Ruth B,
You are probably wondering why a
33 year old mother from Cleveland, Ohio is writing you a letter. Unknowingly,
you have made such a huge and positive impact on my son’s life. Let me explain…
In December 2012, Jude was born.
It was one of the happiest moments of my life. The love and happiness I felt
for my son was overwhelming (and it still is). Days within bringing him home, I
knew something was wrong. Eating was impossible and he lost so much weight he
was drowning in newborn clothes. Many doctors’ visits and respiratory
infections later, including an ambulance ride and hospitalization due to
aspiration pneumonia, Jude was diagnosed with a rare genetic disorder called
15q24 microdeletion syndrome. My world
stopped. The next year and half, Jude
underwent 10 surgeries including a nissen fundoplication and a g-tube placement
and more ER and doctor visits than I can count.
In addition, he started occupational, physical, speech, aquatic, and
feeding therapy. Needless to say, my life was based on therapy, doctor
appointments, his medication regiment, and g-tube feedings. Despite the madness of this unknown world,
Jude walked 2 years earlier than predicted, spoke 20 words, and smiled ALL. THE.
TIME.
In December 2014, Jude stopped
talking. He stopped looking at me. He lost simple skills he worked so hard to
learn. Right away, I called the neurologist because I knew that Autism had
moved into my sweet boy’s mind. Ever since his diagnosis, he has made some very
small improvements, but most of the time it is inconsistent. He still has not
said a word, and boy do I miss that little voice. He still does not make eye
contact with most people. He still does not respond to his name. Specialist and
therapist have assessed him at 6-12 months cognitively, socially, emotionally,
even though he is three and half years old.
There are very few things that interest him, one of those select few
being Elmo and dogs. Recently, that has changed…
That’s where you come in. The
first time I heard “Lost Boy” I was able to relate. Jude is my Peter Pan and I love when I head
into his world that seems parallel to the Neverland you sing about. Jude will not grow up in the same manner
other children will so he is very much a “Peter Pan.”
One night I was cooking dinner and listening to Pandora. As soon as “Lost
Boy” started playing, Jude stopped and stared at you singing on the TV. I stopped and watched him, completely amazed.
Ever since that night, he stops every time he hears that song. If he is having
a sensory overload where he rubs his head and cries, I sing “Lost Boy” and he
stops, looks directly into my eyes, and smiles. If we are in the car and the
song comes on the radio, I watch him from the rearview mirror smiling while you
sing about Captain Hook. Last weekend, when he was in the emergency room for a
g-tube placement, we sang and watched you sing “Lost Boy” so that he would not
cry or be frightened. Due to this new
found love for your song, he uses headphones with your song playing to complete
fine motor tasks. Previously, he cried and threw objects. Now he works slowly and peacefully. I am not sure if it’s the angelic sound of
your voice, the tranquil melody of the piano keys, or the meaning of the song
that relates so closely to our life…
All I know is that your song,
“Lost Boy,” has created peace inside my son’s mind, opened the door for him to
complete simple tasks, and allows me to share that moment with him, as he looks
right into my eyes. All I can say is, thank you. Thank you for singing that beautiful song. Thank
you for bringing so much to my little man’s life!
Love,
Anne and
Jude (aka. Peter Pan)
