Since 2004 I have been lucky enough to be the mother of a special needs child. Many people would say “lucky”?
In the beginning we grieved for the loss of a “normal” future for our daughter. Never being able to see her take her first steps, say Ma-Ma or Da-Da, ride a bike, get her ready for her first dance, hear about her first crush, see her graduate, walk her down the aisle, see her become the President of the United States or a winner of a Nobel Peace Prize. Okay, you get my point.
Then we started learning from her. This child who could not speak, crawl, walk, or even eat without a tube, a child who would forever be 3 to 6 months of age.
She has a way of communicating with her eyes. She looks at you and you melt. She makes you appreciate the fact that you can eat and taste ice-cream or shift a little to get more comfortable. She brought our entire family closer together.
Before this beautiful little girl entered my life – I thought that the latest fashions, movies, making sure my hair and makeup were just right – that those were the important things.
Through Julia, I have learned that what is most important are the memories we have with those that we love. The relationships we cultivate and that we say what we mean and what we think, that we don’t wait until it’s too late to say how we feel, and that we apologize when we make a mistake.
We were told our daughter has an expected shortened life span – that she probably would not make it past the age of 2 (she is now 10 years old) and if she did make it past 2 that she would not survive into adulthood. Many times I thought – "this is it – this is the seizure that is going to take her" – seizures that would last up to 4 hours! She was having hundreds of seizures a day.
After a while I stopped getting upset because I knew she was a fighter and as Dale Carnegie would say - "Stop Worrying and Start Living!" I decided I could either spend my time being upset and worrying about whether Julia would be alive in the morning – or I could make “Quality of Life over Quantity of Life” my mantra. Every day we try to make sure that Julia has the best day she can. We don’t want regrets.
Too many people live a long life full of misery… I would rather live a shorter life full of happiness and surrounded by people that love me. Julia has that!
It did not take long to realize that there was no set of directions that came with our little shining star. I did not know where to begin, how we were going to pay for her medical treatments, medicine, or learn how to find funding for equipment she needed.
I again remembered why Dale Carnegie became successful – he wanted to learn about human relations and communications but there was nothing out there. So, he created it. He observed, studied people, and wrote about it. I decided to do the same thing.
Every night I would research for 2 or 3 hours every treatment, medication, and reasons for shortened life expectancy. We sought many opinions, went to conferences, took classes, and read many books. I asked as many questions as I could to every Surgeon, Doctor, Nurse, Physical Therapist, Occupational Therapist, and Parent.
Before long I was confident that I could save my daughter’s life if necessary – and actually do from time to time.
Then I started helping other families we would meet at different hospitals – sharing tips on how to make things easier. Soon, there was a waiting list of people that wanted help. In 2013 I made it official and started my own business helping those with Special Needs Children and their families.
My Grandfather told me “Erin, we spend most of our lives doing 1 of 2 things. Sleeping and working. So, you better be comfortable in the bed you are in and love your job – and if you love your job – you will never work another day in your life.”
Thank you for taking the time to read about us.
Golden Rays Of Hope
832 11th Ave
York, PA 17402