Donna writes letter to President Bush . . .
My Three Sons, Joel, Jordan and Jared
Autumn Day
Autumn day, autumn day,
God gives richest gifts today.
Look on every side and see
pleasant things for you and me.
Apples red, and apples yellow,
Round and juicy sweet and mellow.
Load the trees till they bend over,
And their branches brush the clover.
Child be glad with all that lives.
But, forget not God who gives.
--A. B. Ponsonby
Moving into the second year of Jared's life was more than eventful. We cherished our time with our three little boys. I took them to story time at the local library and arranged for the little group to go pumpkin picking on a local farm. We spent time in the park and went strawberry picking and just enjoyed life as much as we could. Steve worked very hard but money was tight.
In order to keep Jared's SSI benefits, our income had a ceiling which was barely enough to keep us going. I languished over this and nearly lost my mind trying to understand a government who would take away a critically ill child's health benefits if his father made over "x" amount of dollars. Steve worked for a family business that did not offer health insurance but was understanding of the amount of time needed to be taken off from work to make frequent trips to Philadelphia's Childrens' Hospital and other doctors' visits. Even if they did offer medical benefits, Jared and I would have both been disqualified for pre-existing conditions.
At that time, the only way we could have medical coverage was to apply for Social Security Income for Jared. We really did not care about the income, even though it was an absolute necessity with the ceiling they placed on our income. For the life of me, I could not figure out why the government wouldn't let us provide for our family financially as best we could and still allow us the health benefits for our son. It made absolutely no sense to me. To think of the money that could have stayed in the government coffers if they would have given people like us the option to make our own income and keep just the medical benefits.
What that did was force us to apply for all the "welfare" help available to us just to survive and make ends meet. I remember a conversation I had with one of the "government professionals" that actually suggested that Steve and I get a divorce and "just live together" so that I would qualify for more government assistance as a single mom. I was appalled that he would even make such a suggestion! I was also told more than once that "the Lord won't mind if you don't pay your tithing to your church." They were so involved in our business that when I had to appear in their office, they wanted to know how much money I had in my purse that day. I felt humiliated, degraded, shamed and embarrassed by the condescending way I was treated. Once while sitting in front of a case worker, her manner was so demeaning that I burst into tears and had to excuse myself to the ladies room to regain my composure.
The reports that were sent from the Social Security Administration made absolutely no sense whatsoever. At one point I received notification that Jared would no longer qualify for benefits because his father had made too much money during one of the weeks of that particular month. This nearly drove me into the world of looney toonies! This happened on more than one occasion and we had to end up getting an attorney involved who, after investigating the case, came back and told us that Jared's SSI case manager was "incompetent." It was literally a full-time job just keeping up with the paper work in the fight for the right to health care.
I became so distressed over the SSI benefits situation that one night, when Jared was six years old, I sat up into the wee hours of the morning writing a letter to the President of the United States. It's a long letter dated April 10, 1992 and I am copying it into this post as written all those many years ago.
The President
1600 Pennsylvania Ave., NW
Washington, DC 20500
Dear President Bush:
I would like to tell you about a remarkable patriotic all-American family whom has stood true to you, their God and their country. They entrusted faith, hope, and prayer in your leadership and ability to protect and secure the very basic needs of the citizens of the United States.
THE SCENARIO:
1985 - Ann Arbor, Michigan - Jared is born into the Steve Masten family. He is born beautiful on the outside but has only half a heart and one lung on the inside. Dad is gainfully employed in advertising sales. Mom almost dies from a super infection following Jared's birth and is left in a weakened condition for months as she takes care of two toddlers at home as well as a very fragile and critically ill infant she loves dearly. Through the skilled hands of surgeons and other medical professionals and the mercy of God, Jared survives. He not only survives--he thrives. However, the first year of his life was touch and go. Dad lost his job when it became evident his company's insurance premiums were climbing, and they, therefore, cut his personal commissions by two-thirds. The Mastens moved home to Maryland to get closer to a hospital that could better serve Jared's needs. Dad took a job that offered no insurance benefits for his family even though it had been promised to him by his employer before he left the state of Michigan. The Masten family's only recourse to ensure the medical care and treatment their beautiful and thriving yet very ill son needed was to have his condition diagnosed as physically and permanently disabling in order to qualify him for the state medical assistance program. Mom had many marketable skills and wanted to work to help the financially drained family in the worst kind of way but Jared needed the very special care that could only be given by a stay-at-home mother. For the first ten month's of Jared's life he was too weak to drink from a bottle or to eat from a spoon so mom had to force a feeding tube through his tiny nostrils and down into his stomach as tears streamed down her own face for fear of hurting her fragile baby but knowing he would starve to death if she didn't. She was determined to make her baby, who himself seemed determine to live, strong--and she succeeded.
Jared is now six years old and believed to be the only child in the world to have survived a single ventricle, hyperplastic right atrium, transposition of the great arteries, mitral valve atresia, pulmonary artery stenosis, and a severe diaphragmatic hernia. After reconstructive surgery performed by Dr. William Norwood at Children's Hospital in Philadelphia, he now has 75% usage of his heart instead of the 50% he was born with. He appears to be a perfectly normal and active little boy with a joy and a zest for life. He has been described by his teachers as being unique. He loves to learn, is a straight "A" student and at this point in his life is determined to be an astronaut. He told his mom he was going to take her on many exciting adventures through space when he grows up. When Jared was two years, nine months of age, he was rolled into surgery singing "the sun will come out tomorrow" and he makes light of his one inch wide surgical scar from stem to stern by calling it his "scratch."
I wish I could say that the Masten family lived happily ever after, but I can't.
Letter to President Bush "To be continued on Page 22"
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