Last week was rough. I spent most of it stressing out about getting Lucy's therapies increased as much as I could...banging my head against the wall because the only pt able to come out to the house is a fellow I already fired because he has a terrible attitude. DRMC said we could go there for aquatic therapy on Monday and then when I called on Wednesday to see if the doctor had faxed the order yet a different lady said we couldn't because Lucy isn't potty trained. I go the same answer from a physical therapy place in State College. Easter Seals in Altoona will take her...but it's in Altoona which is pretty far, especially in the winter.
I started this blog in my head a few weeks ago and haven't gotten around to it until now. I first thought about it because of the negative, devastating way in which Dr. Coffman presented Rett Syndrome to us. And because we didn't have the knowledge that we assumed he did, and we are not pediatric neurologists, we believed him. That's not to say that this diagnosis is not still devastating to us...it is. Whether or not Lu will able to walk still remains to be seen, and she can't talk to us in the usual way...and a million other things that break my heart. But maybe not quite so horrific as the doctor made it out to be. And then on the flip side we meet Dr. Sasha who says maybe there will be a cure in Lucy's lifetime, and maybe early in her life at that! And then I say, damn her for getting my hopes up! But just like we assumed Dr. Coffman had the correct information, we especially assume that she does also because she is a very respected, well-known professnal in the world of Rett Syndrome, and so we are at her mercy as well.
98% of the people I have had to try to talk to on the phone, to obtain services, ask questions, get tests ordered..whatever, could not give two shits about me or my daughter. Why they work in a "helping" profession is beyond me, but it is so frustrating to also be at the their mercy in trying to get things accomplished. In addition to a general apathy that seems to prevail in these employees, nobody has heard of Rett Syndrome and therefore especially do not care about why I need their help. Rett syndrome, in my opinion, is no less devastating or serious than say, cancer, muscular dystrophy, cerebral palsy, etc., but it is nothing to people because they don't know what it is. It is extremely difficult to relay my urgency through the phone, to people who just want to get their time in and go home.
I spent most of last week saying, "I just want to get Lucy what she needs! That's all I freaking want!" Unfortunately, the people who care the most that I accomish that goal have no control or authority, and the people that could help, don't. We are lucky to have some super wonderful therapists that take great care of Lu, and we have a pediatrician who knows very little about Rett, but does pretty much anything I ask of her to help me out, and is willing to learn about it. All I want is for her to have the best opportunities and help possible and since we live in a rural area, we run into some difficulties obtaining those services. But they are around I think, and it seems that as this journey unfolds, I just have to keep getting more assertive, and more aggressive to get my baby what she needs. This is pretty far outside of my comfort zone, but I really think that my "comfort zone" is not really anything that actually exists in any substantial degree at this point, which is fine.
Frustrating as all that obviously has to be for you now, just keep plugging away, pounding on those doors, dialing phone numbers, etc. Talk till you are blue in the face as well, but somewhere along the way, you will encounter someone who has a bit of a crack in their own veneer and knows someone who knows someone or something, or has information about a program or whatever, and things will open up a bit for you. More importantly then, open up for LU!
ReplyDeleteIt does seem to be the way of the world -all too often -that when there is something available that is much needed, often the path to get to that is blocked or certainly seems to be that anyway.
Perseverance wins the game so bolster up on that attribute and know you are doing the right thing for your daughter -and your family then too.
By the way -do you know Krista Williams in Kylertown -she has a daughter (Leah) who has a lot of severe issues and might actually be able to give you some leads in the therapies you need/want for Lu. Just a thought. (Her husband is Brandon Williams -in case you don't know them, don't have their phone number, etc.)