Tuesday, August 3, 2010

Life in Holland

Well, I've given you all the latest updates on Roo's tests and treatments, and I've given you an emotional rant or two, but I thought I would take some time to talk to you a little bit more about what life has been like in our house for the past six weeks since Roo's diagnosis.

Here's the long and short of it: It varies minute-by-minute. That's become my standard response when people ask how I'm doing, and it is not a blow-off answer—it is absolutely the truth.

The morning after our first visit to the geneticist, I was almost overwhelmed by how… mundane the morning was. It wasn't any different than the morning before. The sun came up, the kids got up, we ate breakfast… and it was fine. It was normal. It just wasn't good. I kept thinking, "We're OK, but when do we get to be happy again?" The whole idea of being happy ever again seemed ridiculous. How could we dare be happy knowing that Roo was going to go through life with Down syndrome?

Facing people made me almost panicky. The following week I was supposed to meet up with some college friends for a mini-kid-friendly-reunion, but how could I? People were bound to want to see and talk about Roo. The idea of having 15 one-on-one conversations about it made me sick to my stomach, and trying to make a big announcement at lunch didn't seem any better. I really wanted to be there but didn't think I could go through with it. Finally I decided to send a mass e-mail, and I'm sure some of the girls thought I was crazy to make such a big deal about it—but it was the only way I could handle the trip, and they were all very supportive and kind about it. (It ended up being a great break for me and the kids, so I'm glad I went.)

And what about running into people I knew just around town? How do you break this news in the toy aisle of Wal-Mart? And what were they supposed to say? I hated seeing that awkward look on people's faces, that look that says, "Wow, I only said, 'What's new?' to be nice. Now what?" Yes, I know I'm oversimplifying, but you know what I mean.

The idea of talking to strangers wasn't any easier. Roo was (and is) so tiny and so darn cute, people can't help but want to talk to him and fuss over them. (And who can blame them, really?) So should I tell them he has Down syndrome? To blurt it out seemed overly dramatic and like I was begging for sympathy. But to not say anything made me feel like I was ashamed of him or just pretending that everything was OK. Part of me would actually look forward to his condition being more obvious so that I wouldn't have to explain that he has Down's, while at the same time my heart shattered every time I thought about him having an obvious disability.

I also had a stomachache. For… well, I don't really know for how long. It was at least 2-3 weeks straight. Since then, it just returns from time to time when I start to worry about something specific with Roo, like the day of the echocardiogram, or the week that we were waiting for the latest karyotype results. It's less often now, but I do actually wonder if I have given myself an ulcer over this.

Shortly after Roo's diagnosis, I began to look at some things in our life and realized that God had been preparing us for this, just not in the ways I had expected. For one thing, the geneticist's office recommended we get in touch with Help Me Grow, a service the state provides to parents of children under the age of 3. I had actually already been involved with Help Me Grow (long story short, I'd heard good things about them and got connected with a service coordinator when Lamb was just a few months old, so I'd had a service coordinator for 5 years), and my service coordinator had already come out to visit since Roo had been born. We had planned to just do some basic age-appropriate activities with Roo, just like we had done with my other kids. I called her the day after the appointment to tell her that we were going to need a new plan.

A few days later, we received a very nice card in the mail from her, along with an essay called Welcome to Holland. Since then several others have also sent or e-mailed me the same essay. It truly is a fabulous explanation of life with a special needs child, and it really helped me to put words to my feelings. I highly recommend that everyone read it.

My emotions were—and continue to be—all over the place. Sometimes I am overwhelmingly sad. Sometimes I decide that it's time to pull myself up by my bootstraps and move on. And sometimes I feel completely numb. But more than anything, especially in the first week or two, I have been angry, as you may have guessed from my recent "top ten" list. Not with Roo, of course, and really not even with God—although there have been moments. It's just been a vague, indiscriminate anger. I would get angry with the doctor for diagnosing it. Angry with people who have lots of children and none with disabilities. Angry with people in the grocery store line or the car in front of me or whatever else I could think of to be angry about.

I think I'm over that initial… onslaught of anger, but I am still on quite a mental roller coaster. I think it's especially hard right now because he really doesn't seem different from any other baby. Yes, if you lay him down next to any other 4-month-old, you would definitely notice developmental differences—Roo can't sit up with support, he doesn't reach for toys as well as he should, if he's on his belly he can only hold his head up for a few seconds. But I don't lay him down next to other 4-month-olds, so I don't notice. Add to that the fact that he's still the size of a 1-month-old (more on that in a minute), and he really seems developmentally normal to most people. So much of the time, I think the reality of it just hasn't set in. And then some days it hits me just how permanent this all is—this isn't some sickness that he'll recover from, it's not a "delay" that he'll outgrow. This is it. Forever. On those days, it literally takes the breath right out of me.

The things that overwhelm me aren't the short-term issues—the delayed crawling and walking, the blocked tear ducts, the early intervention, etc. Believe it or not, I get absolutely weighed down by the idea that he will probably get made fun of in school, that he probably won't get married, that he's not likely to ever have children. I worry about what he'll do for a living, where he'll live.

The saving grace to this whole fiasco has definitely been my big kids, who absolutely dote on him and think every single thing he does is fabulous. They love going to play with Nana & Papa or their friends when Roo has appointments; they introduce themselves to the therapists who come over and ask them to play; they keep a close eye on him and make sure to report to me anything exciting that he does—you know, like, breathing. Their simple and unconditional love is beautiful. And the fact that Roo is so sweet and adorable, well, that helps too. ;-) And my husband—oh, my wonderful husband. He is amazing. He ran right through those 5 stages of grief and got to acceptance in record time. Not that he's happy about the diagnosis, but he is fabulously looking on the bright side. He told me a few days after that first appointment, "Our other kids will outgrow me. But Roo won't. He'll be my buddy." Jon is looking forward to taking Roo to work with him, doing projects together. It simultaneously warms and breaks my heart. Talk about bittersweet.
So that's… where we are, I guess. I'm sure there is more, but that's all I can think of right now. That's our life in a nut shell.

By the way, today was Roo's 4-month well-child visit. I had a hard time going to the appointment because it seems wrong to take him to a "well" anything. Yes, I know, he's not sick… I'm just still adjusting, you know? ANYWAY, it went fine—as in, no new bombs were dropped, which is all that I can ask for at this point. He is growing well, and is now up to 10 pounds, 9 ounces (and 22.8 inches long)! Grow, baby, grow! J Our pediatrician wants to keep him on the higher calorie formula until he's eating solid foods, but other than that did not have any pressing concerns.  (I don't think I mentioned this before, but the breastfeeding didn't last long once we got home from the hospital.  Pumping every 3 hours with 3 little kids just didn't happen.

So thank you for your continued prayers. We are adjusting to life in Holland, trying to enjoy the sites. See you soon.


Jan said...

"He told me a few days after that first appointment, "Our other kids will outgrow me. But Roo won't. He'll be my buddy." Jon is looking forward to taking Roo to work with him, doing projects together. It simultaneously warms and breaks my heart." I love this part :)

Heidi said...

John's comment is stunning! What an insight! You've got a great man to walk through this with!

Patti said...

Your husband reminds me so much of mine. Thank God for strong husbands:)