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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Fear Resistance

Beware!  MonSters wait behind the door to tomorrow!
Beware!
MonSters wait behind the door to tomorrow!

We all have fears, and for many of us they rule our day to day. For my son, they have ruled the night for weeks. In three weeks, there were only 2 nights when he did not tap me on the shoulder between 3:30 and 4:15 to report he had a nightmare. On those two nights, he woke A to play. He needed reassurance we all live. In the middle of the night, his worry blots out any ability to make good choices.

For A, it is a fear of not being accepted and loved which seems to concern her most. It’s a fear which seems aggravated by uncertainty in her ability to read emotions. I have lost count of the number of times I have heard, “Are you mad at me?” Yes, we get frustrated. Try as we might, I don’t think we understand or remember the built in pause her brain has when stressed. I keep trying to remember the built in pause might serve her well later. Taking the time to work through stressful situations is a good skill to cultivate, even if we don’t understand why she is still processing how to take off her shirt while the rest of the family waits for her to get dressed in her PJs. What is simple for one can be difficult for another, and the difficulty meeting the expectations of others is stressful. I feel that stress too.  The stress makes things more difficult, and suddenly fears of failure and the social reactions to such failure become a heavy burden making everything harder.

For me, I fear what my MS will do to me. Recently on patientslikeme.com there was a thread on why those of us taking Tysabri continue to do so in light of the risk to develop a brain infection (PML). Evidently, the risks increase over time on Tysabri, but I have never seen a risk greater than one in a hundred. Meanwhile, I know how I was progressing prior to Tysabri. I had terrible balance to the point of the only exercise I did was use a rowing machine (falling 6 inches is no big deal). I had terrible distracting headaches to the point of puking on the side of the road more than once. I had greatly decreased sense of touch below my belly button and some bladder issues which I now know is frequently a precursor of trouble walking in the future. At one point, I was hospitalized when I lost the ability to swallow. So while I fear PML, I fear my MS more.

I fear not being able to provide for my family. I fear not being the father and husband they deserve. So I take what risks I can to give me the best chance to stay “me” for as long as I can. For while I am taking tysabri, using the most aggressive treatment available, I fight the only way I can to retain any ability to help, to matter in some positive way.

I suppose we all fight our inner monsters. We do what seems most reasonable at the time whether it is seeking reassurance from our loved ones, freezing in thought and body, or acting aggressively to forestall the source of our fears. The hard part is maintaining the perspective from which we can discern when our actions are working against us, costing too much. For this, we (I) need the help of our trusted family to set us (me) straight.

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Our Family's Stories of Growing Up

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