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Family, family life, family time, Fizban, foster care, kids' growth, limits, live today, why foster kids

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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Family, family impact of MS or other trauma, family life, family time, fatigue, happy life, raising kids, Uncategorized, worries

The Universally Ordinary Existence

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As my wife and I bought a house, or rather a spot of earth and a promise to build our house, I could not help thinking how ordinary our life is.  We have children who have gone through so much, but still much of their childhood is the same as every other kids.  We may not do everything on the same time line as other families, but I believe we have as much joy and love.  In the end, when I think about what my wife and I do for our children, I think maybe that is what it’s all about, giving them a chance for a life of chances to learn, feel and fail like everyone else.

With all the trials of healthcare our family deals, most of living is still dealing with the mundane.  Taxes are done, the house is chosen, and we can continue the everyday task of learning a little more than we knew yesterday.  The chess peaces are in place, and now we can continue to learn the beautiful game of chess as I try to teach my kids the way my grandpa taught me.  It is just like life.  We start by learning how the little things work, learning the strength of the pawns.  There is plenty of time to learn the importance of moving the less ordinary peaces so they can take advantage of opportunity and protect all the smaller parts of our lives.

Backyard Swings 2014
Backyard Swings 2014

Our kids have the same fears of moving so many other kids have.  It will mean a new school and some new neighbors.  It will mean leaving the backyard they love with a swing set they have played on for hours at a time.  Fears and anxieties of moving abound, and unfortunately they will remain until after our move, hopefully in September.  I hope that they will realize many of their pawns are the same pawns, and the new ones move just like the old.

K seems to have taken the whole moving idea to heart. She is even into rearranging doctor's offices while she waits.
K seems to have taken the whole moving idea to heart. She is even into rearranging doctor’s offices while she waits.

Some days and weeks are just ordinary from the anxiety of doing the taxes to the frustrations of trying to get children to sleep through the night.  I am told there are children who sleep, and it is the midnight wakeful moments that are the exceptions for them.  Still, as we struggle through deprived weeks, I tell myself each bleary-eyed morning, “There are millions of families who wish they got your sleep or could stop their morning for a second coffee to keep them alert.  This tired feeling is normal, even down right ‘ordinary.’“  So what if coffee and soda are more than mere pawns in my defense? 

Some times, I have to remind myself, the strongest part of the family life is not built upon dealing with the extraordinary.  Life is made up of the everyday doings from walking the dogs to reading with our kids.  Every now and then, somebody asks me, “Isn’t it hard to take care of medically fragile children?”  When they do, I tell the truth.  The hardest parts of raising our kids have nothing to do with their medical issues.  The hardest parts are the same for every parent to whom I have talked.   Much like in chess a good defense is made mostly from the pawns, the good family life seems to be made with the every day deeds, overcoming the every day, ordinary challenges…like learning how to change a diaper.

Every kid needs to feel like those whom they are close to go through the same things they do. What is more ordinary than a kid trying to take care of their friends for whom they are responsible?
Every kid needs to feel like those whom they are close to go through the same things they do. What is more ordinary than a kid trying to take care of their friends for whom they are responsible?
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