May 2010

Posted by: jane  :  Category: Calendar of Questions

We found out about our baby’s diagnosis in July before he was born in December.  I wish I knew then what I know now about what to look for on a sonogram.  I would have been spared the wondering for two weeks until the results of the amniocentesis came back and I received the results by phone.  I was glad to have the chance to know ahead of the delivery, but my mother was surprised that I preferred it that way.  Every parent and situation is different.

When and how were you told about your loved one’s diagnosis?

April 2010

Posted by: jane  :  Category: Calendar of Questions

With a single-mindedness and a discriminating palate, Down syndrome kids seem to enjoy a very small circle of desired foods.  Early on my son ate nothing but fruit and grain bars.  “Not very interesting to me, but at least as good as a vitamin,” I would tell myself to try to defuse my guilt over the lack of variety in his diet.  At one time he ate pancakes, toast, or eggs, but we’re virtually down to hot dogs or chicken nuggets now (with, of course, any cake or cookies he can find).

 What are the foods that your loved one simply cannot do without, and from which he/she will not deviate?

March 2010

Posted by: jane  :  Category: Calendar of Questions

Let’s look on the light side . . .

What is the funniest thing you can think of that you somehow ended up in the middle of with your Down syndrome loved one?

For example – -  We, my 3 children and a couple of their friends, were just finishing checking out at Target one day when my son (age 3) threw up — all over everything:  the cart, the floor, and some even went into my mouth!  I wish you could see what we saw in the look on the face of that checker!!  We were mortified, reminded the checker to have the cart cleaned, and slunk our way out of the store.  Once safely in the car and sensing the children’s abject humiliation, I said the only thing I could think of: “Well, we can either laugh or cry.”  And we just all busted up laughing.  We laughed all the way home till we were nearly sick and laughter tears just streamed down everyone’s faces. 

Indelible is the look on that man’s face . . .

I know if we talked about it today we would all still laugh till we hurt! 

February 2010

Posted by: jane  :  Category: Calendar of Questions

Former university president, Jeffrey R. Holland, shared this thought-provoking story in 1999:

Thirty years ago last month, a little family set out to cross the United States to attend graduate school–no money, an old car, every earthly possession they owned packed into less than half the space of the smallest U-Haul trailer available. Bidding their apprehensive parents farewell, they drove exactly 34 miles up the highway, at which point their beleaguered car erupted.

Pulling off the freeway. . . the young father surveyed the steam . . . then left his trusting wife and two innocent children–the youngest just three months old–to wait in the car while he walked the three miles or so [to where] water was secured . . . and a very kind citizen offered a drive back to the stranded family. The car was attended to and slowly–very slowly–driven back . . . for inspection . . .

After more than two hours of checking and rechecking, no immediate problem could be detected, so once again the journey was begun. In exactly the same amount of elapsed time at exactly the same location on that highway with exactly the same pyrotechnics from under the hood, the car exploded again. . .

Now feeling more foolish than angry, the chagrined young father once more left his trusting loved ones and started the long walk for help . . . This time the man providing the water said, “Either you or that fellow who looks just like you ought to get a new radiator for that car.” For the second time a kind neighbor offered a lift back to the same automobile and its anxious little occupants. . . 

“How far have you come?” he said. “Thirty-four miles,” I answered. “How much farther do you have to go?” “Twenty-six hundred miles,” I said. . .

Just two weeks ago this weekend, I drove by that exact spot . . .  That same beautiful and loyal wife, my dearest friend and greatest supporter for all these years, was curled up asleep in the seat beside me. The two children in the story, and the little brother who later joined them, have long since grown up . . .  The automobile we were driving this time was modest but very pleasant and very safe. In fact, except for me and my lovely Pat . . . nothing of that moment two weeks ago was even remotely like the distressing circumstances of three decades earlier.

Yet in my mind’s eye, for just an instant, I thought perhaps I saw on that side road an old car with a devoted young wife and two little children making the best of a bad situation there. Just ahead of them I imagined that I saw a young fellow walking . . .  with plenty of distance still ahead of him. His shoulders seemed to be slumping a little, the weight of a young father’s fear evident in his pace. In the scriptural phrase his hands did seem to “hang down.”. . . In that imaginary instant, I couldn’t help calling out to him: “Don’t give up, boy. Don’t you quit. You keep walking. You keep trying. There is help and happiness ahead–a lot of it–30 years of it now, and still counting. You keep your chin up. It will be all right in the end. Trust God and believe in good things to come.”

What were your experiences when you thought you would not have the strength to keep going – - and what could you say to yourself looking back now?