June 23, 2017

Jonathan Scheinman

Fatherhood has been both the most rewarding and most difficult experience of my life. I expect that many parents who have kids with special needs or who are battling diseases or disorders feel the same way. I have such a sense of pride for what my 12-year-old twins Hailey and Livy have become and the time they have spent giving back to others. Their relationship is a wonderful example of how the love between two sisters can be a source of tremendous inspiration.

But I have this great sense of guilt as well...am I helping Livy enough? Am I spending quality time with Hailey and doing the typical things dads do with their daughters? Traveling down the road of life is hard enough but doing it when there are so many unexpected twists and turns and feeling like I have no idea how to drive the car of special needs I was given can be overwhelming.

Sure, over the years, we have gained experience in certain areas such as dealing with medications, trips to the hospital, insurance companies and the process, doctors’ appointments, medical equipment, etc. But it never ceases to amaze me how much we still don't know and how lost we feel at times especially when we think about the years ahead.

The journey is very stressful and places a great weight of responsibility on the backs of those traveling down it. Relationships are strained and too often, brought to the breaking point. But when we look back and see how our lives have been impacted and how the lives of others have been changed as well, we find solace knowing that we have done our best with a very difficult situation.

However, on many occasions, I have also found myself attempting to somehow justify Livy's condition with clichés such as, "Everything happens for a reason" or, "You are only given as much as you can handle." I don't know a parent who has been through a difficult time with a child that thinks any different or hasn't asked, "Why is this happening to my child?" It takes a tremendous physical and emotional effort to get through some of the darkest of days.

So, I would like to say that If you are a father or a mother and are just starting down the road less traveled or have been on your journey for years and are tired and worn, please be strong. Keep pushing forward and look at all the goodness that has been brought to your life. Don't think of what you have sacrificed but think of what you have gained. Don't ask why? Ask what am I going to do about it? Don't look back and wonder how your life could have been different or if you could have done something better. Look to the future and search for a way to change the world because of what you have learned. You will likely never know why this is happening to your child. The loss of control will be an area of your life in which you will constantly struggle. But we all have the power to choose what we make of the situation in which we have been placed. What you do with that gift is up to you!

This video is a day in the life of Livy. I filmed it when Allison and Hailey were away. Many have wondered how our lives work. Well, this will show you much of what we have to do to make it work. I am dedicating it to all the fathers and mothers who give everything of themselves to ensure their special kids live the best lives they can. It goes without saying that the most treasured present I have ever received, aside from marrying my best friend, was the gift of Hailey and Livy. I just hope, as many parents do, that I am worthy of this amazing responsibility and incredible blessing. Sending you all much love and the greatest of respect.

Click the Youtube link to watch a video that captures the struggles and joys Livy and her family live on a daily basis: https://www.youtube.com/watch?v=pG4b9R798cs#action=share