Please don’t hurt my baby.

blog imageThis is Aiden.  He is my youngest son.  He is the most naturally happy of my 5 children.  He also has a genetic disorder called Noonan’s Syndrome.

I share this with you because, as a result of his disorder, he has been enrolled in a program funded by the State called Baby Watch.  Amazing program.  From the time he was 3 months old, professional women came to our home and taught us how to teach him.  When we would get frustrated that he still wouldn’t eat, terrified that if he didn’t, he would need a feeding tube, they would teach us, hold our hands, show us the way.  When he was 2 years old and still hadn’t said Mama, they helped.  “Lips together.  Ma . . . ma . . . ma.  You can do it Aiden.”  So, when a respresentative from Baby Watch called me this week to ask if I would testify before the legislative committee on health and human services, the same committee that is considering cutting the funding for Baby Watch, I said “yes.”

I have never been a part of the process before.  I’ve always stood safely on the sidelines, reporting on other people’s tragedy, other people’s decisions.  But not this week.  This week I waited in a crammed hearing room with a hundred other people, some disabled, some parents with children who were disabled, some advocates for the disabled, all waiting hour after hour for their turn to speak. 

The committee knew it had more people there than it had time to hear, but it tried to hear us all.  Two minutes.  That’s how long we had.  Each person walked, or wheeled, up to the microphone.  Some held crumpled papers with their life stories carefully written the night before.  They were nervous.  I was nervous.  Whether they were mid-sentence or mid-tear, when the two minutes were up, they had to go.  I understand the pragmatism.  They had to move us along.  But the pain.

The pain of watching us all, one by one, come to the front to beg. “Please don’t hurt my child.”

“Please don’t hurt me.”

“I can’t function without my assistance.  Please don’t hurt me.”

It was one of the most humiliating events of my life.  How could we put these people through this?  I know the budget realities.  I understand so many thousands are worthy for so many different reasons, but if we can’t help these most helpless among us, who are we?  Is it purely a numbers game? “Well, there are fewer of them than the rest of us, so we should use the money to help the most people.”  Is that a moral argument?  Which man with polio should we sentence to death by neglect?  Which child with disabilities should we not help develop his brain – when we could – if we could afford to?

I know we need to help each other, that the State is not the answer to all of the world’s problems.  In a perfect world, we would all step up to meet every need of our brother.  But in this imperfect world we live in, who are we if we do not help the most vulnerable among us?  How can we enjoy the benefits we’ll receive with the money taken from these least of our brothers?

I am admitting my bias.  My child benefits. My precious Aiden is learning and growing in the Baby Watch program.  I thank God for the teachers and therapists in that program.  And I am humbled by the process that makes me go to the State to beg.

Please don’t hurt my baby.

5 Comments on “Please don’t hurt my baby.

  1. Thank you for sharing this. I can not begin to imagine some of the difficult decisions the lawmakers have in creating a budget. On any level of government. I appreciate your unique view as one who has reported ‘on the sidelines’ for so long…yet now has a different perspective from a very important and real need! For the sake of so many, I hope and pray that a way is found to keep such programs around! – Rebecca

  2. Amanda- I wish I would have been there with you. But, I love to imagine you speaking up for Aiden and for those who don’t have voices. You’re right…its such an important question “If we can’t help the helpless, who are we as a people?”…I’ve been so worried about so many more of the vital social health and support programs undergoing severe cuts. At least the lawmakers had a chance to look the issue and their citizens in the eyes and to hear their voices. I hope what they said and what you said echoes in their thoughts and informs their votes. Love to you and Aiden…Rebecca Cressman

  3. Thank you for sharing that you and many others went to talk to these people. I honestly don’t think they understand from a parents prospective with I child like mine or yours. I am grateful that you spoke up for those of us (like me) that were not informed of the meeting. I hope that they actually listened and took into consideration all the kids that will suffer if they cut the budget in that area. I understand that there has to be cuts but not at the expenses of our children. HUGS!

  4. Amanda – though you felt marginalized by our myopic legislators and the “token” two minutes of pleasant smiles and pandering nods (if they weren’t checking their blackberries) – know that there were many in that room, I’m sure, who appreciated someone they have know and loved for years speaking as “one of them.” So – that two minutes meant a lot to the people that matter most.

    As to the decisions our state legislators are making currently – it just seems odd that transportation and anti-federal govt. “message bills” seem to have equal or greater value than the “human” and “heart” issues. I would rather see pot holes in out highways than missing human services. I say “go ahead and TAX me” a little so that people don’t go hungry, become homeless, or become sick. But alas, you and I are in the minority because this mania of teabagging nutiness spurred on by TV and radio pundits spewing sound bytes is ruling the day. And our representatives are buy it “hook, line, and sinker.”

  5. This is just beautiful. Thanks for sharing.

    As the mother of two boys that have benefited profoundly from the Early Intervention program here in Weber County (sounds similar to Baby Watch), I believe I can empathize a little bit.

    I don’t think our program is danger of being shut-down. Yet. But services continue to be trimmed as the budget gets tighter.

    Oh how I hope we can continue to support these kids that need a little extra attention to grow and progress! They are so hungry to learn! And I ache for parents everywhere that need help finding the tools to help their kids. It makes me crazy that the knowledge and resources are available, but it still comes down to money!

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