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The Value in Life

The Words That Matter Most

I remember the exact moment I got the news, when my world stopped and for the moment -nothing else mattered. I remember the way the doctor led us across the recovery room and into the makeshift office of the medical tech I saw scurrying away.  Some guy who, at the doctors urging, left so fast, his abandoned cup of coffee still sat steaming on his desk. We sat talking until that cup of coffee grew cold.

 At first there was relief, I was strung out from sleep deprivation, and determination. I knew something was very wrong, but no one in  Arizona could figure it out. Thanks to my father’s celebrity connections,  Zoe and I had flown across the country to meet with a team of special doctors. 

  I made it through that meeting , learning a lot from the doctors words and more from those converstions that  followed.  Most doctors are practiced at the art of breaking bad news.

 Over time I have learned how much to say, how to have these conversations- and when it is best not to try. 

 There are curious strangers;They don’t deserve to know.  Friends; how much do they really want to know?  Family; how many times can you have to have the same conversation?  Spouses; I guess you had to have been there, it was more about the overall tone of what he said, not what he did say, ..  and your children ..talking to your children about their special needs, is a natural development. They deserve the truth, in kid doses. 

  O and Zoe were finished playing Barbies the other day when I asked them to clean up. Big sister O was upset that Zoe wasn’t pulling her weight , and Zoe was quick to defend explaining that she was tired, that she had to use her walker and that because it was harder for her , she was just slower. I listened from the other room, as she spoke the truth.

 When O began realizing that Zoe wasn’t going to “ learn” to walk, she started asking questions about her sister’s future. Kids talk about what’s on their mind and when she was ready for answers she began to ask the questions. 

 And we have to be ready- saving our tears for the shower or some other private moment. We have to be positive and not use words like wrong, doesn’t work, disability- words that unfairly define our child as not good enough.  By being positive, and using truth as our foundation, we can focus on our child’s unique differences and abilities.

 Like doctors- we don’t have to discuss everything all at once, that can be overwhelming. We can take it slow and be truthful. See if the simplest answer satisfies our child’s curiosity. A natural indicator of how much they need to know, what they are ready for. If they keep asking, we can gently go forward. 

 Olivia’s almost 11 now and I see her watching her little sister sometimes, with a new knowledge in her eyes, . and when she asks me “ Will Zoe ever..?” I tell her this truth..

Her sister always does more , than we ever imagine. We aim very high, and Zoe aims higher. The other day we were leaving an event and the kids wanted me to blow up some inflatable toys they received , but it was too hard. I tried to put them off until we got to the car. Soon after, Zoe had blown hers up completely on her own. I tried the other one. O tried the other one. It was hard, we each kept giving up. How did Zoe do it? O asked. I knew right away. Zoe tries hard all the time. She is used to things being harder for her and she doesn’t give up easily. For her most things are just more difficult to accomplish.

 Zoe and I were at the neighborhood water park again the other day, and as we walked into the kids pool, I could feel a strong pull from the waters current .The floor of the pool is very smooth and slippery. Zoe looked around at all the kids, playing water tag, some walking with ease. Holding my hand she looked down toward her feet and back up at me asking “ Why don’t my feet work in this water? Why is it so slippery for me?” 

I answered easily “There is a lot of movement in the water Zoe.. that makes it hard to keep your balance.  My feet are slippery too.”  And because Zoe now 9, understands she has trouble keeping her balance and the tools that help her , thought of a solution. 

 Smiling she said..  “ Well, they should make walkers for the water then.” and holding both my hands, one crossed low in front of her waist for extra balance, Zoe led us forward, walking against the current.