By Lauren Pimpare
Five and a half years ago I was your typical city girl, living with my husband and our beautiful 18-month-old daughter in our condo in the North End of Boston. Working, walking everywhere, eating out, living the good life, with the world at my steps. I was the quintessential “urban-mom.” I was also pregnant with our second child. Life could not have been more perfect. And then my water broke an hour after the Bruins won the Stanley Cup. I was 32 weeks pregnant. While the city outside celebrated, we rushed to the hospital where I would spent the next two weeks on hospital bed rest. Two weeks later our son Boston was born.
The first EEG showed no communication between the left and right hemispheres with limited brain activity. The MRI showed global damage. Days later, the second EEG showed some communication between the hemispheres, but still limited activity. But my baby was awake and breathing on his own.
After a week the doctors sat us down in a large room filled with neonatologists, my OBGYN, neurologists, chiefs, chairs, residents, fellows, NICU nurses… a whole team. The team said, “Your son’s EEG showed some development since the initial tests. However, it was not reflective of normal growth.” They were clearly concerned. Words flew around the room. “Confined to a wheelchair, deaf, blind, unable to speak, unable to walk, fed through a tube, vegetable, completely dependent on us” was what we heard.
We made a promise that day to do everything within our power to help Boston reach his full potential. And we have. This includes packing our family up and moving to Cohasset, largely for the schools, and their willingness to work with the families of children with special needs. Since birth, Boston has been diagnosed with the following: failure to thrive, cerebral palsy, spastic quadriplegia, a seizure disorder, a vestibular disorder, and legal blindness. In five and half years we can count on our hands the number of times he has slept through the night. He can’t sit, walk, talk, he can barely hold his head up, he wears glasses, he has no control of his arms, legs, or hands – no manual grasp, he can’t sip a straw, or blow a bubble. And he is the light of our lives.
We tried using traditional therapies to help him with everyday skills, but it was not until we found South Shore Conservatory and Music Therapist Eve Montague that, for the first time, I watched Boston truly enjoy an experience. In his music therapy sessions with Eve, chair of SSC’s Creative Arts Therapies department, he can be himself and smile, bang a drum, vocalize – or just listen to her play the guitar. Where he had little movement at first, after three and a half years with Eve he can now bang the drums while she sings, and often reaches for her guitar strings and tries to strum along. He looks forward to his session every week and is sometimes moving with such excitement that he is difficult to hold!!! I am so thankful for these sessions. There are times when he hits a drum or strums the guitar in perfect time with a song she is singing. Experiencing this with him is profound. It assures me that he fully understands everything that is going on and, in that moment, he is interacting with his environment appropriately. For us, there is nothing in the world like it.
South Shore Conservatory’s Chase Away the Winter Blues gala, on January 28 at the River Club in Scituate, helps raise funds for SSC’s Creative Arts Therapies department, as well as for SSC Community Partnerships programs, including ImagineARTS, which provides a free arts and literacy program for kindergarten students in Brockton, and financial scholarships for deserving students. Tickets to the event have sold out, but donations are still gratefully accepted. To find out more, please contact Liz Graham at firstname.lastname@example.org or 781/749-7565, ext. 14.