16 October 2008

The First Worst Wait of My Life.

MPS. What's that you ask? I didn't know either. I can't blame you if you don't. So, I will tell you, and then you can say, "At least I learned something new today." MPS stands for mucopolysacharidosis. It is a genetic disorder that has several types. Mucopolysaccharidoses (MPS) and related diseases are genetic lysosomal storage diseases (LSD) caused by the body's inability to produce specific enzymes. Normally, the body uses enzymes to break down and recycle materials in cells. In individuals with MPS and related diseases, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body. As a result, cells do not perform properly and may cause progressive damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system. While the disease may not be apparent at birth, signs and symptoms develop with age as more cells become damaged by the accumulation of cell materials.

After we received some urine test results, we were told that there may be some cause for concern. The doctors told us that based on the findings from the urine sample, MPS was a possibility. In order to rule it out, Betsy had to get a x-ray of her entire body. Apparently, individuals with MPS have skeletal abnormalities. If her x-ray had any discrepancies, they were certain this is what our sweet girl had.

First, we encountered the wait for the x-ray. If memory serves my correctly, it was about a week. And what does any sensible idiot do in that week? She googles anything she can on MPS. That sounds smart, right? And what does any sensible idiot dwell on after googling MPS? The same words she read over and over on nearly every web site she found; "life expectancy is late teens to early twenties". Now, I don't know of anyone that would read something like that and not think the worst. There is no amount of, "don't worries" or "it will be alrights" that can erase the thoughts I had the ensuing days. Who thinks, when they begin there family, that these things actually happen outside of fiction and here say? Maybe the Eternal Pessimist, but even she seemed to be thrown a curve ball on this one. My mom, at a loss, who knew?

The x-ray day came. It was a nightmare. My little baby, she was about 10-months-old, lying there, crying on a cold table. The whole thing took about a half-hour. When they said a x-ray of her entire body, they weren't kidding. For it being the least invasive procedure she had had, it was certainly the most painful for me. As we packaged her back into her seat and got into the car to head home, all I could think about was a world without her. When I first learned of Betsy's developmental delay, I thought about how she may never walk, drive, have a job, get married, have children. But this, this was too much. Now the thoughts were of no Betsy at all. Who cares if she never drove a car, or worked in a cubicle, or gave birth? I certainly didn't. To have her (period) was the best gift God could give me.

Next, came the wait for the results. This took a few, long, endless, butt-dragging days. The call came, and the news was phenomenal! It was absolutely negative!

With perspective, I think, if this is the worst...God has blessed me with an excessively great life. In writing this, I also realized that I have to keep reminding myself that a fulfilled life does not always mean getting a license, landing a great job, making gobs of money, wearing a white dress and veil, or even creating new life. It is from within and above. Betsy may never know God the way I do (in a cognitive/intellectual sense), but I know that He loves her. I also know that she must feel His love in a way that you and I may never know in our earthly life. He has made her special. His gift to her is LOVE. Love that knows not of judgement, or race, or bias. It is pure, unconditioned, and full. In essence, she is the most fulfilled individual I know, and she is only 4!

Anyway, while everyone else's children, some of mine included, are graduating college, job hunting, planning weddings, and getting mortgages, my Betsy will be tromping around Italy with her Grandpa (he promised). The wind will be blowing through her hair, the sun shining on her face, she will be laughing, and, no doubt, getting free gelato for that infectious smile. What could be better than that?

And that, my friends, was the WORST wait of my entire life.

that is NOT Jake and I kissing in the corner, although, it would be nice if it were


  1. Do you ever wonder if Betsy knows God better than we do? Sometimes I think children, especially those with special needs, are more in tune with who God is and who we are to him.

  2. I think she has a higher spiritual consciousness. So high, in fact, that I think few achieve it in their lifetime. Almost a...certain divinity.

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  4. I recently had my son evaluated for MPS, specifically type 2 (Hunter's syndrome). The doctors seem certain that he doesn't have it, but that little kernel of doubt lives in me. I understand the horror of "the wait." I'm glad this turned out well for you.


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