Friday, February 6, 2009

This is the second letter I've sent off today. The first was to the State Senator of our district and it is posted @ There are subtle differences only ...

February 5, 2009

Representative Brad Hill
State HouseRoom 128
Boston, MA 02133

Dear Representative Hill:

Earlier in the week I was invited to attend a ‘State House Rally’ at the Grand Staircase to share my story with my state legislator and ‘anyone else who will listen’. Unable to attend, I am able to write.

Our story began just over twenty years ago with the birth of our second child, a daughter whom we named Emily. Emily was born with Down syndrome. You may be able to imagine the surprise, even shock of a pediatrician, not your own, entering your hospital room to advise you that your baby has a syndrome, a heart condition and is being transferred via ambulance to a Boston hospital while you are stuck, right there in that room, in that bed, for another twenty-four hours. Fortunately for Emily and her family, her heart condition required no surgery and she was home with her family in no time.

The road we’ve travelled since has been uphill and bumpy and on occasion we found ourselves lost due to detours and curves that we hadn’t planned for or dreamed of in our wildest imagination. It has been long, often times arduous and so completely not what we expected. We have all had to learn as we go the ins and outs of living with a special baby, then child, then teen and now young adult. Each age brings new challenges and a new learning curve. For each of us.

We love our Emily no less and no more than we do our oldest child. In our eyes she is a shining star. She spreads joy and laughter as she goes about her days, unaware of all that goes on in the background of her life. She has a light about her that beckons us, pulls us in and encourages us to do more, do better, be better. This learning, these challenges show us just how strong we are as people and have cemented our commitment not only to Emily, but to other individuals with disabilities and different needs. I shudder to think of the financial burden that some families face as they work to provide a good life for their child, brother, sister …

Our family has not been alone in our efforts to educate Emily, to give Emily the tools she needs to live a life that she will enjoy, independent of her family, yet fully supported as she needs. Our extended family, our friends, our school district, her educators, her coaches and the many, many people who work tirelessly at agencies such as North Shore Arc, Till, Inc. and DMR … have all been there with us through ‘all of it’.

Tough economic times are upon us. I know difficult choices are being made daily, weekly, monthly throughout the legislative body. I admire those of you who serve in public office and support your constituents not only in the good times, but also during these difficult times. I recognize that your office receives requests daily from many individuals with varied special interests – those that they hold dear – to support their cause, their funding, and their needs.

I am no different than those that ask for support for other causes. I am writing to ask you to support full funding of current programs that provide family support, respite, social, day care and educational opportunities for babies, children, teens and adults with disabilities, special needs and mental retardation. Without the continued funding of programs currently in place, the many disabled and special needs citizens of the State of Massachusetts will lose the precious support services they receive that enable them to live full, and to the best of their abilities, unrestricted lives.

As you work as Representative of Fourth Essex, please keep in mind the hundreds of families and individuals receiving these needed supports and services, and recognize that the numbers will not diminish, but more than likely, will climb as the economic downturn forces layoffs which in turn will force more families to seek assistance and support.

The waiting lists for respite and other vital services are long now. I remember well the four to five year wait during the early years of our journey with Emily; I cannot imagine how much longer the wait will grow as we all struggle through the next few years.

I believe the State of Massachusetts should make a commitment to these citizens, less fortunate than some perhaps, but in no way less valuable than other citizens of the commonwealth.



Donna said...

Wow, what a well-written letter!

Lisa said...

I really love your letter! It is excellent. I wanted to add that it had a special meaning for me because my husband's sister has down's syndrome too. Her name is Jan and I have to say there has not been one Christmas or birthday when Jan did not send a gift or card for my children. Give Emily a hug for me today from our family to yours.

MyMaracas said...

I certainly admire your heart. Your letter is beautiful, and I'm sure it will make a difference.

Thanks for stopping by earlier. And yes, "harried" is exactly the right word.