I was not ready for this…

I was not ready for this…I was not ready for this. I knew this day was coming, but it was a day that I have put off for 18 months. Elizabeth’s pediatrician in Austin had given us a prescription for a transport stroller and we never used it. I could not bring myself to do it. Then we moved to California and Elizabeth is getting taller and heavier. She is mobile, very mobile, but she can not walk for as long as a typically developing 5 year old. She tires very easily. She is 43 inches tall and is literally dragging her feet in the “baby” stroller.

We have a lot of travel coming in the next year as Elizabeth was preliminarily chosen to participate in the IGF-1 clinical trial for treatment of rett syndrome at Boston Children’s Hospital. We do her screening appt on July 14 and as long as she still fits the criteria, she will start the same week. We will spend 2 weeks in the Boston area, which her Grandparents and Aunties and Uncles are VERY excited about! We may even be able to sneak in a weekend trip to our families cottage in Rockland, Maine…definately one of my happy places.
Anyway, I digressed…So, a few weeks ago I called Eliabeth’s pediatrician here and she gave me the prescription for a “specialized transport stroller” to leave it open for the technician/ customer service rep/sales person to figure out what was best for her. I asked some local families who they use in the south bay area and called them and made an appt. Wooh, that was hard. It is not something that any parent should have to do, but today was the day. The rep called me this morning to learn more about Elizabeth and her needs. He then came out this afternoon and showed us 2 Convaid strollers. It was pretty painless, but as both strollers were up in my living room, I said to the rep “I am SO not ready for this” and he said “I know, let’s see what Elizabeth likes”. And Elizabeth sat in both strollers and almost fell asleep in one so that is the one we went with;) Pretty painless. A few measurements. A few options, like transit ready. That was a tough one. Will we ever use it? Who knows, we went back and forth and back and forth and then went for it. It helped that Elziabeth’s ABA therapist was here so she helped with the decision. I did let Elizabeth pick it, but we hid the pink from her. Pink is just too much…Per the rep, it is bright and bold and very pink! haha. So we showed her black, blue, forest green, purple, and red. The only 2 colors she responded to were black and purple. She consistently looked at me and smiled with the purple…so we went purple. I was trying to avoid the purple b/c it is my favorite color and the Rett awareness color. Furthermore, I know she prefers pink but I could not do it…I just could not and purple is the next best color right?!
It was not an easy week and I was grouchy all week. I was told to blame it on the lunar eclipse as it wasn’t just me that was off….and then today happened and a friend sent me flowers that arrived at the same time we were discussing the stroller options – perfect timing I would say. A weight is lifted off my shoulders until her new ride arrives. Till then we can still live in our fairytale land of no “specialized transport stroller”, but it really will help with her quality of life so that she can enjoy trips rather than struggle because she has walked too much.

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    One Response to I was not ready for this…

    1. sara waldrip says:

      Thank you for sharing what you are going through. This will be good for Lizzie and easier on you but my heart hurts thinking about it too. Can we have some art added to it (maybe a bday gift from Aunt Sara?). We are here for you anytime and are only 4 hours away by plane. Happy Easter my love and virtual hugs and kisses from the Waldrip Girls. I miss Lizzie and Charlies kisses. Somehow, Lizzie knows when i’m in pain and gives me so much extra love and affection. I feel bad today and wish I could of come see my sweetheart. I’m excited to stay with them in May!

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