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A New Journey

October 13, 2011

“It’s the heart afraid of breaking that never learns to dance
It’s the dream afraid of wakingthat never takes the chance
It’s the one who won’t be taken who cannot seem to give
and the soul afraid of dyingthat never learns to live

When the night has been too lonely and the road has been too long
and you think that love is only for the lucky and the strong
Just remember in the winter, far beneath the bitter snows
lies the seed that with the sun’s love
in the spring becomes the rose.”  – Bette Midler



Mary’s birthday is a big deal, not just because it’s her 2nd birthday, which is great all by itself, but also because several doctors cautioned us it may never come. It is also bittersweet. It is a poignant reminder of all the things she “should” be doing and hasn’t done yet. It is also a reminder of the things she had been doing and has forgotten how to do.  A time to reflect on what she has lost- the words, the sign language, the eye contact, etc.  Also a time to celebrate what she has gained- she can crawl, she is walking with the help of a walker, and now finally starting to take those first unsteady independent steps.

I found myself unable to shop in the toy store for her one night. In the middle of the store, I found myself in tears. It was so overwhelming, with so many choices and no idea what she would actually like or even be able to use. She just isn’t interested in most toys, and is certainly not able to play with “age-appropriate” toys. Then, in the midst of my mini-breakdown, a toddler starts running around me to get away from her mother, and talking back to her, “no, I want the pink one.”  I couldn’t handle it.  Mary should be able to do this.  She should be running by now,and talking by now.  That was the last straw, I had to leave.

I felt so guilty for my little self-pity party. How could I possibly feel bad for myself, when I have been blessed with such a beautiful family?  Mary doesn’t feel bad, why should I? And most days, that is exactly how I feel.  She has brought together groups of people in her circle of love and prayer that never would have known each other, if not for her.  Her journey has shown us a new world of compassion and strength that we would not have otherwise experienced. She has shown us just how miraculous each precious milestone accomplished is – no matter when it is accomplished.  Though she has, thankfully, had very few true medical crises, the doctors’ have several time assured us that our time with her may be brief. Having watched one dear friend bury her own very young son, we feared that reality each day. But instead of waking up with fear in our hearts, each morning we wake with absolute gratitude for the gift of one more day with this precious child. So how could I possibly feel anything close to grief or sadness in the toy store, when I am shopping for such a wonderful celebration. 

While there is absolutely a sense of grief for many (maybe not all) parents of special needs children, we really can’t afford to let ourselves live there for long. Sure there’s a sense of loss of the expectations for who the child might have been, if  not for the disability.  As acceptance replaces grief, though, many of us learn how something that seems like a disability can actually make that life more meaningful in some way. All three of my children, but particularly Mary, have overcome such obstacles and brought together so many people in the process.  As Mary has grown into her autistic self, as some might say, we are discovering that there is a LOT going on inside that oversized head of hers. It’s wonderful and fascinating.  It is also something of a relief. Perhaps these “regressions” are not heralding some frightening terminal diagnosis. Perhaps they are not regressions, but just that her brain is switching over to a parallel track- she’s experiencing life in a different way, but still enjoying every minute of it. I hope that we can preserve the innocence and wonder with which she approaches every day as an autistic two-year old as we teach her how to get along in our overwhelming crazy “typical” world.  She amazes me each day. Happy Birthday little girl.

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