“Childhood is what you spend the rest of your life trying to overcome. That's what mama always says. She says that beginnings are scary, endings are usually sad, but it's the middle that counts the most. Try to remember that when you find yourself at a new beginning. Just give Hope a chance to float up. And it will.“
Some of you may recognize this quote from the movie Hope Floats. Ironically we watched it for the umpteenth time last week. Sandra Bullock’s character tells her distraught daughter this anecdote to calm her sadness about her parent’s impending divorce. It seems very odd for some reason that both Joan and I can almost recite this line word for word. Evidently our sub consciences relay this message to us anytime we’re facing a troubling situation involving either of our children.
These days I honestly don’t think about losing Ben. Although it is a very possible outcome I try as hard as I can these days to focus on the here and now. I know for a fact that I would gladly take Ben’s place in each and every difficulty in his future including the final journey we all will have to face one day. Nothing about that has changed since October 2, 1999 when he became the second child we were gifted with.
Tonight has been especially emotional for all of us since we are putting together a compilation of pictures (with music) to use as a loop that the folks at EdVenture will play in the background when Ben and I take a break on Saturday. Looking back Hope has been fleeting many times over the past 8 years. From knowing something might be wrong with our son during the few remaining months of Joan’s pregnancy, his unexpected arrival at 7 months, to seeing the obvious differences between him and our daughter has made us fear our future. Fear is our ultimate enemy. It steals our faith, our vision, and our Hope.
Three weeks into his young life we were called to the hospital in the early morning hours to say goodbye to him. Looking into the tear-filled eyes of the nurses and doctors present that day we should’ve realized that Ben had already changed the lives of the very few people that knew him at the time. We should've known then that Ben was a very special child and the fact that he survived is often a reminder that many things in this world are out of our hands.
When we arrived home with Ben on January 3, 2000 we were terrified by the amount of work that would be required to keep him alive. We had plenty of nursing care but the nurse’s visits to our home would dissipate into receiving mostly daytime coverage. At nights when things were darkest ther was much weeping in our home. Even Jessie began sleeping in our bed afraid that we wouldn’t wake up to check on her brother.
Almost eight years years have passed now. Ben is thriving as an exceptional child. In these few short years he’s shown an incredible amount of intelligence by developing his own methods of communicating with us, an understanding of situations he’s placed in and acting accordingly, and he has a tremendous desire to accomplish things that we thought were not possible.
The journey we face is most definitely a difficult one. As much as he is determined to walk we know it may not happen. his ability to speak in terminology that everyone can understand is something we feel doubtful about. Many things a father wants for his son won’t come to fruition. In our eyes now those things are fine with us. We have Ben. He is the incredible little motivator in our world and we accept it without being bitter.
Our son is a beacon of joy in everything he does. From painting to singing songs he is all that a parent could want. All of us (me, Joan, Jessie, his nurses, his extended family) are amazed at how much Ben enjoys life. I think that is why he is with us and didn’t answer the call of the Heavenly Hosts. Despite his inabilities Ben used his abilities to share joy and purpose to the world around him. Let us say I am one lucky father!
Hope is all we have. We are promised that from God and that is an incredible thing for those of us raising special needs kids. I'm not preacher and I would be the first to admit my lack of faith in the hard time. Our family's spirituality is not the purpose of this blog and never will be. But from my upbringing I remember some of the most important words of the Bible. The Apostle Paul tells us that “faith, hope and love (1 Corinthians 13:13)” are the keys to life. Because of Ben we have each of these. For a little man without much of a voice he has much to say.
That Hope was made so clear to us once again today at Ben's first therapy session with Kathy and Jessica (pictured above). Our son showed great strength and determination in his first session with them. His joy was most evident. Take and use this blog entry for what it's worth. We take great comfort and an endless amount of Hope into our future.
Thursday, September 20, 2007