Sunday, February 2, 2014

"D" Day: One Year Later

A year ago, we started laying the foundation of a new life. A life we were not prepared to live. A life consumed by Rett Syndrome. At first glance, I didn't believe the diagnosis of Rett was so bad. You see, for the two years prior to this day we were searching for an answer to our daughters developmental delays and physical ailments. Along the way, I became friends with other parents (my Hypotonic Warriors) searching for an answer just like we were. Some of those answers came in the form of Spinal Muscular Atrophy Type I (to name one…you can read about Connor and his family at Struggles Of An SMA Family) for which there is no cure and life expectancy is very short (10% chance they will live past 2). I cried with them. And I feared our own mystery diagnosis just a bit more. I never knew there were so many syndromes and diseases out there beyond the ones we have all heard of like Cerebral Palsy, Down Syndrome, and Autism. It has been a real eye opener followed by a squirt of lemon juice.

The morning the report arrived, (via email) I was relaxed and enjoying a cup of coffee. Evie's dad said he received a notice from Medical Neurogenetics that we had a message. I was no longer relaxed. I leapt from my chair and ran to my computer to log into my encrypted account. I read quickly scanned the report (most of which I didn't understand…it was medical gobbley goop) that said Evie had Rett Syndrome it didn't sound so bad. I was hopeful. I am still hopeful. But my rose color glasses quickly shattered. Rett has many layers that overlap one another and create compound complications with no easy solutions. I have lost count of all the things Rett has stolen from us as a family and Evie as a person. It is a long list. A lot of dreams and hopes were mourned during the last twelve months. The grieving is not over. There will be more. But I try not to bog you, my readers, down with all the dirty depressing details. I'm fairly certain you can fill in some of those blanks on your own.

So, as I sit here reflecting on the last year and trying to piece together my own feelings (way to many to manage at once) I am going to force myself to tell you about the great things that have developed since "D" DAY.

1. I became a part of a wonderful supportive family, my Rett family, that is always willing to help me when I have a question or a concern. Sometimes just being an active member of an online support group will answer more questions than I can even come up with on my own. We're all just trying to make the best of a pretty nasty diagnosis. Advocating for our girls (and boys), learning to be their voice, giving them the opportunity to have a voice (via eye gaze communication systems), researching new therapies, adapting toys, creating equipment, making our own solutions to problems most retail stores don't even address, cheering each other on when we think we can't take anymore, grieving with a family when another silent angel gains her wings, celebrating each victory… I could just keep going here.

2. I became involved with Girl Power 2 Cure (GP2C). I met Ingrid (and many other members), whose energy never ceases to amaze me, and whenever I spend even a hour with her I come away feeling hopeful, refreshed, and ready to tackle Rett Syndrome. I consider myself very fortunate to live just an hour away from their volunteer center and will be making my way there in the beginning of February to help prepare for the Disney Princess Half Marathon (if you would like to make a donation to Team Maria click here). This organization has a passion for a cure to Rett Syndrome, for our girls, and for their families. GP2C just launched Rett U, which is an online learning platform for educators, therapists, physicians, and families of girls with Rett Syndrome. It is designed to help them learn, "how to support their students with Rett Syndrome and push them to their highest levels of academic, physical and personal achievement." To me it is revolutionary and a game changer. Watch this organization because they are doing BIG things and I'm glad to be a part of them!

Awareness, research, hope, and a cure!
It is possible!! We believe!!!

3. Evie received her wheelchair and we've almost finished building her wheelchair ramp on our home. That has been a work in progress for about six months now (nine if you count all the fund raising) and we're getting close to the finish line. We could not have accomplished this monumental task without the help of my parents, our family, our friends, co-workers, our neighbor, and my parents church family at Gardenview Baptist. I felt so blessed by those that have come to our home on their days off to help and to those that donated items and helped work  our massive garage sale (we're doing it again this spring so time to clean out your attics, closets, and garages). I have been so overwhelmed by the support and generosity that I've cried.

4. We said goodbye to our Early Intervention therapist and then said hello to our new team of therapists and teachers at Evie schools (which I never wrote about). I was so nervous when we first started the process to move her into the school system and it went so smoothly. That may not always be the case in future years, but it was a great first time experience with creating an individual education plan (IEP). We have her enrolled in a classroom that is a certified MOVE International site. During her first week of school we got to see  her stand upright and it was…there are really no words to adequately describe how it felt seeing her standing (she had assistance, but so what). Three months later and she is taking strong steps with her right foot, sitting up straighter, babbling more, and is blossoming. I can't wait to see her bloom!

5. I submitted Evie for a runner through I Run 4 and we were matched with Shana. She is a chiropractor in Knoxville, TN ( and it has been wonderful getting to know her. The relationship is one of support, encouragement, and inspiration. I Run 4 matches special needs children and adults with runners (but not limited to) to help give them inspiration to continue running. Many families and runners develop close bonds with each other and if you would like to be matched, you can submit your request here.

6. I started boxing. After 3 years of lifting, carrying, and supporting Evie physically I ended up with multiple micro tears in my muscles (mainly upper body). It was constant pain and I was supposed to "take it easy" (haha!) until it healed. I've known for at least a year that the physical demands placed on me would increase and I needed to strengthen my body. I'm not a Zumba girl (I have no rhythm) and I'm not supposed to run (bad knees). I also needed some kind of outlet for all the anger. I'm pretty angry sometimes… Angry at Rett (among other things). I used to take a hammer to our dilapidated fence, but it wasn't enough. A friend has an all women's boxing gym called Boxing Bunnies. I started going twice a week last month. It's a perfect fit for me. I'm already feeling a difference in my knees when I have to squat to pick up Evie's wheelchair (all 64 pounds!). I'm still angry, but twice a week I get to direct that anger at a punching bag or wrecking ball. Maybe running will be placed back on the table in a few months.

7. Our oldest cat, Moo-Shu, has finally taken a liking to Evie! Over three years she went from keeping a safe distance to allowing Evie to fall onto her and not move.

I have so much more I'd love to share, but I have to stop at some point otherwise you'd be reading a novel and not a blog post. I'm actively trying to take better care of myself. Evie is making great progress at school. We have a wonderful Rett family to lean on in times of need. I'm inspired by GP2C's determination and hope. Evie has become an inspiration for others. We have been blessed beyond measure and I constantly remind myself of that. This last year has flown by and creeped by at the same time. I wonder what the next year holds for us. Oh, and I still have that Louisville Slugger ready to swing!

1 comment:

  1. Love that some blessings have come out of Evies diagnosis. It also sounds like shes doing great. You are right to take care of yourself, as they say this SN stuff is a marathon rather than a sprint.