Friday, April 27, 2012

Ode to Chad

Next month will mark the passing of five years since Chad and I decided to sell our home, quit our jobs, and move to Clarion so he could go to college. I got a notebook out and we sat down and figured out what bills we could eliminate or at least reduce, how we could find a rental (that would accept our three cats), how we would sell our house, when we would move, when he would start and on and on. There was a lot of planning that went into this total life-change. But all of the planning helped to make it go smoothly. We found a dumpy little house across the street from campus...surrounded by other college other college "kids". We were a little out of place, but it didn't matter.

And so, at the tender age of 26, Chad began his college career! We lived off of one income for the first year and a half and then Chad got a ten hour a week work-study job which added a little, but still we basically had one income. In the first year of Chad's college our yearly income decreased by more than half of what it had been the previous year, but we were never hungry, cold, or without anything we needed. I worked two jobs and he got all A's.

Chad changed his major quite a few times before settling on computer science, but then he was happy with his final decision. In May of 2009 I stated that I simply could not bear waiting any longer to have a baby. I told Chad how we would be okay after a baby came along and he agreed. Several months later I was pregnant and then on May 20, 2010, Lucille May entered the world and stole our hearts. Chad and I both decided in her first week of life that we could not stand the idea of sending her to a daycare and so we struggled on for a few months with assistance from various areas so I could stay home and take care of her.

And then, out of nowhere, Chad was told about a wonderful internship opportunity. A professor of his told him about it and then also recommended him to the company, which was a pretty big deal. The company was Minitab, Inc. located in State College. It was a well-paid internship and after a phone interview they gave him the position! That was in October of 2010. By the week before Christmas we had found another (dumpy) rental house, that would accept our cats and again uprooted our whole lives, and moved in. We now lived within my miles of my parents, grandparents, and many other family members.
Over the past year and a half, Chad has worked hard to finish his degree by going to work in State College, and then on some days, leaving work to drive to Clarion, about a two hour drive, to go to class. He will finally graduate in a few weeks! So during these years we have been pretty broke at times, been without health insurance (as we are now), struggled to get through days that were long and hard, and then added our beautiful baby to the family who also came with her own challenges. It has been a long, long process with always the hope of a better job in the end than making steel leaf springs, which was the job Chad left when he went to college. And then this past Tuesday Chad was offered a full-time permanent position at Minitab, Inc. effective June 1st! That night I said, "Oh I can't wait to get my teeth cleaned and to get new glasses!"

When he told me about the offer and showed me his contract I cried and cried. I can't even describe how proud I am of him for all that he has done over these past five years. He has received all A's except for one or two in his classes. He was not 18 and often felt out of place I think and dealt with a great deal of anxiety at times, but he persevered! He impressed his professors and employers with his intelligence, competence, and reliable nature. And now, after all of the sacrifices we have made and the risks we have taken, Chad is gainfully employed at an exceptional company. Because of all that he has done, we will never want for anything and we will be able to give Lucy everything she will ever need. He is our hero and we love him so very much!

Monday, April 9, 2012

At the mercy of "professionals"

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 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.