My beautiful six year old granddaughter has autism. It is painful to even think about it; to even consider that this lovely little girl is a “special needs” child. My heart aches to know that this is a condition she will have to deal with for the rest of her life. The worry weighs me down. How will this condition affect her life and her relationships? How will she live her life as an adult? How will she be able to work and support herself? As she goes through life, will she be able to handle the many thoughtless, insensitive people she will meet who do not understand her condition? She is so lovely; I hope her good looks will have a positive impact on her future. There are so many concerns! I sometimes wish I could “will” the autism away. If I could just close my eyes and concentrate hard enough, then it would evaporate. At times, I have even “bargained” with God. “Take it away from her and give it to me-or give me whatever you want. Just leave her alone!” no response. Actually, I am old enough to know that this is not how God works. Wouldn’t we all “bargain” away the problems and concerns of our loved ones if we could? I also ache for my son and his wife and their two other children. Sarah’s condition demands so much of each of them! The needs seem endless. There are MD visits, MD visits again, therapists, medication, a demand for endless patience, functioning on a lack of sleep, the need for additional financial resources and, then deep-seated compassion; all these issues which must be addressed on a regular basis create huge responsibilities.
Even as I occasionally wallow in self-pity, I realize that we are not the only people on the planet dealing with adversity. Why do I think I should be exempt? Why do I think I should coast through life while others deal with major adversarial issues? What am I thinking and saying with my “empty-headed words?” I cannot see the mind of God-as much as I try.
My concentration on the problem often obscures my vision of the many gifts present within it. I have seen my granddaughter, Megan, Sarah’s eleven year old sister, blossom as a caring and compassionate person. Megan fosters the art of communication with a little girl who has difficulty verbalizing and expressing herself. It really is a wonder to see this exchange of love. Megan possesses a wisdom beyond her years and a heart that has been honed by deep compassion and understanding. Little Tommy, Sarah’s four year old brother, is too young to understand the implications of Sarah’s occasional to frequent aberrant behavior, but he still loves her and is unsparingly generous with hugs, kisses, and sharing-at least most of the time! His extensive language skills also challenge Sarah’s attempts at verbalization and communication. When I hear Sarah say, “Grandma, I love you,” my heart melts. Those words take on new meaning when there is a serious language deficit. Words become more important and more meaningful in the midst of paucity; they are no longer taken for granted. Sean and Sharon are the epitome of selfless, caring, and compassionate parents. I am sure that Sarah’s condition has stretched them beyond where they ever thought they would have to go. No saints have ever worked as hard or loved as totally! Their unending selflessness has become a beacon of light in Sarah’s life. Would all this personal growth and development have happened without the presence of Sarah’s condition? Who knows? Why does one need adversity to grow as a person? But, upon reflection, it seems to me that the human heart needs outside forces (both good, bad, and in-between) to help it stretch and grow. Carl Jung once said, “Out of opposition comes new birth.” I know the full answers are within God’s purview and not within the limitations of my own mind-if only I could always remember that!
My husband and I, now in our retirement years, have always prayed that our retirement would be meaningful. We did not want to just fun and frolic in our golden years. We wanted a deep spirituality in this third phase of our lives. Our years are numbered; we are getting closer to the day when we will meet the Lord and we wanted to continue preparing for that meeting in a significant way. Little did we realize that in our retirement years we would be very involved with helping Sarah and her family! We did not anticipate the challenges, the work, the love, that would be involved in being present to them. We did not anticipate that our own personal and spiritual growth would be expanded and stretched. Ironically, nor did we anticipate the unbelievable joy that we would experience as we journeyed with them! As parents, we did not always fully enjoy our own children because we were young, inexperienced, and filled with anxiety about always doing the right thing. We mellowed as we aged and so, as grandparents, we were better able to appreciate and marvel at the growth of children. We have witnessed the incredible expansion of the human heart in the midst of Sarah’s condition. We have witnessed Sarah’s parents and siblings lovingly interact with her. We have also seen dedicated doctors, teachers, therapists, and counselors strive to break through the barriers so that Sarah will maximize her growth as a person and an individual. We have seen ourselves become more fully aware of the fact that limitations and disabilities are not always visible. There are many disabilities that are unseen, hidden deep within the human heart and mind-even within the body and the internalization of that fact has made us more compassionate people. We have come to learn that there are many gifts to be found in the midst of adversity.
There still remain more questions than answers but, ironically, one can only play the hand that has been dealt to you. This is the only life we have and so the challenge is to do the best we can and know that God journeys with us during the good days and the bad days as well as through our doubts and fears. There is still much uncertainty about Sarah’s condition. I do know, however, that the incredible amount of love surrounding Sarah will help her to grow as a person and to ultimately reach her full potential. And, when I am gone, I will still love her.