Topsy-Turvy

The last ten days have been anything but normal. And, the news TMOTH and I got last week has definitely turned our world on its ear.

Our son is headed for bone marrow transplant.

When I got the news a week ago, I fell apart. My world has been rocked. How could this bubbly, hyperactive, absolutely most adorable little boy in the world need such a risky procedure?

But, at this point, he does. We've got a lot of steps to go through before the ultimate decision will be made. And, we have to find a donor--it's not certain any of his immediate family will be a match. The likelihood is 25% for his sister, and 2% for both TMOTH and me--29% chance that one of the three of us will match.

The dust is just starting to settle and I can think straight again after getting the call last Tuesday. But most of my energy is being spent trying to figure out what's next, and looking down the road to the next few stages of treatment. Still hoping that when we go in to do another biopsy prior to transplant that the numbers have changed and we can hold off. I'd rather deal with biopsies every 3, 6, or 12 months than transplant.

I don't know what this means for my blog, or even my writing in general. I know I'll need to write to deal with the stress. And it seems like I've had three major things happen in just the last few weeks: first, deciding it was time to say goodbye to "Homebody" and move on; second, a personal decision to work on something I'd been struggling with for a long time; now, this. All in a matter of just a few weeks.

I'll check in when I can, try to post as I'm inspired or led... and this blog may turn into more of a journal of our journey, at least for a while.

Thank you, loyal readers, for any prayer you happen to send my family's direction.



PS: If you should feel so led, please consider becoming a marrow donor. It's an easy, painless process to get on the registry (although there is a small fee unless it's associated with a donor drive). Please check out Marrow.org for more information. -- LS

A Few Thoughts on Parents of Special Needs Kids

Before our little boy was diagnosed with Shwachman-Diamond Syndrome, I never really gave much thought to the needs of parents with kids with special needs. And while I would be the first to say that SDS isn't the worst possible diagnosis (and some would probably argue until the world ends that SDS makes him a true "special needs" kid), it also has given me a glimpse into the lives of other parents that do have truly special needs kiddos.

My Two Munchkins in a recent picture

With our daughter, if she had a cough or a sneeze, I never really had to worry it would turn into something more. (I did, of course, but she was never seriously sick.) If she missed being in the nursery at church one week, she'd be back the next week, maybe with the tiny tendrils left of a cold, but virtually all better.

Now, if my son coughs in the middle of the night--even if it's just once or twice--I wonder if he's coming down with a cold. Or the flu. Or worse. Will he have to be admitted to the hospital--again? How long will he stay?

And, it all runs through my brain in about one-half of a millisecond.

Every special needs kid is different. Whether the kid has SDS (like ours), leukemia, Downs Syndrome, or something else more rare like a muscle atrophy condition, there's an adjoining parent or two who struggles with the idiosyncrasies of their child's disease. With us, we've had to learn to accept the medications given daily (which I think is probably the same with most parents of kids with special needs) and the fact there will always be that "What If?" question in our brains. And the specialists that will have to be involved with his long-term care. And the fact he may not be as tall as his mom when he hits adulthood. (I really hope we're at least at eye-level. I'm a tall woman--5'8"--but I can't imagine having a child shorter than me when they're an adult!)

While most people tend to focus on the kids with special needs, sometimes the parents and sibling(s) get forgotten. If you're in this boat, maybe you should take a minute and give the mom or dad a call just to see how they're doing. Offer some babysitting time. Trust me--it's scary as a parent to hand your kid over to someone when you don't know what could go wrong--then you have the added concerns of medications, and it's nearly paralyzing. Since our son was diagnosed positively, I can count on two fingers how many times my husband and I have left both our kids with someone other than a family member. It's not that I don't trust anyone, it's that I personally feel it's probably overwhelming for someone to know what they need to do, even for something as "simple" as mealtime.

And, maybe I don't want to burden anyone else with the complexities. Who knows.

Question for you: do you know anyone with special needs kids? When was the last time you loved on the parents or siblings?

Until next time,