Category Archives: Family

I Got Your Crazy Right Here!

If you want crazy, I can do crazy!
If you want crazy, I can do crazy!

At camp this week, O celebrated “Crazy Hair Day.” When it comes to crazy, it’s a house specialty, and we wouldn’t have it any other way.

It was an excuse to take advantage of O’s naturally flamboyant, impulsive nature.  It some ways, it was like asking a cat to sit in the sun.  With O, his impulsive side frequently gets him into trouble,but days like today are our rewards for dealing with the negative consequences of impulsive behavior.  We all get to smile and appreciate the joyful abandon with which he can throw himself into a project.  It is one of his traits I think we need to cultivate as much as possible because it will let him do things as an adult nobody else even considers.  Free thinkers move society in ways those of us stuck in our mindsets will never anticipate and frequently only appreciate in hindsight.

As for me, my crazy was a bit different this week.  I went to a block party to say goodbye for some of our neighbors with whom we have been friends for years.  The crazy part was my inability to remember anyone’s name outside of my family.  Now I have spent minutes remembering my wife’s name, but I have never drawn so complete a blank on so many names with whom we have hung out for years.  I couldn’t even remember their kids names as they played with A, O, and K in the cul-de-sac.  I guess I am lucky I have so much practice dealing with people who know me whose name I do not know.  Years of being an R.A. in college came in handy once more.  Of course, years as the dad of A, O, and K have the same effect.  Their behaviors and stories are frequently a topic of discussion with other parents and bystanders who know us or of us.

Still, I hope this recent memory lapse is the result of stress and pain rather than another flare.  The experience was rather disconcerting, but I do not think anyone else noticed.  I have been lucky for most of the past five years in terms of MS progression.  Reluctantly, I am scheduling a titer count, a test to see the risks for continuing to use Tysabri. I have put it off long enough.  I know the test will say nothing of whether I am having a flare, but it will give me a better sense of the risks I face continuing to use Tysabri.

All in all, it is just another “crazy” week, but it is one with a lasting image to make us smile.

Here’s to the exuberance of youth!  May we all hold it for as long as we can.

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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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