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Don't Miss the Dance

My pregnancy was the perfect pregnancy. I gained just the right amount of weight, I continued to exercise, my medical profile was perfect. My son, Todd, and I would dance in the living room, play in the yard, and bike ride. I worked, re-did furniture and painted the nursery preparing for the arrival of our baby.

The minute I saw Sophie’s face I thought, “oh – that baby is the spitting image of Todd.” When the doctor told us the baby was a girl, Jim began to cry saying, “A boy and now a girl. Life is perfect!”

As time progressed we, of course, learned of Sophie’s medical needs. Undiagnosed seizure disorder is what the main medical diagnosis became and over the next few years, a wide range of other medical issues that unfortunately became part of our daily life. Sophie did smile in between the constant screaming so we began to see a little person who interacted with us occasionally. We also became accustomed to spending hours in the hospital during inpatient stays or outpatient visits.

Little did I know that God would again challenge us with the birth of premature twins and subsequently the death of Claire just 18 months after Sophie's birth.

Some people would say that either I really needed a wake up call or the devil was just out to get us. I have come to realize that it isn’t about a person bearing their cross for their wrong doings, or being sought after by the devil. You see, we’re all given a chance in this life to prove ourselves. Regardless of the hard knocks that come our way, it’s what a person does in response to the hard knocks that determines their path in life.

People would often look at Jim and me and say, “how do you do it?” Our learned response now is, “We had no choice.” I guess that’s not totally true. One of us could have left the other one to deal with it. One of us could have responded with anger or addiction to drown our sorrow. Thankfully, we did not. We have both stuck it out and have actually fostered a greater love & respect than we had for each other before our children were born.

So why did we have this happen? Jim may have his own thoughts because, even though we’re in this together, we’ve had our own personal experiences to draw from. I believe God had figured out long before I had even planned my pregnancy, that my path in life would not be the traditional parent path. Does He know how we will respond or choose to respond to the paths He sets for us. I don’t believe so. I feel He sets that path and we can choose to snooze and lose or rise above and make the most out of the situation at hand. Perhaps some of us need an extra push. Perhaps some of us just need to be reminded that He is in charge.

I could plan a pregnancy and even plan according to the textbooks, but I couldn’t plan on His intervention in giving me the greatest gift of my life – learning to parent in the untraditional way and becoming the person I am today because of the lessons I learned along the way.

Both Todd and Caitlin, around the age of 10, complained about Sophie. “we never get to do anything because of Sophie.” “She is so loud at my concerts, can’t you keep her quiet?!” They would ignore her in public and I let them, but at home there was no sympathy. I would respond that God would not have placed them in our family if God didn’t think that they would be the perfect sibling for Sophie. They may not like the fact that their sister was disabled, but they needed to understand that Sophie probably hated the fact that it was her instead of them. They may not understand why, but honestly, I didn’t either so just get used to it and deal with it. No sympathy.

I look at them now and I see two fine young adults. There are many, no doubt, but these two have lived through adversity, embarrassment, harassment, tears, screams, seizures, g-feeds and many other things that not many people their age have the wonder of experiencing. I say "wonder" because looking back over Sophie’s life, I feel this way about our family.

Our family has become richer – each one of us in our private way learned from Sophie. We learned to love her and she loved us. We each interacted differently and she, as well, interacted differently with each of us. The saddest thing I can say is that I wish we had cameras for the many family moments we shared where Sophie was as much a part of the conversation with her nonverbal behavior as we were with our verbal. We were a unit and she was very much at ease when it was just our small family unit. One occasion I recall was playing peek-a-boo with Caitlin at the dinner table. Sophie was in her chair and Caitlin kept peeking out behind the chair while the rest of the family said, “peek-a-boo!” A few minutes of this game and we heard Sophie in her typically delayed response time say, “peea booooo!” She jumped with excitement and we laughed. Golden!

When you marry & begin a family, you don’t dream about becoming the parent of a special needs child. When your children are born, you don’t think about the cool wheelchairs, awesome light boxes & communication devices or feeding pumps you can buy. You don’t consider that if your child is disabled, you won’t have to pay for a college education. When your child graduates to their first bed, you imagine them learning to sleep without rails and you dread the fact that they can walk into your bedroom in the middle of the night and ask to get in and sleep with you. When you parent a child with special needs, you can only yearn for those moments.

We dreamt for Sophie, but we dreamt different dreams than most parents. I once wrote a poem for Sophie, just as I wrote a poem for all of my kids. Not because I'm good at poems, mind you. Only because I wrote thoughts at that moment and it was a gift for each of my children. Sophie's poem was called –

“A Parent’s Dreams”

Do I dream for you? … Yes.

Peace & Contentment are what I dream for you, smiling and laughing the whole day through.

To wish that you could squeal with delight when opening gifts, decorate cakes, swim like fish.

Do I dream of this? … No.

I dream of simpler things, like blowing out candles and pulling on strings, with fingers that move the way you want them to.

Do I dream for you? … Yes.

Do I dream of normalcy? … No.

For what is normal is determined by God’s greater powers.

Our life is normal, for otherwise, it would not be ours.

Our family became stronger – we learned to deal with obstacles. We’re not fool proof – and I’m sure there is more out there for us to experience, but we are stronger because we learned to work together. We took our Make-A-Wish trip the Christmas before Sophie turned 18. We had not traveled in an airplane since she was six. Before we departed our home we all sat and talked about which piece of Sophie’s equipment each person would be responsible for while boarding & deplaning. We all agreed that we needed to get along and not snap or fight. We would all be stressed and what we would need most was to suck it up for the team, close our mouth and go with whatever happened. We had a fantastic trip & built wonderful memories for our little family unit. Memories that sustained us because 4 months later, Sophie died.

I began writing this a few years ago and finished it this week, 6 years since Sophie’s passing – April 29, 2010. Sophie’s Run @ Lake Waukomis will be held on May 7 this year – 6 years to the day of her funeral. Funny, how that date was chosen a year ago and I did not think about it until now. As we gather for our post-event meeting this year – it will be 6 years to the day that Sophie’s Eye Gaze computer was delivered and I had to refuse the shipment. I hope that we can assist many families and students with their communication this year so that they can alleviate some of the frustration that nonverbal communication or no communication at all, creates. I certainly hope none of them need to refuse a shipment!

As our Sophie theme song goes, sung by one of Jim’s favorite musicians--–

Our lives are better left to chance, I could have missed the pain, but I’d have had to miss the dance.

In gratitude,


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