Dear St. Anthony

Saturday afternoon. Procrastinating and needing to clean the house. Procrastinating and needing to make lunch. Procrastinating and needing to organize the stack of papers on my desk. Procrastinating.

Then the doorbell rang. I didn't order anything did I? I think. All the feeding tube supplies have already been delivered. Formula for the month here. Extension tubes here. Feeding bags here. Medicine syringes here. All here. In a huge box on the kitchen floor. Another thing I am procrastinating on, which is putting it all away.

The mailman, who I know so well and who probably knows us so well, from the countless deliveries and "Fun and Function" adaptive magazines and everything else that is delivered on an almost too-normal basis, things I would have never thought I'd need to sign for or look through and understand, yea... Back to the mailman... Today he had an envelope.

In it, a letter:

Jan. 28, 2011

Dear Manny, Stefanie and Anna,


I saw your story on The View this morning with my Mom, and I knew I had to write to you and Stefanie and Anna. I want to give you comfort because I saw myself in Anna. I have lived with Rett Syndrome for 25 years. I was 12 years old before I was diagnosed with Rett Syndrome. I hear the ideas of a cure and I am amazed. 


I was so happy to hear that you believe in Anna's amazing intellect. That has not always happened for girls with Rett who are older. We were assumed to be profoundly mentally impaired, so I am glad you believe in Anna. She is fortunate to have such a loving family like both of you.


I want to send you this CD because I have composed music for piano since I was 14 years old, because a music therapist I worked with at school believed in me. I want to tell Anna that I hope she finds comfort in these songs. I have a lot of information about my story on my CD cover and I also write my own blog.


It takes a lot of time, Anna, but I know you will be able to communicate too. Don't give up. It takes a lot of courage to live with Rett Syndrome and you have wonderful parents who love you very much. I send you lots of love from Minnesota.


Karly Wahlin 


I had heard of this amazing woman before... Karly's CD was released last year and I remember seeing a news video about her. I remember, in the thick of our life post-diagnosis and the worst grief I'd ever felt, watching this video and wondering if Anna would ever be able to accomplish something as great as Karly. This was before the Rett Clinic at Montefiore, this was before Dr. Sasha, this was before ABA, this was before YES/NO buttons, this was before I truly believed we could live with Rett Syndrome.

This was before I ever believed we could not only live with Rett Syndrome but we could be happy living with Rett Syndrome.

I remember attending Mass. It was the Feast of St. Anthony, who dabbles in the recovery of lost things. I had only heard of St. Anthony when I'd hear people at Franciscan (my alma mater) say "St. Anthony! Help me find my keys! I can't find my keys!" I'd roll my eyes and think, "Crazy Catholics! No saint is helping you find your damn keys." Then I became Catholic a few years later, and I understood St. Anthony to be a saint who helped people find their faith again. Not just their keys.

As I was fidgeting, waiting for Mass to be over as it only prolonged the angry dialogue I was having with God at the time, the priest closed with, "Let's ask St. Anthony to help people who have lost their Faith find it again. Let's ask him to help those who have lost their Joy, that they may find it again."

I walked out and it wasn't my faith I had lost. (Whew! Deep sigh of relief.) It was joy. That spontaneous feeling of pure joy and unclouded happiness. Would I ever have that again?

So when I stumbled on Karly's story around the same time, I noted the relationship she had with her mom, who never stopped believing in her. I noted her talent, and wondered what Anna's would - or could - be. I noted her life - not unhappy by any means! And I noted her extended family - her stepdad, her sister - and how much she was loved.

When I opened her CD today and saw her blog, Inspired By Love, I cried as I read post after post. It was like Anna was talking to me. She wrote about how she was sick of every outing being at a doctor's office. My Anna understands that. She wrote about how she wanted to feel better but it wasn't happening as fast as she'd like, and that made her sad. My Anna understands that. She wrote about how the scent on a caregiver made her hyperventilate and she couldn't stop. My Anna understands that!

I remember firing a therapist who sent Anna into a coughing fit because of this perfume she insisted on wearing. I explained so nicely how Anna reacts to strong scents and to please not ever where that again and what happened? The next week she showed up wearing the same scent, and I - in my most unkind "Mama Bear roar" to date, while holding a hyperventilating baby girl - threw her out of the house. It takes Anna about 45 minutes to recover from such an episode, and thankfully we have a team who understands. Goodbye, Chanel No. 5. Hello, Degree Light Shower Scent.

As we approach the date that will mark our first year as a Rett family, I have a flurry of emotions. As the date nears I don't know whether to claim it or try to sweep it under the rug. I feel like we've graduated from Rookie Status but every day is a new day, bringing with it both the good, and the bad, of living with an invisible monster. Every so often, I am calling a few members of Team Rett to make sense of a symptom for me when I cannot.

But the joy I so desperately seek unfolds, bit by bit.

Thank you Karly, for your beautiful letter, meaningful words, and inspiring music. You are incredible.