Our Best Laid Plans: Living with Rett Syndrome

 

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Before I was even pregnant, years before really, I began to develop some beliefs about what parenting was going to be like. I felt strongly (and still do) about the value and importance of toys without lights and whistles and ones that don’t do all of the playing for a child. I felt passionately certain that I would have the most amazing breast feeding experiences of anyone, ever. I believed that cloth diapers would rock my world and that my precious little son or daughter would never watch television and instead we would frolic happily through the yard; gardening, playing, running, laughing, and just generally having the time of our lives. And then my sweet daughter, Lucy, came along and I was introduced to reality and how you can have all of the plans and beliefs that you want, but they just might not ever actually come true… at least not in the way you had imagined.

 

My daughter, Lucille May, Lucy for short, and Lu for shortest, was born on May 20, 2010. On February 27, 2012 she was diagnosed with a rare neurological disorder called Rett Syndrome. This condition had been present since shortly after conception, but signs of it do not start to show up until 6-18 months of age. At that time, the child, (mostly girls) begins a regression period where they lose their ability to walk, talk, use their hands, and many other skills they previously may have had. For more detailed information visit this website

 

During the first five days of Lucy’s life, I tried everything every nurse and lactation consultant suggested to get Lucy to latch on. She just couldn’t seem to get the hang of it. She also had jaundice and needed to have a bowel movement, but was not being successful due to not getting much milk. After five days of crying, panicking, and utter devastation, I gave up and gave Lucy a bottle of formula. She drank it all down, went to sleep, and then later had a nice poop that was clearly full of bilirubin. I spent several days after that doing a lot of crying, and doubting, and worrying that I had not tried long enough and I wasn’t doing what was best for my baby.  Still to this day Lucy has a great deal of trouble drinking. She still cannot suck on a bottle, or straw without losing liquid. This is caused by Rett Syndrome and that was why she could not nurse, but of course I didn’t not know that then. 

 

I was a faithful cloth diapering mother until Lu was about 18 months old.  At this time, Lucy was not crawling, or walking (and still can’t). I used flats, pins, and wool diaper covers.  I crocheted most of the wool covers myself and was extremely proud of them. But, after months of people, my mom especially, suggesting that maybe Lucy would be able to move more easily without the bulk of the cloth diaper getting in her way, I finally gave them up too. This was also before we new Lu had Rett Syndrome, and before we knew that no slim, disposable diaper in the world was going to help her crawl or walk. But, I was willing to do anything to see what would make a difference for her.

 

All girls with Rett Syndrome have some degree of lost hand functioning. Lucy can still use hers somewhat; some girls lose theirs completely. Even with the partial functioning, Lucy cannot play with most toys in the typical way. Not only do girls with Rett lose hand function, but they also begin to have near constant, repetitive hand movements that they have no control over. Enter, toys that play for Lu and TV. She loves them both. I struggle constantly to try and find activities and toys that she can play with independently, but I also spend a great deal of time being her hands for her. I think it is hard on us both and as she gets older, she seems to be realizing more and more the limitations Rett Syndrome causes. And so, we are left to try to retain as much creativity and imagination that is trapped inside of a body that makes it impossible to express it independently. Lucy can’t wrap up her dollies and make them talk to each other, but she can squeeze her talking Abby Cadabby and Super Grover 2.0, and she can make her Violet sing all of the songs she has. Lu can’t sit down with some crayons and paper and draw me a picture, but she can use a universal cuff to hold a crayon for her and my hand as support, and color a picture. She can’t hold a paint brush, but she is a wonderful finger painter! This isn’t how I thought it would be. This is far from what I had planned for Lucy’s childhood. But, we make it work, we adapt, adjust, brainstorm, and search for solutions. 

 

I hate Rett Syndrome and what it does to my daughter every day, but my nature has always been to try and find something positive in any situation. In spite of Rett Syndrome, Lucy is most often smiling. There is no greater motivator to keep looking on the bright side than our amazing daughter, regardless of whether or not everything is just the way I thought it would be.