He's trying to tell me something.
But like a bud, unopened, his thoughts remain tightly wrapped within. I long to get inside his head. To know what he's thinking. How much he understands.
I want to see the world through his eyes. Know of his pain and fears, his hopes and joy.
If only I could break through that wall of silence and frustration.
Then, maybe, I could really help him.
I provided him with physical, speech, occupational and feeding therapy--sometimes all in the same week. I consulted with the best and most acclaimed therapists in the valley. We even attended a five week behavioral feeding program in New Jersey.
One of the many doctors I saw said, "I admire a mother who is prepared to go to the ends of the earth for her child."
"We recognize you're a force to be reckoned with," another doctor said.
Maybe so.
But I didn't cure David of autism.
I can't fix him. I can't make it better. I can't give him a normal life.
I get to stand by, knowing of all he'll never do and all he'll never become.
Maybe he's unaware of his many losses, but I'm not.
So I hurt for him.
He'll always depend on others, never knowing the satisfaction of caring for himself, or the freedom of independent living. Confined to his own lonely world he'll never know the joy of marriage or the tenderness of holding his own child.
As he struggles to reach out and connect with others, I wonder if he'll ever have a friend.
I asked a 70-year-old friend of mine who has a disabled child if the pain ever goes away. She smiled wisely and shook her head, recounting how she now feels sad her 40-year-old son will never get married and have a family of his own.
"Each life phase brings a new reason for mourning," she explained.
Our hearts are touched by these beautifully expressed thoughts and feelings. I read this aloud as Grandpa Stoll listened, and he is so moved. We love and appreciate all of you!
ReplyDeleteI also have a severely autistic son. He is 17 and still nonverbal. Tonight his 10 year old brother had friends sleepover for his birthday. The boys stayed up and watched movies and played video games. I could tell Caleb wanted to stay up and watch the movie too but it wasn't his party. Tonight I grieved for the fact that Caleb has never been able to have friends over for a sleepover. Nor has he ever been invited to a birthday party. I feel your love and sadness. Thank you for so beautifully sharing not only your heart but the heart of so many mothers out there.
ReplyDeleteGenie, I'm so sorry. I often struggle with a lot of these same feelings myself for my 5yr. Old son with disabilities. Its so hard sometimes. Its also hard to find someone who understands or is willing to listen. Thank you for sharing. :) Sending hugs and prayers.
ReplyDeleteGenie, I just read your birth story. I had no idea everything you've been through! What a awful experience for you and David. I'm sorry for all that you've been through. Where do you guys live? I live just 20 minutes west of the airport. I wonder how close we are??
ReplyDeleteThe Primary leaders and I love having David visit our singing time. I believe that he communicates his wishes in nonconventional ways. I am glad that he can walk and move about freely. I can only imagine how hard it is being his mother, but I think you do an amazing job!
ReplyDeleteI can share with you in those pains because I am also a parent of a child that has autism. It does hurt. Even when we grieve and for so many individual reasons, we are never through it or over the pain. We just move through it for the time until that pain pangs at our heart again. Then we work through our thoughts and our emotions. Someone loved me enough to give me some great advice. She also has a few children on the spectrum older than mine. She said to me, don't have expectations so that you can celebrate EVER success! :) I love that! I have since taken the time to be kind to myself and to my son and let go of expectations and to just love him and who he is and enjoy watching him grow at his own pace and in his own way. It has been something I have been grateful she shared with me. Before that I would cry at every missionary farewell, at every wedding, at every sport event....I just wanted my son to get to be apart of everything the children around him were doing and being a part of or hopefully someday going to be a part of. I have since come through those pains with some acceptance. It still isn't easy...I still have moments when my heart pangs in grief over him not being a part of something others are and at the same time glad when he doesn't know to miss it. This entire life will be a journey the touches many emotions as a mother. You just do your best and live with the faith that this life isn't all there is. I am here for you. :)
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