January 2, 2017
Here I sit looking at a new year. I'm 50. My kids are 21, 19, and 15 (almost 16). Daniel will be in public school until 21. Just thinking about him mostly. And what things I can do to help him. But I also have to make considerable progress, on me. ME. Can you believe I am saying that. My Mom had a heart attack on Christmas this year. We all need to realize that our health choices have consequences (when we are in control of them of course). I suffer from Post Traumatic stress, and intense anxiety and depression. And of course, Fibromyalgia.
I worry almost constantly about money. About paying bills. About my children's future. About Daniel. Life is really hard, as a caregiver. You are responsible for the lives of others, making it really hard to care about yourself. Which is really weird for me, considering I am self admittedly a once very very self centered ego focused person. Middle child syndrome? Maybe. I enjoyed being fashion forward and into looks. And health. And then I had a child with massive disabilities and felt selfish caring one iota about my own needs. Because his life depends on me. Plus, I got really sick. deal with massive pain every day.
New Year. Well. More time to spend on meditating. On encouraging others. On writing. On learning how to be healthier WHILE having fibromyalgia, because it doesn't ever go away. More time for romance with my husband. Yes. Massive issues with money, stress, medical care, all exist and are growing. But we have to train our brains to deal with those things, BUT not put them in front of the things that make us happier and healthier. Ironically, the happier and healthier we are, the better we do with managing our financial lives. The inherent problem with caring for a severely disabled and medically fragile person, is this... at any given second... WHAM... another $10,000 expense hits. and a hospital trip. And seizures come back. Or spasticity goes out of control.
Statistically, caring for a disabled person in your home, will cost quadruple, if not more...the cost of raising a typical child through their college years. Probably more...because of home accessibility, transportation, and the time you have to give up that you could have been working.
The Love... is like an open bank that pours like a never ending river. But in our society, people like my son, are a cost. A bill. Something people turn away from and try to ignore if it doesn't affect them personally. But Daniel is a human being who deserves a good life. And a normal, hard working educated family like ours, is crippled from the expense. Imagine a single Mom who is 18 and has a disabled baby. I try to advocate and be a source of support as much as possible.
New Year? Yeah right. OK. My 2017 will be a continuation and growth of my YouTube channel "Julie Hasselberger" The journey of me. Of my life as a Mother who is 50. And has a severely disabled son with a rare brain deformity... love, life, and laughter. Always reaching out to encourage others to join our journey. More time for Yoga. Losing weight... yes... I really have to try. And most of all, even with not sleeping nights, and suffering from massive anxiety about finances, I have to continue to dig deep and find positive ways to keep my heart strong, and not sink into that deep dark depression that, because of my history, always lingers right there on the surface.
My life, in 2016, was NON stop caring. We had no break. No vacation. Saw no beach. Felt very little "relaxing". But we did see one daughter go off to Ireland to study for 4 months, and encouraged one son to continue his incredible passion and talent with music, via a jazz instructor who is amazing. Renovated a Mold infested bathroom... only to find out the cost was triple the estimate and landed us with another big loan on top of all of our other loans. And now, the bath is leaking again. More holes to repair. But that is just home ownership.
Daniel's big van... needs new tires, and we just can't afford the $1500 charge for annual maintenance on the lift. We would LOVE a new minivan with a manual style lift... but they are expensive. Of course. Our other car has 198,000 miles on it!!! We teeter. and we survive. And work hard. really hard. REALLY REALLY REALLY REALLY hard.
Because life is about family. And taking care of family. And giving of our hearts to those that matter most, in the moment. In the minute. While we are here.
And I suppose that is what 2017 will be more of. While we wait nervously to see if Daniel's benefits that have helped us so much, will be taken away.
We love. We care. We want to make a difference in this life time. And making a difference means being brave and stepping out of comfort zones, trying new things. Even with crippling health (mine) and exhaustion and financial stress that is completely unrelenting when you can only rely on one salary.
One day at a time. Making the most out of smiles and realizing that life is so freaking fragile. When we die, money will no longer matter. Ironically, lack of .... puts many people into their graves.
Daniel is a teacher. He has a message for this world. And I am his voice. Through the vlog, we share that voice. We have fun too.
Happy New Year. Please spread kindness. We are all here together.
Julie Hasselberger
January 2 2017
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