March 16, 2014: Happy St. Patrick’s Day!

Top of the morning to y’all! Or top of the evenin’! Or top of whatever time of day you’re reading this! Faith and begorrah! Luck of the Irish! And I’m out of Irish sayings now, so just happy St. Patrick’s Day, okay?

I’m typing this to you from Chris’s computer because mine is limping its way to a slow death just as I’m entering my super busy season, so we decided to put it out of its misery and get a new Mac. So at the moment, I am without a computer while the fine folks at the Apple Store transfer all of my files over to my nice, new Mac.

For you fellow Mac geeks, it’s just a bottom-of-the-line iMac. But still, it’s new and shiny and hopefully works better than mine, so it’s still exciting! Truly, my Mac (the dying one) is by far the best, most reliable computer I’ve ever had. I had it for five years before it even so much as hiccuped, and I’ve NEVER had that good of luck with a PC. But all good things must come to an end, and it is ailing, so I will bid it farewell and move on to its successor when it’s ready to pick up in a couple of days.

My Mac isn’t the only sick thing this week, but guess what? For once, it wasn’t me! Well, sort of, but I went to the doctor early in the week, and now I’m doing much better. I couldn’t get that awful ear/tonsil pain to go away, so I finally went in, and the doctor said she thinks it’s basically an allergic response that my body mounted after being sick so many times in a row. She said my tonsils look good at the moment, but she can tell I’ve had several infections recently, and she figures my adenoids (which she couldn’t see well enough to know for sure) were probably swollen due to an allergic response to being sick so much. She gave me a steroid nasal spray and told me if I’m not better in two weeks, she’ll send me to an ENT for a further check. But it’s been five days and I’m already feeling MUCH better, so I’m optimistic that she was right!

Chris, Sam, and Theo, however, were all sick this week. Luckily, for Sam and Theo it was pretty minor—just a garden-variety cold. Chris’s too, really, though it hung on for a few days for him. But it’s not so bad that he’s had to take any time off work, so it’s all good. And I’m hoping this is the LAST time this season that we’re all sick! Spring is coming, and I’m hoping good health will come along with it.

Speaking of health, I know I’ve mentioned my concerns about Sam’s thyroid on here. To make a long story short, I came across some information this week that made me again question whether Kaiser’s plan NOT to treat Sam’s subclinical hypothyroidism is the right plan. So after discussing it with Chris, we both felt that we need a second opinion. There is a naturopath in Oregon who runs a Down syndrome clinic and specializes in, among other things, thyroid issues. I know a couple of people who take their kids with DS to her, and they’re quite happy with the treatment, so I made a phone appointment with her for Wednesday. (Because Down syndrome clinics are few and far between, it’s possible to do phone or Skype appointments. The practitioner simply orders any necessary lab tests at a lab near you, and medicines can be shipped to you.)

I’ll spare you the long story about why we came to this decision, but the short answer is that Sam has some persistent symptoms that suggest he might benefit from having his hypothyroid treated. And the standard medical community is split on the issue—MANY doctors treat for numbers as high as Sam’s, but some don’t. Kaiser doesn’t. That might be the right answer, but it might not. So…a second opinion. We’ll see what she says.

In other health news, I completed my second week of my Couch-to-5K and started on my third week. I’m feeling pretty darn good so far! My pesky, minor heart abnormality (mitral valve prolapse) hasn’t been bugging me as it had when I tried to run in the past, and other than very sore knees (dang, I’m getting old!), I feel pretty healthy and strong. And as an added bonus, I’ve already lost two pounds—probably due to the Cto5K and my beloved Fitbit, which keeps me honest! Chris has lost two pounds, too. We’re going to be swimsuit models by summer. 😉

And in still more medical news (this is getting tedious, but I swear—this is a new topic!), I visited John Muir hospital in Walnut Creek this week. It’s a major regional trauma center and standard hospital as well. Now, why am I telling you this? Why, because it was my first stop for delivering the updated new parent and medical provider materials for the Down Syndrome Connection! You may remember some time back that I told you I joined a medical outreach group at DSC. Well, I was assigned six or seven hospitals to deliver these new materials to, and John Muir is my first one. And what a GREAT response I got! The head of Social Services was delighted with the new materials, and she sat and talked with me for half an hour and tried to introduce me to the head of the NICU, a neonatologist currently working with a family who just had a baby with DS, and the head nurse. (Unfortunately, all three were with patients at the time, but I do think, based on her enthusiasm, that she’ll follow up with them.) She said they had a pamphlet about DS, but it was so “depressing and outdated” that she refused to even give it to new parents. She was thrilled to have something new, updated, and positive to give to new parents of kids with DS! She remarked, too, about how much she liked the cover photo on the materials, and I was rather proud to say, “Why, that happens to be MY little boy!” 🙂

It was such a positive response that I’m now all gung-ho about visiting the rest of the hospitals on my list. And I have to admit, it was really hard for me to push myself to make the first step, since approaching hospital department bigwigs is waaaaay out of my comfort zone. But it’s an important project to me, and I’m very glad I did it! Most of the hospitals on my list are in the South Bay, so I had to arrange to have Chris take a vacation day to watch the boys while I drive down and deliver the materials. So I’m trying to do them all in one day (in about a week and a half). But so far only one has gotten back to me about when I can drop by. So, I’m going to spend this week haranguing the other three to try to get them scheduled on the same day. Aside from having to line up Chris to watch the boys for a day, the South Bay also uses up quite a bit of gas getting there, and I don’t really feel like blowing $50 on a tank of gas more than one day, you know? Ouch.

In other advocacy news, I’m pleased to report that Chris and I were both part of a wonderful project: a book of diagnosis stories for new parents whose babies have been diagnosed with DS (either prenatally, at birth, or otherwise). Almost 100 people contributed stories to the book, and one of my fellow Rockin’ Moms put it together. The major special-needs publisher (Woodbine House) really liked the manuscript and was interested in it, but they ultimately decided it was too long. They only publish short books now, due to printing costs being prohibitive. So, we decided to publish it online, on a website that my fellow Rockin’ Mom created. If you want to take a look, go to Chris’s and my stories, in case you’re interested, are in the His & Hers – Couples section.

You might, by the way, be thinking, “Well, there’s already a book of stories about families with children with DS! Gifts (published by the aforementioned Woodbine House) is a great book!” And indeed it is. But Gifts (a) is relentlessly upbeat, and (b) covers more about life with a loved with DS, rather than specifically how the parents felt at the time of diagnosis. And there’s definitely a place for Gifts—there’s a place for positive stories, and I really enjoyed the book. But what we wanted to do was compile stories specifically about diagnosis and how the mothers and fathers felt at the moment of diagnosis…and how they coped, and how they feel now. And we wanted it to be real, which means including the good, the bad, and the ugly. Because some of us took the diagnosis in stride pretty quickly, and others really struggled for a long time. And both responses are natural and human and reasonable—it’s just different people reacting in different ways. We wanted parents who’ve received a diagnosis to be able to read these stories and think, “Hey, I’m not awful for thinking XYZ. I’m human. And here are some other parents who felt that way too, and it worked out okay. They’re fine. Their kids are fine. They’re happy and found beauty regardless of how they felt right at the moment of diagnosis.”

Because man, is that ever an emotional time! I think I took the diagnosis in stride as well as most people might—I was confused but accepted it, and I went through the next two weeks largely happy and in love with my son, but also randomly breaking into tears for no apparent reason. Did I sit there moaning about how awful things were? Not at all. But did I have moments where I just sat right down and cried? Of course. Everybody reacts differently, and that’s how I reacted. After that first two weeks, the tears stopped for the most part. For some parents, that takes longer. For some, less. But the important part of our book is just letting new parents know that it’s okay to feel…whatever. Shock, grief, happiness, sadness, pain, anger, love…it’s all in there, and it’s all okay. Hopefully, some people will find comfort in what we’ve created. I know I’m proud to have been a part of it!

By the way, as long as we’re talking about DS, I urge you to take two minutes and watch this video. It’s lovely…really lovely. Brought me to tears. 🙂 And read this article, too. It, too, is lovely. So much of it rings true for me.

World Down Syndrome Day is coming up on Friday, which is why all of these DS links are floating around Facebook and the Internet right now. I don’t share or forward them all, but I thought these two were particularly touching. And frankly, I needed that in a week where I also read stories about (a) a mother killing her 17-month-old with DS supposedly out of “mercy” (because evidently injecting him with hand sanitizer is a mercy killing), and (b) two teenage girls bullied a developmentally delayed teenager to the point that they nearly killed him (they tortured him and talked him into stepping out onto thin ice, then refused to pull him out of the freezing water when he fell in multiple times). The horrible stories are out there far too often, and they feel like a punch in the gut. But the beautiful stories are out there too, thank god.

Anyway! Enough about the sad topics and about DS. We had a really fun weekend! On Saturday, we drove to the top of Mt. Diablo. We live at the base of Mt. Diablo, and I see that lovely mountain from Theo’s bedroom window every day. And we’ve lived here 2 ½ years, during which time I’ve wanted to go to the top, but we never have. So, right now with everything green and wildflowers blooming, it seemed like a good time to finally do it. And it was truly beautiful up there! We saw the beacon on top that guided aircrafts during WWII (it’s now lit only on Pearl Harbor Day), and we stood at the highest point in the Bay Area (roughly 3,800 feet). Some WWII planes flew by as we were on the top, which was very cool! And the weather was cool and sunny and amazing! I took pictures on my dSLR, but Chris’s computer doesn’t have my image-processing software on it, so you’ll have to wait until next week to see them. (Just iPhone pictures for this week, I’m afraid—since I don’t need any software to post those for you.)

Chris had a fantasy baseball draft Saturday night, so he was at a fancy dinner in San Francisco while I wrangled both boys to the Apple Store to buy my new computer. (Thankfully, Theo was an angel. Sam…not so much. Ha ha, that was a bit of a role reversal!) I tried to watch a movie after the boys were in bed, but I fell asleep an hour in. Surprised?!

On Sunday, we headed to Santa Cruz for Liam’s birthday party, which was a lot of fun—just a lot of kids riding bikes out in the street at their house. Sam got a new trike out of the deal, since Bill and Sarah’s youngest son has now outgrown it. Woohoo! He was very excited and kept signing “bike.”

So that was our weekend! Hope you all are well and enjoying March!

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