A Young Lady in the Making

A Young Lady in the Making

A Young Lady in the Making

 

Maya’s therapist said to me that she feels Maya is finally getting used to coordinating her more grown up body. She has been changing so quickly over the last 9 months and it’s been very hard for her to keep up physically and emotionally. Even though it was hard for her, she had become somewhat accustomed to the patterns and quirks of her young body. But with these intense periods of growth, her strategies for managing her day quickly became unreliable.

Maya was already coping with lots of daily frustration. She had to regularly adjust her posture so she wasn’t falling over, she dealt with chronic pain, and worked through intense anger and anxiety from living with an unpredictable body and side-effects of medication. Once her body began to experience multiple shifts (hormones, emotions, muscles and bones, etc.) it felt like we were all wading through unfamiliar chaos. Maya was more frustrated with her increasingly uncooperative body, she was prone to losing her temper and then upset about it, and she had to integrate several medication changes. We went back and forth between disciplining her and feeling grief and sadness for how hard all of this was for her and how powerless we felt.

Looking back, I see how Maya’s changing needs led to a breakdown and reorganization of our household routines and inner resources. It’s been hard to explain to people close to us, even family, what this felt like and why we were unusually drained and temporarily unavailable. We were hibernating and upgrading the way we relate to each other and support Maya. We were helping Maya with her emotions, sorting through our own, watching her lose skills, rebuild them, monitor and adjust her medications and hormones and ordering new equipment and waiting for parts to adjust others.

Like most transitions we have faced since Maya was born, this was a process that we felt unprepared to manage with any kind of grace. I think many parents can relate to this regardless of whether their children have extra needs, but it’s particularly dramatic when your child has complex medical needs. With the help of an excellent psychologist and several doctors we have found great relief, but it took time. Even as we identified new strategies and resources for supporting Maya, they took time to gain traction.

It hasn’t all been bad, and some parts of Maya’s day have definitely gotten easier. She has better stamina, improved sleep and a broader perspective that makes it easier to ignore little things that used to bother her. It’s also rewarding, and yes, a bit scary too, to see her continue to learn and discover who she is and what the world is about. It’s hard to let go of the little girl we all had grown accustomed to relating to, but it’s time. Over the Thanksgiving holiday Maya wanted to watch videos of herself as a baby—repeatedly. After a while, she looked at me and her dad and said with a little sadness, “I know I’m not a baby anymore, but I will always be your baby, right?”. I couldn’t have said it any better.

-Michele

CPRN Expands Awareness at AACPDM

CPRN builds awareness at AACPDM annual meeting

CPRN builds awareness at AACPDM annual meeting

The Cerebral Palsy Research Network (CPRN) expanded awareness of its efforts during the recent annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) in Ohio.

The formal presentations included: an hour long breakfast seminar on Research CP – our patient-centered research agenda – presented by Michele Shusterman, Paul Gross, Amy Bailes, PT PhD and Ed Hurvitz, MD; a free paper on the state of the CPRN registry and an analysis of the initial 2074 patients presented by Garey Noritz, MD; and an instructional course on partnering with CPRN to conduct multi-center studies with Paul Gross, Jacob Kean, PhD, and Michael Kruer, MD. These presentations included a breadth of reasons to participate in CPRN including:

  1. Participating in research that is most meaningful to the community of people with CP;
  2. Enrolling CP patients in the CPRN clinical registry to expand our understanding of this population in North America;
  3. Collaborating with CPRN to accelerate high quality multi-center research in CP.

CPRN investigators wore new lapel pins to indicate their participation in the network. Investigators were spreading the message that CPRN is open, strengthens research proposals and enables faster execution of research projects.

In addition, the importance of CPRN was mentioned during the general session by Michael Kruer of Phoenix Children’s and Ralph Nitkin, PhD of the National Center for Medical Rehabiliation Research. The presentations and the mentions in general sessions demonstrates that awareness of CPRN and its mission is on the rise.

Maya's rhythm often leaves her out of the fold

Maya’s rhythm often leaves her out of the fold

“I can’t get my words out as quickly as I want to.”
#feelingoutofsync #adifferentrhythm

Last night as we were coming back from the Halloween party, Maya stopped at our neighbors house to get some candy. We were on the side of the road (our neighbor came down with her bowl) and she suddenly stopped talking and abruptly rolled to the other side of the street at full speed. She looked like she was heading into a ditch. I didn’t understand what she was doing and I thought she got angry about something and was storming off.

It turned out she heard a car coming and thought she wouldn’t be seen where she was sitting in her chair. She got so upset because I thought she was being rude and unsafe and conveyed that in my tone, but she said she couldn’t get the words out fast enough to tell me what she was doing. She felt embarrassed and frustrated.

Once I knew what was going on I told her I wasn’t upset with her. But she said SHE was upset. She told me it’s really hard for her because she can’t move and talk at the same time and people don’t always understand her or what she is doing. Even when she isn’t moving it’s hard for her to speak as quickly as her thoughts come.

I can’t imagine how upsetting this is for her. We often have talks about how her pace doesn’t match most people in society, but even I catch myself moving too fast and walking ahead of her. I have been thinking a lot lately about this issue of how Maya’s pace often leaves her out of sync with the flow of life. She has to hope that others will slow down and be with her in her rhythm and that requires people to consciously adjust their pace and be motivated to do so. Last night I watched the little children and her peers running around in groups, giggling and playing. I felt sad knowing that Maya was outside of their rhythm and wishing that it could be different. She seemed happy chatting with the adults, eating and introducing herself, but I still felt grief welling up inside of me. I had to tell myself that Maya’s experiences have and always will be slightly different than her peers. This doesn’t mean she is unhappy but sometimes I can’t stop myself from wishing that she could be in their fold.

*The picture I chose for this post is of Maya and one of her friends who is always willing and happy to slow down and connect with her in her own rhythm.

Maya's rhythm often leaves her out of the fold