First Friendships & Rett Syndrome

Today we went back to the library with our friends Julie and Lucy.  We attended two semesters of Kindermusik with them on Friday mornings and after that was over for the summer, we had decided to just go back to the library’s Mother Goose on the Loose class on Tuesdays until Kindermusik starts back up in the fall.  It has been maybe a month and we either haven’t been able to get our schedules together or something has come up, so we had not met up for an outing in awhile.  We finally did it today! 

Julie is actually my distant cousin somehow through my paternal grandmother.  We were in the same grade in school and we grew up in the same small town.  After we graduated together, she moved away for college, but after getting married and having a baby she moved back to our hometown.  It was really great to reconnect with her last year after we both had baby girls.  We started getting the girls together last year for the library and a few occasional play dates that we actually managed to work out (we are both incredible home bodies).

When we started visiting Julie and Lucy it was known that Lucy was slower than average and was not yet crawling or lifting herself up.  Lucy is approximately 4 months older than Celie.  Lucy was diagnosed with hypotonia.  She continued to miss milestones and I witnessed Julie’s story via our conversations during car rides to the library and Kindermusik.  Julie seemed to know in her gut that something was more severely wrong with Lucy than the hypotonia.  She kept pushing for doctors to test her for syndromes but it was hard to diagnose her.  Poor little Lucy (and Julie) went through test after test until in February of this year she was finally diagnosed with Rett Syndrome. 

Rett Syndrome is a condition in which a certain chromosome is either mutated or missing.  The condition mostly occurs in girls, but there are a few cases of boys with Rett Syndrome, although it is less common.  In the boys the chromosome is doubled instead of being mutated or missing, but they still display most of the same symptoms.  While hypotonia is not always found in Rett Syndrome, it is common.  That is just another thing stacked against little Lucy.  Basically Lucy has to work a hundred times harder than other kids to do mostly everything.  She can’t control her body normally and because of the hypotonia she lacks the muscle tone to support herself.  Lucy is 2 today and still is not walking or even crawling, but she is scooting like a boss!  We are still very hopeful that Lucy will learn how to walk some day.  It won’t be soon, but some day by the love of her mother I believe that girl will walk!  I don’t want this blog post to be completely about the horrible condition, because I am far from an expert on the subject and it would warrant an entire blog itself.  In this post I want to give some background on our friendship(s) and reflect on our wonderful day together, but I would like to point you toward Julie’s blog, Understanding Lu, that she started as a way of coping with her experiences.  For more information please check out The International Rett Syndrome Foundation, created to help educate and connect people. 

Julie had recently got these GirlPower2Cure cards done up through a website about Rett education that she uses to present to friends, or to present to people that seem curious about Lucy’s condition.  The cards are to be an easier way to deal with “gawkers” or people that don’t seem to understand why Lucy isn’t doing the things a girl of her age would normally be able to do.  Until today Julie had not needed to present a Gawker with a card; she had only given the cards to people she knew and associated with.  There was a woman in the library that we had seen most every week when we were taking the girls there months ago but had not seen in quite a few months.  Today she seemed very interested in Lucy not walking and being carried everywhere by Julie for the Mother Goose on the Loose activities.  Julie did a big thing and presented the lady with one of her cards saying, “You seemed like you were curious about Lucy.”  She briefly explained the card and then walked off with Lu to check out their library books. 

The woman, who was in the room with me, then, commented on the situation, saying she didn’t know about Lucy; it seemed as though she felt bad.  She must have then realized that she had been The Gawker.  I guess this is why they teach children not to stare.  It’s rude.  I can’t imagine what it must be like to be Julie and have people stare at your child because they are different.  But when you stare it means something.  It means that you don’t understand something.  And I suppose this is also exactly what the cards are intended for. 

It was a small triumph in the physical, psychological, and spiritual battle that Julie is fighting against Rett syndrome.  She told me as we walked back to her vehicle from the library that it was the first time she presented one of the cards like that to someone that was just obviously staring.  I greatly enjoy our times together.  I listen intently to her "war stories" which force me to reflect on my own situations, that seem more like small skirmishes in the shadow of the titanic drain that Rett Syndrome is in their life.  Our friendship reminds me daily that I am incredibly lucky to have what I have.  Lucy's innocence and struggles inspire me to try harder.  Julie also inspires me immensely.  In the oddest of ways, it is as though she has been rehearsing for this role her entire life, having worked with the special needs students in high school in her spare time and gone to college for a similar field.  She is obviously torn up by the situation but gracefully pushes forward for Lucy, trying to make sure she is doing all that she can to make sure Lucy has the best that she possibly can.  

I can’t imagine what I would do in her shoes.  I know that you can’t say what you would do or be like until something happens or is, but I know that there is no way I would be able to hold it together like Julie does.  She does her job well, and that is Mother.  She reads to Lucy constantly and stimulates her mind with loving conversation.  She made her all home made foods when she was a baby.  She cloth diapered for over a year.  She works with Lucy constantly on her therapies and with her communication.  She carts and carries Lucy to the numerous therapies she has every week.  She went to the 7th Rett Syndrome Conference in New Orleans with her husband to learn more about the condition.  She does what is right for Lucy despite the financial burden that it produces, even though they are by no means financially frivolous or super loaded.  She is frugal, she is persistent.  She is a super mother. 

Riding Buddies, Celie (left) and Lucy (right)

Julie always made a point of doing the right things even throughout her pregnancy, and yet this very “wrong” thing happened.  But Lucy isn’t wrong, she is wonderful the way she is, through the Rett Syndrome.  Her condition has rendered her incapable of speech and normal control of her body but she is cognitively not very different than most girls her age.  She is what she is. She is a loveable little girl with a contagious smile that warms hearts.  She is my daughter’s best friend.  She is going to teach my daughter some of the hardest lessons in life, lessons that I could never teach her.  Celie is going to grow up alongside Lucy and see her struggles first hand.  She’ll play with her, stand by her side, and hopefully one day walk with her too.  I hope that it teaches her to be grateful for what she has and to not take any of her small steps or accomplishments for granted.