Life as we know it

Three months have passed and I have learned so much about life, babies, my son and who he is becoming.  John and I are seeing a whole other side to life that we were out of touch with just one year ago. At that time, partying with neighbors, late night’s out and freedom to get up and go at a moment’s notice was our MO. But something huge was missing, and we knew it. We were at that point that we could forego our social life for something slower. Something to make us appreciate things such as walks through the park, cool spring mornings, early bedtimes and watching the sun rise.

Wes was the “something huge” we were missing.

This morning was a prime example to our new-found appreciation for the importance of life and not letting it fly by. After sleeping through the night {even after waking after his Mama changed his dirty drawers}, Wes sweetly woke us up and 6am; a whole two hours after his typical feeding time. {This was greatly appreciated.} He didn’t scream, just calmly called out to us loud enough that we could hear him through the monitor. His “baby talk” is amazing. He honestly sounds like he’s having an in-depth conversation with the ceiling, and finds his friend interesting - sometimes funny. He’s cute like that. I wake up {being that it is my morning to do the morning feedings while we’re both on break for summer vacation} and he is waiting for me with a smile. Yes, a smile. I pick him up and kiss his cheek, and he rewards me with an even bigger, gummy smile – crinkly eyes and coos included. I take him to my room so John and I can finish waking up. Some mornings he talks, and talks, and talks and we just want to sleep, but we always just look at him with a smile through utter exhaustion and crusty eyes.  This morning he was really hungry since he slept in late. As soon as we settled upon the mattress, he nuzzled my shirt and began to suck like Maggie Simpson. Yea, he didn’t like breastfeeding, so if he was doing this, I knew he was serious.

You see, Wes is not a screamer. He does not carry on or shed tears often. When he does, I know it’s serious – like when he got his 2 month shots. That poor child had the quiver lip and all. So when he gives me his signals, I answer. Little cues like this would have gone over my head, even in my first month of motherhood. At that time I was too concerned with having a set feeding schedule with him because he was underweight. With being overly stressed about my low milk supply and his disdain for the boob, I entirely missed those signals.

I rarely miss signals these days. My boy is an open book – kind of like me. If you listen, he will give you exactly what you need to know.

So we headed downstairs quietly, and I put Wes on top of comfy blankets on the floor. I let him know that I am getting him his bottle and that I will be right back. He likes hearing that. Before when I’d lay him down he would become upset that I left him, but when I started talking to him – telling him that his breakfast was on the way - he began to remain calm and entertain himself by stretching, tooting (loudly!) and looking for toys to reach for.I bring him his bottle and settle in the chair with him. He gets his bib on him, which brings utter excitement to his eyes. Sometimes he gets super excited and begins to eat his bib, which is surprisingly hard to get away from his face.

The first bottle in the morning is always difficult to get him to eat without making a mess. This is because he uses the nipple as we adults use our morning coffee. Yes, once you put the bottle to his mouth he begins to fidget and you know what’s about to happen. Some mornings he destroys his diaper immediately, but this morning it took a bit more. After a 2 ounce mess, he was finally done. It’s rather amusing to watch a newborn poop, especially my son who has paper-thin, skim milk color skin. His entire face turns 50 shades of pink and is covered in formula. Wes is a funny kid. He hates a dirty diaper, so when he’s done going, he will just sit there and stair. Sometimes he will even cry out to be changed. No matter how hungry this kid is, he will not eat if he’s got poop-filled britches. It didn’t take us too long to realize that changing his diaper first thing before his bottle was a wasteful idea. Changing Wes is another humorous activity because of how good and helpful he is. Yes, I said helpful. The kid hold up his clothes and lifts up his legs while I wipe him; I barely need to help him sometimes. It’s freaking hysterical.  Clearly he dislikes being dirty.

As soon as he was clean, he was ready to eat. For almost 9 weeks, feeding Wes was a struggle. A struggle for him to gain weight, eat without puking, coughing or wheezing. It was tough and the most dreaded activity of the day – especially when at one point when 4 ounces took an hour for him to eat because he was exhausted. Though Wes had good tone for a child with Ds, his jaw muscles are weak. Just recently he began to eat upright and take 9-11 drags from his bottle before a break. Feedings have gone down to as low as 15 minutes for 6 ounces. I credit this to our amazing speech therapist and our own determination to get Wes to where he will personally succeed. After his bottle he just rested on my chest for his morning nap. I’ve learned with his reflux that it’s best to keep him upright for at least 15 minutes so his food has some time to digest before having the opportunity to revisit.

After our rather predictable morning routines, John and I settle into whatever we need to do, but we also make time to fit in activities to do with Wes. Lately we’ve been reading to him, making small talk face to face, having him sit in his Bumbo and doing therapies to work on his neck flexibility. Wes has a tight ligament in his neck due to how we had to feed him in the beginning. This has resulted in Wes favoring his right side which caused that side of his head getting flatter. It’s difficult to get Wes to look both ways, but we’re getting on the ball. I have to admit, we weren’t good at it in the beginning, but we’re really working hard now – especially since we’re getting the stink eye from Wes’s physical therapist. Sometimes we forget that we’re parents and that starting things off right with Wes is super important. Having a typical child or a child with a disability really doesn’t change who you are as a person, so there are times when we have to remind ourselves that we have a kid who would really benefit from more interactions. I hate to admit that we’re lazy at times, but seriously, I don’t have a halo around my head {but I’m getting there. Just kidding…}.

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Events in the Down syndrome community and a story on the news this morning is what spurred me to write – to somewhat get out of my funk {though clearly my writing lacks in luster}. Recently, 22 month old Ryan died; he was the boy with the banana split party that was in the news. Then the daughter of a friend died tragically. Four year old Kylie passed away suddenly on Monday afternoon. She was playing in her brother’s room and was apparently reaching for a toy that fell behind the dresser. She died of positional asphyxiation and was found unresponsive by her father. It was hard to see it all unfold on Facebook from the urgent message that Kylie was not breathing and to pray for her, then the chilling messages that she had passed. My heart aches for Stephanie and her family. Though Stephanie is a friend of Facebook, and I only know her through the Down syndrome page we are a part of, I still see her as a friend.  I have made so many friends that I have never met, but they are a part of my life. A part of Wes’s life. They love him so much, and I love their kids just the same.

On the news this morning it was reported that Whooping Cough is becoming even more serious and several babies have died. John actually had me rewind it so he could watch it again. “We should go get our shots.” John said. “I know, I’ve been telling you that since before Wes was born.” I had my shot about 3 years ago, but John did not.  I don’t think he realized the seriousness of it until he heard that babies were dying. I’ve never seen him so moved to do something before. We’re both getting the shot today.

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We’ve changed so much in these past 3 months. I love it.