Life with Ella and Emerson

This is a blog dedicated to my beautiful daughters, Ella and Emerson. Emerson was diagnosed with a rare, genetic disorder called Williams Syndrome when she was 5 months old.

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Location: Wisconsin, United States

Thursday, June 12, 2008

Future Planning

Ella and Emerson had their first haircuts this month. Yes, Ella is four years old and this was her "official" first haircut. I have always just trimmed up the girls hair and it has been fine. Well, Emerson's hair was getting beyond what I can control. She literally has corkscrews coming out of every angle of her head.
It can be adorable a lot of the time, but on her bad hair days it looks like dread locks gone wrong. At the salon, I kept asking her to cut more and more of Emerson's hair and in the end, just as I suspected, you can't tell she got her hair cut.

I am working 3 shifts per month at the hospital and am enjoying it. I love being able to stay home with the girls, but I've missed being a Speech Therapist. This is just enough to keep me in the field. Anyway, I had an interesting experience last weekend. I was working with a woman in her 80s who had a stroke when in walked her 50 some year old daughter who I instantly recognized as having WS. The 80 year old mom was clearly upset that she was there because no one was with her. She starts worrying and telling the daughter that she shouldn't come to the hospital on her own and how in the world did she get there. The daughter responded, "Mom, I walked, I'm not cripple." I chatted with both mom and daughter for a bit and then another daughter arrived and took daughter with ?WS home. I was obviously curious and started asking the mom questions about her daughter and the type of care they give her. The mom was very worried about her daughter and her elderly husband and what was going to happen. Who was going to care for her daughter? I ended up finding out that the daughter did not have a diagnosis, but was always just labeled MR. I left her room, not feeling nervous, not devastated, not sad, not any other emotion that I thought I may have meeting someone giving me a possible glimpse of my future. It just made me think that Brian and I just really have to make sure we have our sh** together. That's literally the first thought that popped into my head. We are going to have to make sure that we have everything in place for our future. We will have to save, save, save and plan, plan, plan. I have every belief right now that Emerson is going to do well and is going to be able to lead an independent life. I just don't want to be caught flat footed if that isn't in her future. I really think I had this experience to remind me that while the day to day is going well, the future does need to be thought of. I want to live my day to day with the hope and optimism that Emerson is going to be terrific and surprise us all, yet plan for the future starting today that there is a possiblity that she won't be as independent and well off as we hoped for. I really think that this meeting happened for a reason. The nurse told me that the mother had been in the hospital for 3 weeks and that this 5 minute pop-in by the daughter has been her only visit. I was in that room for a reason.