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 connect. Connecting 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 Rettgirl.org, 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.
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 Girl’s 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.