Category Archives: Fizban

Why? To See the Leaps

Scoot on little K.   The video is priceless, but I will not share here for privacy concerns.
Scoot on little K. The video is priceless, but I will not share here for privacy concerns.

Some times, it is easy to forget how far we have come and to expect less from our children than they are capable of doing. In the past week, K has surprised us twice, showing her abilities for cognition and motor skills far outstrip our expectations.

When you have a blind developmentally delayed child, it is easy to see her as the energetic ball of destructive energy who cannot sit still long enough to have a swallow study. Yes, she has just recently started playing with dolls, a developmentally appropriate toy. Still, we did not think she would be upset over our quietest dog leaving to go with another family. K has learned to stop tripping on the dogs, and she likes to feed them from her high chair, much to our annoyance. However, K never seemed emotionally attached to them or Fiz in particular. As Fiz’s new owner came over and talked about him and his new life, K did not seem to pay particular attention. However, as they took him outside to take to their car, K burst out in tears. We rushed her out to give her a chance to say goodbye. Her emotions are appropriate for any age, and we obviously need to do a better job giving her a chance to express them. It must be frustrating for her to be so unable to express herself, as learning to talk is currently a huge struggle.

Then on Sunday, K surprised me again. When we go outside to play with the neighborhood kids in the cul-de-sac, K can usually be seen chasing behind a random kid on a bike or scooter. We bring her tri cycle out, but she usually looses interest in it quickly as peddling is a bit beyond her thus far. Still, we always give it a go. Then on Sunday, one of the little girls got off her scooter to try to help K ride her scooter. K was in heaven. Suddenly all that time she spent chasing the big kids paid off. For us, trusting her to have playtime with all the other kids paid off too. Just watching her scoot was price less.

It made me think about our family routinely exceeding what I think are reasonable expectations. When I think about A’s heart surgeries, stroke, and gastro intestinal issues, I am amazed to watch her ride her bike for hours with the other kids and then go home to read and calm down. I look at O, born at 24 weeks and later surviving brain bleeds, and I realize he is lucky to avoid being delayed. He is smart and physically gifted, even in his habitual careless destruction and bursts of anger. How did he beat those odds? Finally, I look at K, and I realize we have gone three for three.

Having these thoughts gives context for the answers to the “why” questions. It is funny because I never think raising them is so much harder than any other kids until we try to prepare for A going to camp and fill up all 15 lines on the form for medications she takes. We just do it. Then I look at a day taking care of K written up for social services, and it takes more than a page too. It looks so much more impressive written out than it feels when in the midst of task A to task Z. We just do them, as we hope for more moments like Sunday.

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2012 The year of No Stops

In the musical Rent, the song ‘Seasons of Love’ asks how we measure year.  Is it in day lights, sunsets, miles or strife? It suggests we measure the year in love.  By this measure the past year has been an incredible one.  Why stop? “Five hundred twenty-five thousand six hundred minutes” hardly seems enough.

This past year felt like one lived without breaks.  Until the middle of December it never felt like I needed them.  A year lived without stops left me running a half marathon at a pace I wouldn’t have dreamed possible. It left me averaging 6 hours of sleep with every minute crammed to the gills whether with work, a trip to Disney World, taking my kids to Tae Kwon Do or either of my kids to one of their doctors.

The year saw the loss of our oldest dog and the addition of another left in our back yard with a hot summer day forecast.  His name was picked by our youngest after listing interesting names from books.  K laughed at “Fizban the Fabulous,” and thus Fizban came into his new name, even if most of the time he is simply called “Fiz.”

The year saw tremendous growth for all of the kids with K leading the way, now standing, running, bumping and falling her way to every drawer and counter she can reach searching for new sensations, new sounds.  Are we ever any different?  Do we ever “grow up,” or do we simply require more to stimulate us?

For O, he has gained tremendous awareness, and now (sometimes) stops to think and recognize emotions, his and others. A has learned a love of reading which will serve her well for as long as she can keep it to go along with the joy she has discovered riding horses.  Most of all, our family, as a whole, learned we can survive and thrive despite all life has thrown at us.  All in all, we’ve come a long way in a mere year.

Here’s to a year with no stops gone by.  May the next bring as much good fortune for all.

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