Category Archives: live today

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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From Typhoid Mary to Easter

What do you mean these aren’t subjects linked in everyone’s mind?

As I talked about my kids trying to figure out all of the short cuts in life last week, I feel it served me right to spend the next week telling my kids reaction to being told why they can’t short cut washing their hands.  In our house where we’ve just gotten over a nasty stomach bug bad enough to send our youngest to the hospital, I’m still frequently surprised how hard it is to get our kids to wash their hands for more than 2 second splashes.  So this week, I remembered the end of March had some historical relevance to Typhoid Mary.  Don’t ask me why I remembered this random trivia, but I told my kids her story on Tuesday.  Wednesday, March 27th, is when Mary was returned to prison where she spent her last 23 years. 

I told them how there was a cook who was so good, clients kept  hiring even after previous clients died.  However, despite being such a good cook, almost 100 years later, she’s not known for her cooking.  She’s known for refusing to wash her hands, and she’s known for all the illness she spread by refusing to wash her hands.  Here was a disease known to strike people on ships, and I don’t mean the cruise liners of today. (OK not some cruise liners of today, but you get the idea)  This was a time when being a mariner was not a career for those expecting to live to be an old man.  The conditions were dirty, and people died of infections all the time. 

Then there were all these rich families getting sick with some dieing, and they were getting sick of an illness known primarily to strike poor sailors.  So investigators starting backtracking all the dead’s activities, and they all had Mary in common.  She was their cook, and when confronted, she refused to believe her sanitation was the cause of the deaths.  She was warned, detained, released, changed her name, was hired as a cook again,  killed again and was arrested.  She spent the last 23 years of her life in quarantine.  80 years later, it’s not her recipes’ tastes which are remembered.  In history, she’s known for not washing her hands and despite changing her name to Mary Brown, she is known these many years later as “Typhoid Mary.”

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“Do you want to be ‘Typhoid O’ or ‘Typhoid A?'”  At least for the moment the disease “typhoid” seems to have captured their imagination enough to prompt them to take washing more seriously.  They even teased when either of them failed to wash their hands asking if they want the typhoid nicknames.  I just wish it had lasted a bit longer as we’re back to reminding them to wash their hands.  Still, we seem to be past the 2 second splash zone.

On the crazy front, as if my teaching my 6 and 7 year old about typhoid is not crazy, we had a close family member hit by a truck this week.  Watching my kids’ concern manifest is heartbreaking and warming at the same time while it wears all of us so thoroughly.  Watching the misbehavior and not reacting to them as signaling anything other than uncertainty is tough especially when we all worry.  At least come Saturday night, nurse/mommy J was back after setting up the family to a point of at least temporary self sufficiency to make it through a night and day.  It’s a reminder this Easter to live and enjoy every day.  “Live every day because who knows, you might just get hit by a truck tomorrow?” is more than a cliché.  Our family is proof.  Still, our luck held another day, and it was a fabulous Easter Sunday.

Heck, with our family dinners’ conversations ranging from Typhoid to surgeries on any given day, of course our kids had fun pretending to wear neck braces.  It’s how they deal.  They were thrilled when J brought them each back one to wear.  So they joke, write cards and make dinner with/for me.  Then over the weekend we enjoy Easter Sunday, a fitting beginning.

Side note: I had to chuckle at myself trying to fill the little plastic eggs early in the morning before O and J woke (again).  I was trying to fill 33 eggs before the kids woke again, and I knew time was short as O had been up off and on since 2 AM waking A to come down and see if the Easter Bunny had come yet.  Seriously, I take so long buttoning my shirts for work that J buttons them for me to save time, and here I was trying to open, fill and close these silly little eggs quickly enough to hide them before the kids got up.  It turns out 68 min. was in time with 5 minutes to spare.  It’s a crazy crazy life we lead….

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