Monday, November 6, 2017

Spotlight Series: Jenna

Meet Jenna, she has a contagious smile and has taught everyone around her the importance of enjoying the little things in life.  

What is one piece of advice you would give to a Rett mom whose struggling?  
Reach out to other Rett parents to talk with and share. It helps so much to just know you are not alone. If you have family and friends who can help, let them. Remember to take care of yourself and make sure you make time for yourself. You have to be healthy and strong in order to care of others.  

What would you tell a newly diagnosed family?  
I would recommend a newly diagnosed family to find a support group or somewhere else online to connectConnecting with local families who know exactly what you are going through is priceless. Get involved with Girl Power 2 Cure and leverage their resources at, Rett University and via the Rett Girl Magazine. There’s lots of great new information coming out all the time and staying on top of really helps with coping with it all. 

What is your Rett Girls favorite activity? 
Jenna is very social and loves to get out. She enjoys going to lunch, dinner or to the mall to walk around. We try to get out as much as possible. She also really loves music and watching television.  

What has been your biggest struggle so far? 
I'm not sure it's been one specific thing, but the overall fear of the unknown. It’s hard to predict what may come up and that can be very scary. Having a great support team at home via family, relatives or friends is important as they all can help you through those challenging times.  

What has brought you the most joy? 
Jenna has taught us all the importance of the little things in life such as making every moment count, spending time together, and just enjoying this wonderful life. Her smiles and laughter are contagious and helps us all put into perspective what is really important. She continually amazes us when she does something we never thought she would. That’s what is amazing about our girls- they are in there and will amaze you!  

How do you continue to make time for yourself? 
This is probably one of the most difficult things to do. It’s challenging to find help and find people who really understand our girls and women. We are blessed to have some great family that help out from time to time and really enjoy spending time with Jenna. It’s not a chore, instead they enjoy it. It’s important for you and your partner/spouse to give each other a break every now and then too. You have to reconcile that it’s just as important for you to take a break as it is to care for others. A short, small break from time to time can really give you the energy you need to endure. 

What do your Rett Girls goals look like as an adult? 
We work hard to keep Jenna healthy and happy and while continuing to experience life as much as possible. Because she loves to get out and do things, we work hard to try new things and make all opportunities possible for her. 

Thursday, September 28, 2017

Spotlight Series: Kimberly

We hope you learn something different from each of our families that take the time to share their experiences into adulthood with their daughter on this Rett syndrome journey. When it comes to being non-verbalsome may think our girls or women don’t understand or they just don’t talk to them. Meet Kimberly, 32, who loves to stay active and social and her mom RenĂ©.      
What is one piece of advice you would give to a Rett mom whose struggling?   
Talk! Talk with your friends or family to get those emotions out. Talk with other Rett moms because they understand more than anyone else.  Keeping things bottled up is not healthy. If that’s not enough, don't be afraid to seek out counseling and help from your doctor. It is never a sign of weakness to ask for help when life becomes more than we can handle. 

What would you tell a newly diagnosed family?    Rett Syndrome is a tough diagnosis. Please take everything one day at a time. Your world has just been flipped upside down and you have much to absorb and to deal with. Your child is the same person today as they were yesterday. But, your dreams for their future have changed in just a short time. Be kind to yourself and again, take it one day at a time. 

What is your Rett Girls favorite activity?   Someone just sitting down to talk with her. People interacting with her is by far her most favorite thing! She also enjoys shopping, church (she loves the singing), television and going to the movies. She is very social! 

What has been your biggest struggle so far?   My biggest struggle has been how to learn to appreciate each day and stop worrying so much about tomorrow. I am a planner because of my Type A personality. Rett syndrome doesn't always cooperate with my plans! Seriously, Kimberly has always been fragileI really struggled with worrying about tomorrow and at time forgot to live for today. It took me 4 years of therapy to learn that and I still have to remind myself every now and then. Kimberly is so amazing and I want and need to focus on enjoying every day with her to the fullest! 

What has brought you the most joy?   Kimberly has the best smiles and giggles. Just knowing and loving her is the biggest joy and getting to be her mom is the greatest gift. The friendships we have created over the years with other Rett families have been a great bonus. My dearest and closest friends have always been other Rett moms.  

How do you continue to make time for yourself?   
We have nursing now during the day. I get out of the house and shop, go to lunch and some days, I just take a good nap.  Nursing has been a Godsend for us. We did not have nursing until Kimberly was 27 years old. It opened up a whole new world for me. would encourage other families to explore your local resources and options which are available to you. Don't wait until your girls get older like we did. It’s so critically important to have the support you need for everyone involved.  

What do your Rett Girls goals look like as an adult?   
We focus on keeping her healthy because she is somewhat fragile. We also want her to have an active social life. We try to keep those two things in balance and it has been working well for us so far. Kimberly is happy and that makes everything worth it. 
We appreciate Kimberly and her mom, RenĂ© for sharing their experiences with us. We hope Kimberly continues to stay healthy and active in her social life. There’s no doubt, she’s likely the life of the party!