My name is Jennifer Zoll, I am a physical therapist that has had the honor of working with Juliana Brooks, a beautiful 12- year old girl with Rett Syndrome. Prior to meeting Juj, (her nickname, that I have adopted for my OWN daughter) I had never even heard of Rett Syndrome.
I educated myself and learned as much as I could so I could provide her with the best care possible. Being with Juliana and her family was such an amazing experience, as I got to see what advocates they are for their daughter. I got to see her amazing personality in her eyes and smile and I got to hear it in her laugh.
I got to see the struggle her parents and sister endured when Juliana had to have surgeries on her back and hip. I’ve also been able to experience Juliana’s perseverance and strength as she always battles hard from her setbacks. She is a fighter and a warrior.
I have four daughters of my own, and so often I see them in Juj’s eyes. I hear them in her laugh and I pray every day that a cure is found. It brings tears to my eyes to think of Juliana speaking her first words, I wonder what she would say, what’s the first thing she would want to do. I picture Juj and her sister Olivia running around and swimming in the backyard with Roger and Kristy looking on with pure joy.
I believe with the research that is out there now …a cure WILL happen in my lifetime. I feel connected to this organization because of the amazing families I’ve had the pleasure of getting to know, the hard-working unstoppable girls I’ve gotten to work with, and perhaps because I have four daughters of my own. Our entire family has been inspired! We will do what we can to volunteer and help in whatever capacity we can. My daughters and I have started making homemade birthday cards for individuals with Rett, and we have so much fun doing it.
They love the thought of bringing joy to someone else. They work really hard and try to personalize each one. This year my girls asked if we could make cards every year and the thought of their loving giving spirit filled me with pride. And the answer of course was “ABSOLUTELY YES!!” It’s one small thing we can do to acknowledge and recognize all of the fighters and warriors out there fighting every single day.
Volunteering with Girl Power 2 Cure has been one of the most fulfilling experiences for both me and my family because of the strength we see in every individual and their family. They are an inspiration to everyone, and I am thankful to have the opportunity to not only help them but get to know them and their families.
Girl Power 2 Cure is such an important cause and anyone would be lucky to be a part of it. #untiltheycan #Juliana #Danai #Olivia #Sarah #GP2C
Lately, I have found myself focusing on self-care because my family is in a period of transition. By making sure I take time for myself it is helping me refocus and be better able to meet the needs of my family.
One of my favorite ways to practice self-care is through movement. I dance. I run. I jump. I stretch. No movement is too small or too big for me to attempt. Which brings me to what I am so very thankful for every day.
I can MOVE!
I can completely control my body movements. When my brain sends a command to my legs to leap, they listen, and I leap. Maybe not with the graceful fluidity of a professional dancer, but I leap. If I need to walk or run, my legs propel me forward.
During a PoundFit class, I channel my inner Rick Allen from Def Leppard while I beat the floor with my rip sticks. Movement brings me so much joy simply because I can move.
I once had an instructor comment on how much I move while we are in class and that I never seem to stop. We talked a bit more and the conversation turned towards my inspiration, which is Evie…big surprise right? I shared how Rett Syndrome has taken the ability for her to control her own body movements and that even the simplest action, like holding a cup, takes extraordinary effort on her part.
That even when she seems to struggle to place one foot in front of the other, she keeps trying and pushing herself to keep moving forward. Her perseverance and determination has brought perspective to my life and made me grateful for my mobility.
I want to encourage you all to find joy in the movement. It doesn’t have to be running a half marathon, even though we’d love to have you join Team GP2C, it can be something little. Go for that walk. Take a class with a friend: I highly recommend Sh’Bam, BodyTone, or PoundFit. Try something new, like belly dancing or hiking. Just get out there and move.
We never know what tomorrow will bring into our lives and taking time for yourself may be just what you need to rejuvenate your body and mind for what might lie just around the river bend (yeah, I’m a Disney geek).
The holidays are filled with family, friends, fun and laughter. Its a time where one may re-connect with those around them to celebrate the season and all that they have to be thankful for. In the case of a family with a special needs child, all of these things still remain true. But, this time of year comes with a little “extra” to consider when attending the many festivities and excitement this season has to offer.
For me, I have always loved the holiday season. There is something in the air that is buzzing with excitement and each day has an over-arching feel of such profound gratitude for all that you have to be thankful for, that you just want to share the joy with everyone you encounter. I may be a little too overzealous for this time of year, but I am ok with that. Festive music starts the first of November!
The get-togethers, family visits, and travelling from place to place are all an adventure, where the biggest stressor is always what are we going to eat and at whose house are we gathering. Once our family got our daughter’s diagnosis of Rett Syndrome, our holidays began to look a little different. We now had many more things to consider.
You see, for our family, we have always been very “go with the flow”. We adapted to every scenario and last minute changes of plans never bothered us. It wasn’t until Evelyn’s regression began and all the changes that it entailed that we began to view holidays differently. We no longer had the mindset of, we are good with whatever plans, everyone else can decide, and we will just show up. It became more of how will these plans play out for Evelyn? Will she get overwhelmed, is she familiar with the environment and will she be able to navigate it confidently, is there a suitable place to let her rest when she needs it, what is our plan of action should the situation become too much for her and we have to leave?
These were all new things we never had to think twice about when she was much younger; when our life seemed more “typical”. We had our bumps in the road trying to navigate what holidays look like for us. We’ve become more vocal if we found that a suggested scenario wouldn’t be the best situation for our girl and we needed to offer alternative options.
There have been times that we have had to leave early if it became too overwhelming for Ev and the hardest part, at least for me, (as someone who is always looking to please others) is having to say “no” to certain things because it would not be the best situation for our girl. We have learned, through much trial and error, that to truly enjoy the holidays, we must have a plan in place to do what would work best for Ev, and our family as a whole.
We choose the situations we bring her into wisely and travel to places where we have some support, if possible. We do not try to do everything and we say no to a lot. We have learned to be content with what our girl is capable of, which at times, is much more than we can handle. We choose situations where we can be outside if we need to take a break, give her space to herself to have some quiet time, and give her an environment that she is comfortable with so that she can socialize to her hearts content.
We no longer try to live up to expectations we had of ourselves to make everything work. We do what we can handle and we find peace and contentment in the rest. The joys are something to be treasured even amidst the challenges that they might bring.