What is Rett Syndrome (in our house)?

Rett Syndrome is…

joy! love! faith! hope. trust.

watching. wondering. asking. cuddling. listening. thinking. brushing off. getting brushed off. trying something new. testing. waiting. worrying. answering. playing. smiling. crying. talking. trying something else. processing. searching. breaking down into a heap on the floor. wishing. collecting: data, money, tears, kisses, photos, drawings, hand prints, paperwork, case workers, programs, evals, opinions, tv shows, songs, smiles, memories, moments, thoughts, and tears and tears and tears and tears.

lost. dark. cruel. why? where? what? when? how?

WHO
…is this precious child?
…will help us?
…understands what this is all about?
…will LISTEN. LISTEN. LISTEN and really hear?

apply. wait. drive. wait. help. hold. change. grow. explain. enjoy. ignore. evolve. expand. expect. celebrate! dress. brush. say cheese! halloween. thanksgiving. christmas. new years. valentines day. st. patricks day. easter. 4th of july. happy birthday. little yellow school bus. new school shoes. school supplies. back to school night. ARD. IEP. RTT. ACD. OT/PT/ST/RT. Case Manager. MDCP. CLASS. HIPP. CSHCN. PDD-NOS. ASD.

Dr. Mrs. Mr.

Walk. Listen. Silence. Peace. Cry. Bite. Ouch! Laugh. Research. Learn. Try. and Try again. Fail. Succeed. Superstar! Dumbass (not her…the rest of us!)

a gift, a treasure, a mystery, an adventure, a scar, a badge, an excuse to park in the handicapped spot and then proudly walk across the world with your child.

This is what Rett Syndrome means in our house. That and so much more.