Hope

Listening to John say good bye to Sarah the other day was heart wrenching. I know how much it made her sad, even though she cannot speak. I felt her pain as she silently processed what he was telling her. And it made me cry for her. And there was nothing I could do to fix it for her. She said nothing but I felt her heart break. And there was nothing I could do. He has to live his life. He has to. The needs of each of my children oppose each other, right now. There is hope that someday the wind will change. Hope.

18

Sarah turned 18 yesterday. Last week I had to sign an official paper as her mom for care hours that she receives and suddenly I became aware that this was the last time I would EVER sign something as her guardian. It struck me in that one moment. This was. the. last. time. Ouch! I held the pen suspended in air, hovering over the printed line upon which I was to sign my name and took in the moment. I didn't say anything to the person there, but I felt the significance of it inside myself. Eighteen years of being recognized as the 'legal go-to' person for my Sarah. And that is now no more.
Sarah's brothers will be her guardians after a hearing in 2 days. Of course, they will defer to me for her decisions, of that there is no doubt. They both live out of state but know her so very well, I have no concerns. The reason I am not going to be her guardian is that her medical care is becoming a bit more complicated, I need to be home more now to care fore her, which means I have to work less. Sarah and I can't survive financially on 'less'. But I can be paid by the state to take care of her IF I AM NOT HER GUARDIAN. I tell you, the hoops you have to jump through to keep these kids(adults) living in their own homes. It is not easy.
So that is our family's solution. But for now, this weekend, she has no guardian. She is her own person, who can do whatever she wants. No one has any say but her. If only she understood that, lol. I think she'd run right out and get a tattoo!!
So that's how things stand at the moment. A big birthday with lots of legal ramifications. Up next? Battling with the Social Security Office to get her enrolled and to receive the full amount that she deserves. Stay tuned!! Fun times.

Well hello

It's been a while! 

I left you at the beginning of 2013 and here we are almost halfway through 2014. I have been struggling with how much to share on the internet, in regards to the kids and their privacy. It started to nag at me back in 2013 and that brought this blog to a standstill. Because when I censor myself, my writing does not come easily, rather it is jerky with stops and starts. It kinda sputters. I read what I wrote and don't like it and then I hit the delete button. Thus, no posts.

So here I am posting, but not sure what to say. Maybe I will do some housekeeping and just bring you up to date, one post at a time.  Let's start with Sarah, one of my most favorite subjects. She is doing very well. She is stable medically right now. She did have a hospitalization a few months ago, actually we both did, at the same time! It started with the fact that we got our flu shots like good girls, but still got Influenza A. I came down with it first and Sarah followed a few days later. It was a bear. Lots of coughing, which never bodes well for Sarah. Her coughing spasms became too severe, her airway closed and I had to call 911. So, off we went to the hospital, where Sarah began to improve within a couple of days. However, I came down with a MRSA infection in my leg and was also promptly hospitalized (same floor, different room). At which point my family mobilized. Jimmy came up from DC, John from NJ and my brother from Northern MA. Sister Ali lives in the same town. Long story short, Sarah got to go home first, Jimmy and John stayed home with her until I was discharged. Then I was out of work for a month. My brother and John stayed with us until I could lift Sarah safely and comfortably. I am so blessed to have such a wonderful family.

We have both recovered completely and I am so thankful. Either situation could have been a disaster. After it was all over, Sarah's pediatrician suggested she see 2 specialists at Children's Hospital, for their opinions on this airway problem that Sarah has with any sort of cold/cough. She has struggled with it her whole life, which is why I try so hard to keep her cold-free. Up until this Flu, putting her on steroids has allowed her airway to remain open when she coughed. This time it didn't work. So off we went, one doc was an ENT and one was a pulmonologist. The consensus is that there is nothing to be done at this time. It is not severe enough for a tracheostomy. It is possible that this was a one-time thing because the Flu virus was so strong.  It is also possible that Sarah has upped the ante and this response will be her new normal with every cold. We just don't know which it is.  The ENT said that if it happens to this severe degree the next couple of times she gets a cold, then he will want to put her under and examine the area beneath her larynx, where he suspects the spasms originate. He is pretty sure that he will find nothing out of the ordinary, that it only happens when she has a virus, there is some swelling in that area and the post nasal drip triggers the spasms. Uggh. We shall see. 

Right now I am going through the process off obtaining guardianship for Sarah. She will turn 18 in August. It is a process that takes time and organization. Getting all the ducks in a row is challenging. Hiring an attorney is key for me because I don't want to miss anything important. There are lots of details, of which I find very confusing. I am a medical person, not a legal one, lol. We are slowly getting there. 

Otherwise, nothing else new on the Sarah front. She is eating well, holding onto her weight and seems very happy. She still loves her american girl doll-Emily. She has been introduced to Barbara Streisand and Whitney Houston on DVDs, Barbara is a big hit right now :) She is still riding once a week, when she is well. She really still likes it. 

I'm sure there is more to say about her, but my fingers are tired. Ha!