Meet Renee who is 36 and her mom Rose. They have been on this Rett Syndrome journey for quite some time and have some great advice to share with all of us. We really appreciate the reminder of how important it is that we take care of our girls.
What is one piece of advice you would give to a Rett mom whose struggling?
Wow, that's a loaded question. I think all of us Rett Moms have daily struggles and our own ways of dealing with them whether it be with our faith or trust. I know the fellow Rett parents on social media, specifically the Facebook groups which are very supportive are some of the best to reach out to for advice and are great listeners. Having someone to talk with or vent about our challenges is a big help in coping with all that comes with living with Rett Syndrome. Rett parents are full of love for each other and very understanding of the different paths we are all traveling. No matter what the struggle is, don't do it alone. Plan for the future but live it one day at a time.
What would you tell a newly diagnosed family?
I think my best piece of advice for a newly diagnosed family is first, every one of our children with Rett syndrome are very unique and no two are the same, even if they share the same mutation. There is no way to predict how Rett syndrome will affect your child. The spectrum is vast. My second piece of advice, which is very important is to pursue any and all therapies you can at the earliest age. Unfortunately, when Renee was young, Rett syndrome wasn't very common and there wasn’t a lot of information out there about our girls. I enrolled Renee in early intervention, receiving therapies, but the outcome was always the same ... there is nothing we can do for her. That is so far from the truth, physical, occupational, speech and other intensive therapies have now proven to be very rewarding and beneficial for our girls. Always remember, don't give up or give in! Find a way to make it happen however you can.
What is your Rett Girls favorite activity? Renee has a few favorite activities and we integrate them all into her day, on most days. Renee loves music. She grew up listening to music from the 80's and still enjoys it. She'll rock and "sing" when a familiar song is on. Renee also enjoys outings, people and activity. Her walks in the neighborhood seem to soothe her a lot. She is calmer, doesn’t hand mouth as often and will often give a big HI to whomever she sees. Colorful, musical movies also catch her attention. Her new favorite is the Trolls. I do believe her most favorite activity is eating. This has been apparent for some time. Following a major surgery, Renee stopped eating and required a feeding tube for supplemental feedings. While living outside our home, from 2012 to 2015, Renee had numerous bouts of pneumonia and was no longer permitted to eat orally. Renee really missed her food. Since she's been back home, I give her some snacks. She does very well with them, looks forward to and expects them each time her formula is set up.
What has been your biggest struggle so far?
Our biggest struggle thus far has been asking for help! In fact, I didn't pursue it until I didn't have a choice, which I don't recommend. Today, Renee has 48-68 hours of skilled nursing per week. Letting go of my caretaker role was and still is so hard. I am still very involved in Renee’s care with the nurses though. Having excellent nurses has made it much easier for me to accept it but I thought I could do it all forever. I thought I was superwoman. I suggest no one follow in my footsteps. Ask for and accept any help you can get. All of our lives are better because of my asking for help. I'm now her mom, not her nurse 24/7.
What has brought you the most joy?
So much!! The thing that brings me the most joy are often the most simple. The smiles I get when I walk into her room in the morning. They fill my heart and start my day off in a positive way, no matter what. I can always count on that. The other thing is watching my husband (Renee's second Dad) interact with her. They've had a special bond since they met and each hold a special place in each other’s heart.
How do you continue to make time for yourself?
Since getting help for the caregiver role, I have been able to spend more quality time with Renee and more time for myself. It was very difficult to do prior to the skilled nursing. I still don't venture far but that's by my own choice. I do get to rest my old and weary bones.
What do your Rett Girls goals look like as an adult? My goals for Renee as an adult are to keep her living at home, healthy and happy. To continue for her to feel the love we have for her and for her to continue to share it with us. We tried moving Renee out of our home and it didn't work for us. For some, it works well and I am happy for that.
A HUGE THANK YOU to Rose and Renee for sharing their story with all of us. We can easily see the strength and love of their relationship. Caring for our girls is such a reward and we appreciate wholeheartedly the example they share. We wish everyone well and look forward to hearing more about Renee and her endeavors.