There is no shame in reaching out for help. The reality is really pretty bleak for most families dealing with any kind of massive medical crisis. Every weekend there seems to be a fund raiser, or cut a thon, or story in the paper about someone who is doing something on behalf of a loved one. Disabilities, cancer, medical trauma, ...these are not things we plan on. They are not part of the American Dream. When I walked down the aisle on my Wedding Day 19 years ago... I never anticipated that my life would look the way it does right now. Not after triumphantly completing my Masters Degree and setting my sites high on the corporate ladder. I was an advocate of "Working Mother". Now I am a mother who is an advocate of a severely disabled child.
But with all the love I can muster and the strength I can find I am trying to give him the life he deserves...and that makes it all worth it. There really is no "plan" that is in our control.... There is no such thing as control either... I am a Christian, and through prayer and hope and faith... I learn the skills I need to continue on this mysterious journey.
But I can't do it alone.
October 2011
Dear friends,
As you may, or may not know, our son Daniel (13) has a severe condition known as Polymicrogyria. His brain is about 80% deformed. It goes without saying that Daniel’s life is precarious and each day he faces seizures, respiratory fragility/aspiration risks, and overall physical and developmental problems. He is fed via g tube, can not talk, is in a wheelchair and has developed scoliosis this year with his growth. He will require surgery to correct this.
I have put together a terrific team of medical professionals, and therapists that see Daniel and work with him as much as his insurance allows. I manage his many doctors appointments, hospital trips, insurance bills, equipment, educational intervention, medication and supplies, and most importantly providing Daniel with a joyful quality of life, a safe home, and comfort. It is a full time job. I was terminated from a full time job in 2002 because of Daniel. Shortly after that he needed major hip surgery at the age of 6…and I had to put my job search on hold. It is still on hold…as his needs have significantly increased with growth and age.
I’m raising funds for my son because we have so many needs and expenses that raise the bar so high above normal life!. I have started a blog/website julieandjohnhasselberger.blogspot.com with ongoing updates that I am going to keep current.
Looking. Searching. Seeking. Praying. Mostly praying. For resources.
And asking people…
“Can you help in any way help our family” The goal is reach $10,000 in order to pay medical bills, pay for van repairs, pay an $1800 therapy bill, repair our home(needs a lot of repairs), and set up a Fund in his name in order to build for his future. He needs a new car seat ($800) and now Medicaid is not paying for diapers so we will have a huge expense there.
“Do you know anyone…or any resources…or is there anyone else I could talk to?” Its ridiculously difficult to take care of a disabled child in this economy, and we have a family of 5.
We can survive if we can take care of Daniel’s expenses. I am planning on going back to school for my nursing degree. I have a Bachelors, and an MBA in Human Resource Management…which provided a great career for many many years. But the traditional corporate world doesn’t accept professionals who have been out of the work force for awhile, and who need flexible schedules.
Perhaps you know of someone who can…and you can forward this to them.
With much love and gratefulness,
Julie Hasselberger
Psalm 34
Hasselberger Contact information
Julie, John, Sarah, Daniel and Thomas Hasselberger
203 426 8674
203 788 9602
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