Thursday, February 12, 2009

And So It Begins....

Tuesdays. I hate Tuesdays. Everything bad that has ever happened to me or someone I care about happened on a Tuesday. I will give it to you, there are some nice things about it. I stay home with Wyatt on Tuesdays and I teach yoga on Tuesdays. And let's not forget, the Mentalist is on Tuesdays. But seriously, that's about it. Case in point: my mom died on a Tuesday. A week later Wyatt was hospitalized, on a Tuesday. And this past Tuesday proved to be right up there with those terrible Tuesdays. In fact, I'm not even going to respect the day by capitalizing it and will now refer to it by the diminutive abbreviation: tues.

I received a call from Wyatt's neurologist in the early afternoon. She was calling to confirm results from Dr. Dobyns in Chicago. It seems that Wyatt's MRI's from last September indicate that he does in fact have PCH Type 2. Pontocerebellar Hypoplasia. (I'll let you look it up, but let me preface the Google with: it's rare, and not so good) It's hard to describe how I felt right at that moment, and how I feel now. But I do know that it will be an ongoing process. Ben says he feels like we are constantly taking one step forward and two steps back. We have a great day, a great hour, and feel optimistic, like we can really see our lives turning out ok. And then a day like tues. knocks you back, kicks the wind out of you and then stomps on your heart so hard you feel like you may never recover. And it didn't even end there.

Wyatt had a terrible night tues. night. He cried and fussed for close to 6 hours and we decided that a trip to the ER was probably in his best interest. Well, note to self, a trip to the ER with Wyatt will almost always be met with confused residents, stinging comments from tired nurses and general perplexity that will add hours on to an otherwise routine trip. As if a trip to the ER is ever routine. He continued to fuss and cry with a 102 fever for another 5 hours and after an enema, 4 x-rays, bloodwork, a spinal tap and 11 hours in that hellish place, they concluded it was a stomach virus and constipation and sent us home with a Rx for Miralax. I was happy that the little love slept all day and even most of the night. He is hoarse from all the crying, generally worn out and a little dehydrated, but other than that, seems to be ok.

So it just felt like we went from thinking that we might just be ok on Monday to the world crashing in on tues. Wednesday and Thursday have been better. But since we can't skip tues. for the rest of the year, I'm sure we will have more and more challenges down the road. Wyatt has been a joy over these past 6 months and I'm certain he will continue to light our lives. He is such a beautiful little soul and I love him so very much. And Ben is the most patient and doting father and little boy could ever have. This is probably why it hurts so much...

I guess I wanted to say, that I'm not writing this to get a bunch of messages of support, or even as a way to meet other families, although those are nice results too. I'm mainly writing to tell you that if you ever want to get me something, DO NOT get me days of the week underwear. I'll just toss them out in fear of accidentally wearing the tues. pair on Friday and ruining THAT day too.


  1. I love you, and Wyatt and Ben and want to snuggle you all up in a giant hug. You two are fantastic parents to a fantastic little boy and I would boycott tues's for the rest of my life if it would help.

  2. P.S. My dad died on a tues, too. What's up with that?

  3. seriously. i'm done with them.

  4. We love you guys! I'm joining Bekah and boycotting tues as well.

  5. Tues is my worst day too! I dread Tuesday. It is a day for awful appointments and everything else. We got Brayden's official MRI report on a Tuesday...ugh.
    No matter what the MRI report says or the doctor says, Wyatt is still the same boy he was the day before the news. Those reports are more for the doctors than the parents. Helpful but doesn't change who your little guy is.
    Could you email me? I lost your email address.

  6. I love you, Leah, and send all of you hugs for every day of the week, and many extra for tues.

  7. sending you hugs again on this tues