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Grandparents – An Ache in the Heart

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.

  1. December 3, 2010 at 10:45 am

    Sarah’s Grandma, I did not notice Ur name given, so excuse me 4 addressing U in this manner, tho I assume U would B proud 2 B! I could not refrain from Commenting on Ur thoughtful, heartfelt submission. TY 4 expressing exactly what hubby & I hav been trying 2 express 2 each other about how WE feel about the possibility of R 6-year-old grandson having autism. Comforting 2 know we R not alone…

  2. December 4, 2010 at 1:58 am

    Reading this was definately an eye opener for me. My fiancee and I just found out recently that our 2 and a half year old is autistic and have been struggling with this for the past month. On top of this diagnosis, we lost our home in Pennsylvania due to both of us losing our jobs and were offered the oppertunity to move to Texas. We took the leap and packed up and moved (leaving behind two older boys [15 and 20] as well as all of my fiancee’s family). It is so heartwarming to know that there are grandparents out there who care and want to be involved with their grandchildrens’ therapies and are genuinely compassionate to the situation. We do have some compassion (from family not very close geoprphically to us) but we desperately wish there was more and much more understanding (instead of worrying about how some may go on vacation this year). We fight everyday to just give our little man the best day he could have and try are hardest to work on his weaknesses and improve his strengths. To the lady that wrote this article… your grand daughter is extremely lucky to have a grandma like you. Keep the fight alive and keep raising the awareness.

    1in150.webs.com an online autism support community

  3. December 4, 2010 at 10:17 pm

    Thank you for being such a dedicated grandmother. Sarah is very fortunate to have you. Autismstorybook.co is a website dedicated to promoting autism awareness in girls. You can post a photo of Sarah and share her story. We will print a photo of Sarah and add it to our banner that we will walk with at the Walk for Autism Speaks in 2011. We want to get the message out there that 1 out of 5 diagnosed with autism is a girl!

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