Jamie is our beautiful, funny, smart, shy and witty 10 year old daughter. She brings sunshine to our family. She was diagnosed with Phelan-McDermind Syndrome (P-MS) at age 3. At that time, there were approximately 75 known cases of PM-S. We had questions that couldn't be answered and problems that couldn't be shared. It was a very trying time for our family. Each day was (and still is) a challenge, but it's getting better. Yes...I'm still waiting for her to walk down the stairs by herself, brush her own teeth or to hear an unprompted "love you Mom". BUT...I wouldn't change a thing about this life with Jamie. One of her older sisters (she has 3) once said to me "it wouldn't be our family if Jamie was normal" So very true. Normal or not...she completes our family.
Jamie is in the 5th grade. She's in a special needs classroom with 3 other children. She receives Physical, Occupational, and Speech Therapy. She has an aide mainly for safety purposes. Jamie truly loves going to school. To this day, the school system has not let her down. They know what she needs. They listen to me and her IEP meetings are always a success. I am thankful for that. Her vocabulary consists of about 35 words and about 5 signs. She recently started wearing AFO's to help with her walking. Her orthopedist is concerned about the possibility of "genu recurvatum" in both legs. One major health concern with Jamie is chronic constipation. She's followed by a GI doctor at Children's Hospital in Boston. Her pediatrician has concerns about her weight. She is 4' 6" tall and only weighs 55 pounds. She's very tall and lanky. A gust of wind could knock her down. Other than that she has had no major health issues. She did suffer from croup quite a bit as an infant/toddler but seems to have grown out of it within the past few years. All EEG's, MRI's, kidney ultrasounds, etc have come back normal.
Jamie is a loner when it comes to play time but by no means is she lonely. While it bothers me that she has never been to a sleepover, or gone to a friends birthday party, or giggled on the phone with a classmate, I know she has no interest in these things. She just doesn't have the mental ability to grasp the meanings of all things a 10 year old should understand. She may not have any "human" friends (besides me, her dad, and 3 sisters) but she is lovingly surrounded by a group of fake dinosaurs. She plays for hours with these plastic friends of hers (just babbling away at them). I may not be able to understand what she says to her favorite T-Rex but she sure has a plan for him! Her other favorite activity is going to the beach. I wish we lived in a warm climate year round to accommodate this for her. We make the most of it during the summer months. Jamie loves to just sit at the waters edge and watch people, throw small rocks into the water, or try to jump small waves. I truly believe the ocean is her happy place.
Having a child with special needs has taught me a lot. It has given me so much strength and yet left me humbled by the sheer joy in Jamie's eyes over the simplest things. If you stop to think about it for a minute...doesn't every child have a special need? My Jamie just has EXTRA special needs....
Written by Jamie's mom, Kelsey, c. 2012