Saturday, May 7, 2011

TWINKLE ON YOU LITTLE STAR, A Mother's Thoughts


It is 9 a.m. and Timothy is already outside. I am gazing out the window observing as he happily plays with the stream of water leaking from the garden hose. His mouth is moving so he is probably singing his favorite song, "Twinkle Twinkle Little Star". And his sweet face is gleaming with that shimmering smile of his. It is that kind of grin that lights up his entire face and beams from his bright blue eyes. His countenance is one that melts the heart. And this morning I am reflecting, remembering and realizing. I am seeing beyond what is visible. Something very special is being revealed and the revelation that there is more going on here than meets the limited human mind and reaches toward the depths of the eternal heart.

Six months ago, our precious 4 year old was diagnosed with moderate to mildly severe autism along with severe developmental delays. What we already suspected and feared was true. At the age of 3, Timothy mysteriously began to show signs of regression in his speech and overall development. We don't know why. We don't know how. But we do know that it is what it is, Autism. I had to go through my own time of grief. It has been a perplexing and painful season. And I wrestled with feelings of shame and guilt concerning my grief over the thoughts that my child was not "normal". People would say,"Well at least he does not have cancer." Or, "How do you know for sure and how did the doctors come up with that diagnosis?" Well meaning friends minimized my pain with their words, questions, and doubts. I really did not expect everyone to understand. However, I am very blessed and grateful for those family and friends who simply reached out with compassion and support. It was an indescribable pain knowing that things were going to be very different for Timothy and for our family. The dreams I had for my child were dead. I had to grieve, to mourn , and to process the shocking truth.

Then it was time to get busy and move forward by researching, learning, making calls and talking to experts and other parents of children with autism as well as finding speech and occupational therapy for Timothy. Talk about overwhelming! I thought," How in the world am I supposed to balance this with the responsibility of all the other children I am a mother to? And what is going to happen to Timothy? What about his future?" I felt like I was drowning.

Each day since the diagnosis, I have had to give it to God and I say, "Lord, I don't know how we are supposed to do this, but I trust that You know what to do and not do. So, I give it to You. I give you little Timmy. I give you this family. I release my fear of the unknown and choose to trust You with it all." Has the fear completely left? No. I face it every day. You see, I often feel fear but I do not let it have me. For it is in the face of fear where I am trained to be courageous. I am learning that it is not fear itself that consumes me for fear will come. But it is how I respond when it threatens to consume me and control me.

And many days I feel so inadequate, lost and unfit as a mother. Once again, I take it to my room and I pray again to God. Basically, I am simply living on a prayer. And to be perfectly blunt, I am learning that living on a prayer is the best and most productive way to live.

Yesterday, I took Timothy to a make up session with his occupational therapist. He normally goes every Monday. However, there was a special blessing awaiting. When we arrived, Michelle greeted Timothy as she always does. "Hi Timmy! We are going to play in the barn today!" Timmy's face lit up because he loves the barn as it is a large room set up with a small trampoline, bowling, large mats for rolling and jumping, and other fun activities designed for sensory and physical development. The atmosphere of the barn was different this day because there were more children present. I noticed a little boy in a wheelchair who was being assisted by his therapist with strengthening exercises for his upper body. He was watching every move Timothy made as he energetically ran around exploring everything in sight. When Michelle placed him on his tummy on the large platform swing, Timothy began to bellow out his favorite song "Twinkle, Twinkle Little Star". He sang it in his own little language but he had the melody down pat. The child in the wheelchair began to giggle with delight. His therapist said, "I have never seen him like this. He usually cries when other kids are in the room." Then, the two therapists began to discuss the possibility of changing the sessions so the two boys could be together because of the "positive energy" (as the therapist called it) Timothy exuded.

Here is this little guy named Timothy. He does not have many words. He whispers most of the time when he does speak.Yet, through a simple song, a happy countenance and a brilliant smile he touched a little boy's life. And he touches mine everyday. It may not seem like a big deal to most. However, when you live with autism, every moment matters. Every milestone is significant. You know, I am the one who is truly blessed. I am changing for the better because God has given me the privilege to be the mom to 11 very precious children. However, there is something about Timothy that is leading me in a new and profound way. I am learning to slow down and to savor simple accomplishments. I am seeing that a person can be deeply touched not so much through words but through a smile and a joyful countenance. And my vision is enlarged because the purity of an innocent child can make a significant impact on the lives around him. Also, I am considering that maybe the things we label as abnormal are not so abnormal after all. I find myself, like Timmy, singing and just enjoying small moments. Just as this quote says, "We can sing our cares away easier than we can reason them away."

Timothy, you will go far in life. God has amazing and unfathomable things in mind for you. I am seeing it more and more. It will not be what I imagined , it will be much better! So I sing to you Timmy, our little shining star. I pray that your light will never fade and that your life will lead many travelers who are lost in the dark toward the true light!

Twinkle, twinkle, little star,
How I wonder what you are.
Up above the world so high,
Like a diamond in the sky.
Twinkle, twinkle, little star,
How I wonder what you are!

When the blazing sun is gone,
When he nothing shines upon,
Then you show your little light,
Twinkle, twinkle, all the night.
Twinkle, twinkle, little star,
How I wonder what you are!

Then the traveler in the dark
Thanks you for your tiny spark;
He could not see which way to go,
If you did not twinkle so.
Twinkle, twinkle, little star,
How I wonder what you are!"

(Written by Jane Taylor 1806)