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March 8, 2017



Image of the Titanic Sinking from James Cameron’s Titanic


“The true meaning of life is to plant trees under whose shade you do not expect to sit.” -Nelson Henderson


Do you remember that scene in the movie, Titanic, when the Irish immigrant mother is tucking her children into bed with a bed time story, knowing that the ship is sinking and there is no way for them to escape?  When the Titanic started to sink, the crew was instructed to lock the gates on the stairs, trapping the second class passengers on the lower decks with no hope of escape. The passengers who could not afford the first class tickets were left to drown. The first class passengers- the ones who could afford the more expensive ticket- were at least given the equipment that might help them survive the icy waters of the North Atlantic.

Not every day, but often enough, I get news that another special needs child that we know has earned their wings. Today was one of those days. I heard about it as I was between loads of laundry and writing advocacy letters to our local congressmen and senators.  For all the medical interventions available, many of our children still leave us too soon.  Often these are children that have had a lifetime of medical care and expensive equipment to help them participate in life, and in many cases to help them survive as long as they can. And still, many other disabled children survive because they have access to this same level of care. We can’t always control the outcome, but we can at least try to give every child a fighting chance. Very often that specialized care is funded, at least in part, by Medicaid waiver programs. These are federally funded, state run programs that help families with a substantial part of the cost of caring for disabled or sick child. The costs of caring for these children can be astronomical, and many families find that care requires that one parent leaves their career and stays home as a full time caregiver. Without Medicaid these families may as well be trapped below deck on a sinking ship. At least with the help of Medicaid and other social safety nets, families like ours are given a chance- we are given the medicine and equipment that might help our children survive, and in many cases thrive.

This week, a new bill was introduced that would drastically slash the funds that these families rely on. The cuts are disguised with jargon such as “per capita block grants,” that won’t start until 2020. Don’t be fooled, these are dramatic cuts that will gut the social safety net that these families rely on to care for their children.

And then what? What do we do when the funds are gone and the programs are cut? The cost of private insurance is sure to skyrocket, and that is already a cost that families like ours will not be able to afford. Add to that, private insurance doesn’t always cover everything that a disabled child requires.

What happens when you have to choose between groceries to feed your child and medicine to keep her alive? This is not hyperbole. Even with excellent private insurance, without the help of Medicaid, our daughter’s medical costs are thousands of dollars each month. Those medicines that are so expensive are keeping her alive.

So what would you do? Honestly, I’d like to know. And the therapies that are helping her to walk, to communicate, to function in society- those aren’t completely covered either. Now, for those of you who are familiar with our story, you already know, that we don’t just have one disabled child in this family- we have three. So then what? Do you pick which one of your own children “deserves” medicine or therapy?

They are barring the gates. They are keeping the most vulnerable families below deck while the wealthiest and healthiest get to don life jackets and sail off to a new world. They are locking us below deck to drown. What are you going to do? Quietly and sadly tuck your children in for bed, because as a mother to a disabled child you simply don’t have the luxury of time to protest and fight?  But if you have the chance,  will you rise up and break down that gate? And if you are lucky enough to be up on deck, will you use your place of privilege to find a key and unlock the gates?

What would you do?  Because history is watching and the time is now.


What will you do?




Image of mother tucking her children into bed as the Titanic sinks from James Cameron’s Titanic





One Comment leave one →
  1. March 8, 2017 10:30 pm

    Heartbreaking! I would stand with you and fight.

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