel like a kid inside who is just playing house? I'm 29 and have a 7 year old child and I thought by now I would feel more like an adult. I guess I did for a while but all this is just making me feel like I am a scared little girl that needs permission to move. Ok so this is getting really long and depressing. but I want to say that I am so grateful to all my friends who have listened to hours of me rattle on and on and still pick up the phone when I call..
whew... just writing all this feels like I am a doing the wave all by myself.