Can you see our most treasured Christmas gift under the tree??

Today was Wesley’s first Christmas, but I have to say he didn’t seem to care all that much. We opened our gifts to each other while he napped. When he woke up we fed him and made ourselves a nice steak lunch, during which he fell asleep again. When he woke up this time we managed to help him open the gifts he received from relatives before he dozed off again. He wasn’t terribly interested in the actual opening of presents, but he really likes the books his aunt Tara gave him, and his mom really likes the clothes his Grandma Holt gave him.

Really, this is pretty much all Wes did today:

After dinner tonight we took some gifts around to our neighbors. Because it’s so cold outside we bundled up Wes in a blue fleece snowsuit that makes him resemble a blue polar bear. He–surprise, surprise–fell asleep in my arms as we made our rounds, so when we came home I just dumped him (gently) into his crib. And there he’s been ever since. I keep checking on him, just to see how cute he looks in his polar bear suit. He usually has his arms thrust in front of him in some unnatural-looking way, which is funny to me. How can that be comfortable? His physical therapist says it’s good that he’s willing to lift his hands up against gravity like he does, because a lot of Downs babies don’t bother. But this kid sleeps with his arms straight up in the air. His muscle tone can’t be all that bad.

Wesley loves baths. Or, at least, he doesn’t scream through them. It’s still a little hard to gather much emotion from him aside from “I’m hungry” or “I’m tired.” He’s starting to smile occasionally, but not every day and only when we give him the right stimulus. Tonight, amazingly, I happened to give him just the right tickle at just the right time as I snapped this photo:

On Sunday I had my first experience with someone saying unkind things about Down syndrome and my son. It was the type of thing where I know that the kid (he’s twelve) who said what he said did so out of ignorance and cockiness. He might have even been trying to impress the girl next to her, which shows how immature he is. Even so, it really hurt. It hurt worse than I thought it would. I realized I’m not ready for anyone to imply that my son is less than anyone else, that he’s weird, that he’s alien-like, that he’s different. I can’t handle it yet.

It happened during the Sunday School class that I teach (it’s a tough crowd, that class), and afterward I pulled the kid aside, alone, and told him that he needs to be more respectful and what he said is completely inappropriate. Nonetheless, I couldn’t hold back my tears afterwards.

I guess eventually I’ll have it together enough that other people’s comments won’t phase me. But I’m still adjusting to Wesley’s Down syndrome myself. Most adults are understanding; kids are another story. It’s probably no coincidence that a month before Wes was born John gave me a priesthood blessing in which I specifically remember being told that I needed to have patience, both with my kids and with the people who interact with my kids. It didn’t mean much to me at the time, but now I can really see the wisdom and reality in those words.

On a brighter note, here’s a picture of Wes asleep in my arms.

We finally got our tree up today. We had to, since presents from family have begun to arrive in the mail and we had no place for them.

As it’s Wesley’s first Christmas we tried to point out the tree to him, explaining in very excited voices that it’s our Christmas tree and all our presents go under it, but he didn’t seem too interested in either the tree or presents. Give him a couple of years and I’m sure that will change.

Yesterday I noticed scratch marks on Wesley’s face, so in the afternoon I pulled out the baby nail clippers. I clipped his nails even when he was a teeny three-pounder and his fingers were even smaller than they are now. So I didn’t hesitate at all to clip away–until I clipped a little too closely on his pinkie finger and blood started pouring out.

OK, OK, it wasn’t exactly pouring out. But it was definitely bleeding.

So then I had to quickly grab something to dab up the blood and figure out how to stop the bleeding before he got any more of it on his clothes. I decided a Band-Aid would be best.

But have you have tried to wrap a Band-Aid around the littlest finger of an eight-pound baby who’s waving his arms and balling his hands into fists? It was no easy task, I can tell you. And if you think that babies are delicate little creatures, you’ve obviously never tried to pry open one of their closed fists. It’s like they’re rusted shut.

I finally got the Band-Aid on…and then it promptly fell off, because there was too much wet blood. I tried again with a new one, and that time it seemed to stick.

Then I put Wes on his belly for tummy time…and the Band-Aid came off again. So I put on another new one.

The next thing I knew that one came off, too, so then I resorted to double-bandaging–putting on one Band-Aid and then quickly wrapping a second one around it before the first could fall off. That worked until naptime. But after he woke up both his Band-Aids had mysteriously disappeared.

His finger is looking better today, by the way. Hopefully I’ll learn how to wield the clippers more safely from now on.

Some people have asked us what it was like to find out after our baby was born that he has Down syndrome. Here’s my experience.

A few months before Wes was born I visited a friend in the hospital after she had a baby. I remember walking into her room and feeling the excitement and happiness in the air. It was so strong, it was nearly tangible. The grandparents were also visiting, and I could see how happy and proud they were. I sensed what a wonderful thing a new baby is and how much joy they infuse into the family. It made me instantly excited for the birth of my own baby. I wanted that joy for me and my family, too.

Wes was born very early in the morning, and both John and I felt exhausted afterward. Exhausted, but happy. We had a baby, a new little son. Once the doctor and nurses were done helping me recover from the delivery, John suggested we call my sister. It was about four a.m., but we were so excited, we had to tell someone, and we knew my sister would want to know. We woke up her and her husband, but she was glad we called and she (bless her) got up and came right to the hospital to visit! I also called my family in Iowa, knowing they’d be up that early for seminary. I talked with my dad and shared the good news with him. It was fun to surprise him with a new grandchild.

I think my sister arrived after five a.m. I was knackered, and so was John, but I was glad she came. In retrospect, I’m particularly grateful for her visit because she came before the doctor did, before the purity of our excitement and relief and happiness became clouded. Right then was the exciting, joyful time I imagined we’d have after having a baby.

The doctor came in just after my breakfast tray did, around seven a.m., and said that our baby probably had Down syndrome. It was like the air was sucked out of the room and suddenly everything was different.

I was so tired, and it was such an unexpected announcement, that I didn’t have much reflex to react right then. I was also hooked up to an IV of magnesium sulfate, which is a smooth muscle relaxer (to prevent seizures because of my labor-induced high blood pressure). All in all, I was pretty out of it, and the information couldn’t soak in completely, not yet. I looked over at John, sitting on the couch. He was tired, I knew, but I could tell he felt the full brunt of the news, more than I could just then.

The rest of the day was a day of mixed emotions. We were happy to have a baby, but our joy deflated with the words “Down syndrome.” It wasn’t what we expected. We didn’t expect to have a baby with significant physical and mental disabilities, and we didn’t expect the birth of our baby to make us feel so sad and disappointed.

Now I know those feelings were mourning–grieving the loss of what we had expected.

I didn’t mourn at all that first day. For me, my hardest physical hurdle that day was dealing with that stupid magnesium sulfate and excessive post-delivery bleeding. The magnesium clouded my head and made my words slur together. I had to lie flat in my bed, because sitting up made me want to pass out. To top it all off, since I couldn’t get out of bed I had to have a catheter (and since I had a drug-free delivery, I felt every inch of that hose). Not fun. But the physical discomforts were actually secondary to the hardest emotional hurdle for me that day, which was looking at my husband across the room and seeing pain on his face but not being able to do a thing about it.

I remember lying in bed that morning, feeling physically weak and exhausted and wondering how I was going to make it through the day. The doctor wanted me to stay on the magnesium for 24 hours, which would take me until about two the next morning. I really didn’t think my sanity would last that long. I was also bleeding more than I should have been. This turned into a blessing because it convinced the doctor to take me off the magnesium after 12 hours instead of 24. He figured the smooth muscle relaxer was counteracting the oxytocin meant to help the uterus contract and slow the bleeding.

What. A. Difference. A couple of hours after the IV was removed my head started to clear and I could sit up in bed. I was able to walk with assistance to the bathroom, so the catheter was removed. Once I began to feel more like myself I cheered up tremendously.

The best bit of Wednesday afternoon came after I was feeling better. That’s when the nurses wheeled Wesley into my room in his little tray and let me hold him and try breastfeeding. It was the only time during his twelve-day stay that I was allowed to have him in my room with me, because he was usually hooked up to multiple monitors in the nursery. The news of having a baby with Down syndrome hadn’t sunk in yet; I was just enjoying having a baby.

John and I didn’t talk with each other about Wesley’s condition until late that night, just before we went to sleep. He stood beside my bed and we exchanged a few words about it. And we cried.

I’m not sure why it took so long for reality to hit me, but it did. It wasn’t until a couple of days later, in the middle of the night, that I started to think about what it meant to have a child living with Down syndrome. I thought about what it would be like for him to grow up looking different than other kids, talking different, thinking different. He would always be marked as different. Would he ever go to college? Would he ever serve a mission? Would he ever play an instrument? Would he ever fall in love?

In the newness of motherhood, it also started to hit me that I would have to raise a child with a disability. What would that mean for me? I’d never been a mom before. How could I manage to care for a dependent child, let alone a child with such special needs?

I was sad for him. I was sad that he might never marry and have the same joy I have being married. I was sad that he might never have children of his own. I was sad that he would probably struggle more than other kids to learn simple things. And I was sad for myself that I would have to learn to deal with all these differences right along with him.

My mourning–experiencing the raw emotion of disappointment and sadness–lasted off and on for a few days. It was something I had to go through to put it behind me. But even in my grief I recognized that it wasn’t my son that disappointed me. He was wonderful. It was only my expectations that were disappointed, because what I had expected didn’t happen exactly as I had planned.

And admist the mourning was much joy. Every day Wesley improved in eating, in weight gain, in little things that added up to a whole lot. We rejoiced each time he made enough progress to have some monitor or another removed. It was a great day when his feeding tube was removed, and a greater day five weeks later when we sent the oxygen tanks back to IHC because Wes could maintain his oxygen saturation levels fine on his own.

Like I said, the day Wes was born, and the days after, were days of mixed emotion. It wasn’t the pure joy I had anticipated, but there was a lot of joy.