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Endless Wishes

Jon-with-Candle

After a year of Special Needs Dad 365 on Facebook, I thought it was the right time to get back to our official blog space. I have taken a little time off from writing to let the creative mind have a bit of a break. Coming up with a different topic every day for a year was difficult. Especially on those not so good days. I'm happy to say that the Livy's Hope blog is back in action!

It's fitting that my first blog comes as a result of my birthday this past week. For years now, when family asks what I would like for my birthday, I don't have an easy answer because the one thing I really want, they cannot give me. However, it was still a good day. We spent some time as a family going out to eat the night before and my mom took us out for lunch the day of and enjoying one another's company.

Birthdays, like the beginning of a new calendar year, are like a fresh start with hope and potential. As is tradition, blowing out candles gives people a chance to make a wish for the year ahead. Over the last 15 years, every candle I have blown out has been a wish for Livy and no seizures. This year was the same. Unfortunately, that wish and the hope of it coming true, like all 14 that came before, ended only hours after it was made.

It's interesting how an act as trivial as blowing out candles gets wrapped into the life of a special needs parent. There is seldom a break from the thoughts of what has to be done as a caregiver or what potential emergency may be on the horizon. The stress that comes with watching your child struggle with a health issue is continuously present and the desire for it to end is at the forefront in many wishes and prayers.

Aside from the daily responsibilities that come along with a medically fragile child, our hopes and dreams for our kids are always top of mind. I have wished for an end to seizures after pulling apart a wishbone, dropping a penny into a fountain, watching a shooting star, seeing the first star at night, and more. I have prayed before I went to bed for over a decade that Livy would get a reprieve. Thus far, my wishes and prayers have gone unanswered. I like to think that they have been heard but that there is a bigger picture and purpose yet to unfold.

For now, I will continue as always to dream of better health for Livy. Just as her seizures seem to be endless, so are my visions of her not having them. I will continue to start each year with the thought of what a life without seizures could be. I will enthusiastically drop my pennies into the water and contemplate how far Livy could progress without so much medication. I will gaze up at the stars and hope there is a power that can grant my request. When you have tried over a dozen medications and multiple surgeries, sometimes all you have left to do is wish.

A Father's Journey of Hope

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Comments 2

Guest - Barbara Talbi on Sunday, 26 January 2020 18:23

Happy Birthday! Sending positive thoughts that this year will bring fewer episodes than the years before. We can never give in or up.

Happy Birthday! Sending positive thoughts that this year will bring fewer episodes than the years before. We can never give in or up.
Jonathan Scheinman on Sunday, 26 January 2020 19:46

Thank you Barbara. I agree. We should never give up hope!

Thank you Barbara. I agree. We should never give up hope!
Guest
Friday, 28 February 2020

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