My poor husband was miserably sick the day we found out we were expecting our youngest. I actually woke him up from a finally-semi-peaceful sleep and said, “Honey, I just can’t wait another minute to take this pregnancy test. I need to know.” I can’t remember now why it was so important to take it right then. I had already taken a test the week before and it had come back negative. But I was determined. And he indulged me, bless his heart.
As sick as he was (and, let’s admit it, probably more than a little frustrated with me…), he was ecstatic when the test came back positive—and so was I. From that first moment, our baby Roo (as I call him on my blog) has been a source of complete and total joy.
Our joy increased exponentially the day we actually got to meet him. He was three weeks early, but the size of a baby much earlier than that—at just 4 pounds, 2 ounces, he was the smallest baby I’d ever seen in person.
We were thrilled to be a family of five. Lamb & Monkey, my older two, doted on him from the start.
The day after Roo was born, we took a little emotional roller coaster ride that would last about a week—but feel like an eternity. First it was jaundice, which put him under the bili-lights. Let me tell you, I realize that a medical problem whose solution is being exposed to light is relatively minor… but when everything in you says that you need to hold and cuddle and snuggle your baby… and the doctor strips him down, covers his eyes, puts him in a plastic box, and tells you that you can hold him for 20 minutes every 3 hours… your heart breaks.
But it didn’t end there. Over the course of the next week, we became experts on H&H levels, thick blood, the amount of calories a 4-pound baby needs, and more. It seemed like every time the doctors came in the room, they came with grim faces. And needles. Poor Roo got blood drawn at least twice a day during our stay. And even though they almost always came back to do an arterial draw, they always started with his heels. By the end of the week, his feet looked like pincushions.
Finally, though, things started improving. His jaundice improved and we were able to take him out from under the lights. Roo started eating more on his own, instead of taking almost all of his calories through the feeding tube the doctors had put in at the beginning of the week. His H&H levels, which we later found out were alarmingly high, started to come down. And then one day it happened: The doctor said we could go home! HOME! We thought this day would never come. We could at last get back to normal—whatever that is, when you have 3 kids under the age of 5.
So home we went, and we had a blast. Adjusting to 3 kids was much easier for us than adjusting to 1 or 2 had been. My recovery was much easier, too, since Roo had been roughly half the size of my first two kids. We settled in and had lots of fun.
When Roo was two months old, we took him to the pediatrician for a well-child visit. We didn’t know it yet, but that day she said words that would echo in my head for… well… it’s been about 10 months now, and I can still hear them as if she were with me right now. She said, “I have some concerns today.”
At the time, we didn’t think much of it. To be honest, between some issues we’d had during the pregnancy and our time at Children’s Hospital after Roo was born, we were quite used to problems and concerns that eventually worked themselves out, so we didn’t see any cause for alarm. And if we were somewhat concerned, we were comforted by the fact that our pediatrician assured us, “I don’t really think there’s a problem. But I would feel better if you would see a geneticist, get a blood test done, and then we can put this all behind us.”
So to the geneticist we went. We were so unconcerned that we didn’t tell anyone but our parents—and even then, I think we told them mainly because my mother-in-law works for my husband and would notice his absence from the office, and because we needed my parents to babysit the big kids for us! And we were so unconcerned that we parked at a parking meter and threw some change in, thinking it would be a pretty short appointment. Just a quick consult, a blood draw, and we would be on our way.
Little did we know.
I will never forget how matter-of-factly the doctor said those words. No one, not during my pregnancy, not during Roo’s hospital stay, and not even in that pediatrician’s appointment when she referred us to the geneticist’s office, had ever mentioned the words “Down syndrome” to us. But that morning, he said it as calmly as if he were telling us that the sky is blue. “These can just be inherited traits,” he began, referring to the “quirks” our pediatrician had noticed, “or they can be indicators of Down syndrome, which is the case here.”
I felt like the world had just ended. It didn’t make sense to me that he could continue talking after that, but he did—not that I have any idea what else he said that morning. Somehow we sat through an hour-and-a-half appointment, went to the lab and got his blood drawn, and went home… but I don’t really know how. It’s all a blur. The next morning we woke up, and I thought, “Wow. Everything is the same. But it is completely different.”
I’m not that familiar with the five stages of grief, but I know that the first two are denial and anger, and I can tell you… I did those like a pro. I was in denial for the next several days until we got the blood test confirmation. I was certain that the doctor was wrong. I explained away all of the characteristics he had seen. But when the call came, telling us that our baby Roo does indeed have an extra 21st chromosome, there was no room left for denial.
So I got angry. And I didn’t do it halfway, let me tell you. I was angry for Roo. I was angry for myself. I was angry for my husband and our big kids, our parents. I was angry when someone said, “How are you feeling?” And I was angry when they didn’t. If the Bible tells us to have faith like a child, that’s exactly what I did—I was just like a two-year-old in the middle of a temper tantrum because I wasn’t getting my way. (And I don’t know about you, but I have never been all that inclined to give my kids their way when they throw fits. Just sayin’.)
And then one day… when Roo was about 5 months old… I had to change his clothes. I don’t remember why, but he needed an outfit change. And I was behind on laundry. And the only thing clean in his closet was an outfit that I had been sub-consciously avoiding ever since he had finally grown into 0-3 month clothes. It was a cute little shirt and pants, and on the front it said, “I want to be a fireman when I grow up.”
And when I saw it was my only clothing choice for him, I was angry. And I talked to God in my head as I changed Roo’s clothes—well, yelled is more like it, if you can yell in your head. “God, I know that it’s silly. I know that he’s too young to want to be a fireman… or anything else, for that matter. But he can’t, Lord. He’ll never be a fireman or a doctor or… so many other things!”
And then God said to me (no, not audibly), “He wasn’t created to be those things.”
That’s when I realized that he was created to be something. Roo’s diagnosis, this life in front of us, it was Plan B as far as I was concerned. But not for God. God had known this all along, and He had PLANNED for it. He has a plan for Roo, a unique purpose for him, and it is so special it requires a whole extra chromosome to do it.
I can’t say that it’s always easy or that every day is sunny & bright or that I have never gotten angry since that day. But knowing, really knowing, that God is in charge and has a plan for this, it helps. And you know what else helps? The fact that Roo is the most beautiful, loving, happy, fun baby I have had the privilege to know. He is amazing. He is wonderful. He is an absolute joy. He has enriched our family and our lives in every way possible.Roo turned 1 on March 31, and we celebrated. And he got lots of gifts. But I think almost everyone there knows that the real gift wasn’t wrapped in a package. The real gift was wearing a silly hat and covered in cake.