An Update on Sarah

•Don't think of me as just a blind person. I'm just a person who happens to be blind.

I saw this today on the National Federation of the Blind's website. I cried. I am having a really hard time with Sarah's new vision loss. The little bit that she had left is now gone. She can see shadow's only.

 She cannot put away her own laundry anymore on her own.

She cannot differentiate her clothes to be able to pick out a matching shirt and pants.

 She uses her hand to get around the house because she can no longer get around here.

 She trips over the dog on a regular basis.

She needs help knowing where her food is on her plate.

Her eyes are beginning to look like they are blind.

It's funny because a friend said when I was in Ohio something along the lines that it seemed like such a yo-yo journey. Vision lost, vision gained, vision lost, on & on. And I would agree with that for the first year, but ever since last July it has only been lost. We were desperately trying to hold onto what was left. To hold steady because there was no more vision gained. I wanted her to keep the little bit that made it seem like she could get around okay on her own. The little bit that gave her the autonomy to feel like a seeing person.  That was lost on this last relapse.

I had a really hard week this week. Bob worked A TON and I schlepped the kids to dentist, eye, and doctor appointments. I felt so alone.  I was looking forward to meeting with Sarah's new neurologist. In the end he made me feel like the shittiest mother on the face of the earth. He wanted to know why this procedure hadn't been done and that procedure? Why didn't this doctor regularly do this test? Why was this the diagnosis instead of that?

He was the kind of doctor who would ask a question and then cut you off when you gave him the answer. He did this to all of this patients, not just me. He told me that I didn't seem to be taking Sarah's recent set back seriously. That I seemed too calm for a child losing her vision. He was gruff. He didn't believe me when I told him that I had tried (and Bob too) to get in touch with the School for the Blind, but got no response from them. He tried to get them on the phone himself while we were there to no avail. It was then that he finally believed me.

I spent the next two days feeling that I alone had failed Sarah. That I had caused her blindness by my inaction. I woke up on Friday around 5 am with a splitting headache feeling that I was the sole barer of responsibility for my daughter's disability. That she was doomed a life of sorrow and loss. I snuggled up to Bob and fell back asleep after taking some migraine medicine. I woke up with a sense of peace. Because only I know what I have or have not done for my daughter. Only I know the battles I have fought. Who is this man? This person who knew us for a full 5 minutes before making his accusations. What does he know about our situation? What does he know about how hard I have fought for her? The fact is - he doesn't. He doesn't know shit. He is just a loud pompous doctor - who happens to be the only pediatric neurologist in the city of Las Cruces - and knows it. He was crude and rude and made me feel inferior. Thank God, I remembered dear Eleanor, and knew that this man could not make me feel inferior without my consent. Friday when I woke up from my migraine slumber I took away that consent.

We are going to see him in 2 weeks to get the results of blood work back that Sarah had  which checked to see that her liver is still functioning okay and that the medicine she is on is not destroying it. And I am either going to find another doctor in El Paso after that or he and I are going to have a come to Jesus talk and I am going to tell him how it is. I have been through this dog and pony show for over a year and a half. I will not be bullied by men and women just because they have a Ph.D. or MD after their name. I just won't.

I am sad. Really sad. I go through these two phases. In one phase I am so sad for all that she is losing by not be able to see. She will never see what her husband looks like - should she want to get married. She will never see what her children look like - should she choose to have children. All I can see is loss and hardship.  The other phase that I go through yells at myself. Being blind is not the end of the damn world. There are many people who function very well and are blind. I tell myself that I need to quick acting like such a baby. She is alive. She will lead a very normal and productive life. She will just have to do it differently than we all envisioned. I think of my dear friends whose daughter died at 3 weeks old. I think of how they would give anything to be in my place. Blindness for them would be a walk in the park.  How if I want to know what sadness really is then try losing a child. These two voices in my head - the sad one and the one that chastises me - have been going back and forth in dance all week long.

I have been in constant contact (or trying to be anyway since no one seems to be getting back to me) with the School for the Blind, the National Federation for the Blind, etc...I am doing the best I can to get Sarah the resources that she will need to function as an independent person. It has been very difficult to get people to respond, but I will keep knocking on doors until I get what I am looking for.

Sarah began gymnastics class last week. She has an amazing instructor who has experience with children who are blind and did a great job "showing" Sarah all of the moves she needed to do. She guided her during the whole class. (There are only 3 other people in the class including Elizabeth.) It was amazing to see her learning how to use the parallel bars and rolling on the mat. I was so proud of her. (She had a couple of mishaps the least of which was when Elizabeth walked Sarah into a wall. Oops!)  Her instructor said that of the 4 girls Sarah is the best listener (big surprise there) and that she had to apologize to Sarah for taking time away from her (even though she spend a good majority of the class with Sarah) to correct the other 3 girls behavior. It was amazing and inspiring to watch her. (I teared up - big surprise!) And the smile on her face when it was over was priceless.

So that is where we are at. Onwards and upwards, right?