Ashton, KC, Holland & Rowan

This one’s for you, Grandma Nettie. The only person who has told me they miss my blogs.

There are too many things I want to write about. Holland starting Kindergarten. Rowan’s progress, both physically and personality-ly. Baby #3 making his debut in January. (Please be January, and not Christmas.) My memories of how incredibly hard it was when Rowan was born, and my fears about having another newborn. So, you know, life.

I’ll start with Rowan because I still feel like that’s what people care about most. And it’s what occupies the vast majority of my time and brainpower. I started a blog on July 9th about it being 2 years since Rowan’s strokes and what our life is like because of that day, but it fizzled out… My last blog in April was kind of a downer. I still stand by it though. Rowan still has some sort of unidentifiable differences, but he’s also changed a lot since then. (I’m starting to blame them mostly on vision.) In big news, I finally feel like he’s a toddler and not a baby.

He still crawls, yes. Often like a monkey/Quasimodo combo, with one knee up. He’s pretty fast at it though. He has also started taking steps. He took his first steps on July 13th, as I watched from a park bench. He slid down the slide on his bum, got to the bottom, stood up, and went step-step-step. It was the craziest thing. Usually, he would just scoot off, and crawl back over to the stairs. (Yes, I let Rowan crawl all over, anywhere. He has maybe one pair of pants that does not have a hole in the left knee.) Since then, he has very slowly gotten more and more comfortable with it. He still only walks occasionally, and it is far from being his main mode of mobility. In the past few days though, he’s really made a lot of progress, and can even kick a ball without falling down. It has of course brought up more of his cerebral limitations/physical differences. His stance is really wide, his knees are bent making him crouchy, his hands are clenched and his elbows are tight to his body. So he has new ankle foot orthotics to replace his old orthotics for the crouching problem. Thing is, he can’t wear them when he crawls because apparently that will just ruin his knees. So, when he wears them, I have to keep him standing the whole time. Needless to say, (as with every other piece of equipment he’s ever gotten) we aren’t wearing them as much as we should be to be of much help. Oh well.

The learning to walk isn’t what makes him seem more like a toddler though. And it really is far less exciting to me than the rest of his progress. What I’m most jazzed about is his personality! I’m sure you all thought it was weird that I said his personality was coming up short. And therapists thought it was weird that I used to want to make “personality goals” for him, but I didn’t know how else to phrase it. And it’s important to me. He’s not “typical” but he is working dang hard to make up for it. A lot of the things I said in April that he didn’t “get” he has since “gotten.” He pretends to brush his hair with a brush, for instance. He talks a lot more and actually tries to be funny. He is obsessed with organizing, and reorganizing the books on the bookshelves in his room. He will yell from his crib demands about where Ashton or I should move a book. “Puppy book behind Bus book! Put it back on the shelf! Put it back where it goes!” He’s very OCD. Just the way we like ’em.

We are learning more about his vision. Everyone always says “what’s the latest with his vision?” Or “have you figured out what he can see yet?” No! Of course not. He has not told us “Guys, look, here’s what I can see. Such and such shapes, colors, depths, distances, etc. These things are a little fuzzy, and man, I wish I could make out your faces better.” I mean, his personality and speech haven’t quite reached these levels yet. We know he has damage to the occipital lobe of his brain. We know because of this he has CVI. We know he sees much better out of his left eye. (The left side is better at everything. Brain damage, you know…) The right eye does have vision though. We know he makes great eye contact. We know he recognizes lots of familiar things. We also know that often he cannot find a ball he has thrown, and will say “Mama find it” or “Mama get it.” Maybe it’s just laziness. He’s like “you can walk, you go get it.” At Happy Hollow last month, Rowan was no more than 4 feet away from me waiting on the little Car ride before it started. In a new place, with so many complicated things to see, he couldn’t find my face at all, even though he could hear my voice. (I used Happy Hollow as a vision example in April too!) He can’t recognize a pictures of me, Ashton or Holland, but he could tell you someone was wearing a hat. (It was Holland’s T-Ball picture we showed him.) He is smart and great at compensating, and can memorize some things fairly easily. Then it gets tricky to figure out what he’s seeing and what he has just memorized. Puzzles, for instance, are really hard. He can’t make out shapes, but he can memorize a really simple puzzle when you teach him how to do it. The other day I started thinking about how strange it is that Rowan doesn’t know what a tree is. (Deep, huh?) Because unless I put him right up to the bark (which I guess I should…), he wouldn’t know what I’m pointing at and describing as the big brown and green thing. Things like that are weird. All of this said, if you didn’t know him well, or try to test any of these things, you would think his vision is fine. He compensates amazingly well. He’s just starting the process of transitioning out of his current therapy to preschool when he turns 3 years old in March. We are really hoping, praying, crossing our fingers that he gets placed in a vision impairment preschool rather than an orthopedic impairment class. Sure, he’s a gray area, and could frankly use a mix of the two, but when it comes to “accessing his education” (as they say in these meetings), vision is his biggest need. Right now, he and I go together once a week to a 2-hour little preschool class with other visually impaired kids. Many of them have much less vision than Rowan. All of them walk and use their hands like typically developing toddlers. You win some, you lose some, Row.

He still has his g-tube. He’s drinking a lot more, but he’s got a long way to go. As with most things, people are always asking me when it’s coming out. We do not have a date, or even a general time frame. He’s drinking a lot, but not enough according to the GI. As he gets bigger, so does the volume he needs to be drinking. He’s also going to have surgery sometime in the next year (or two) perhaps, and she suggested it might be safer to leave it in through that. Sure, it’s annoying that he has a foreign object in his body, but it’s not the end of the world. And it is still pretty helpful on a daily basis. Just shoot his iron right into him, or a little Miralax or some extra water. Maybe some egg nog when the Holidays are here.

In general news, he’s a 2-year-old. He is opinionated about what he wants to do, eat, read, etc. He used to say “Hug” all the time, but has since moved on to “Hug-a-mama.” It’s pretty adorable. He thinks Holland is the greatest, but does not want to snuggle or hug her. It’s his survival instincts I think. She has taken to saying “Rowan, do you want to see my belly button?” (He is obsessed with “bel but” as he calls all belly buttons.) to trick him into getting close to her. (When is that weird?) He spent her whole first day of school, yelling at me “Pick-a Up Holland!” He’s very excited to see her every day. He wakes up every morning and from every nap and immediately yells. Either for me or Ashton. Or to switch his books around. Or for Holland to get out of bed. Or whatever he feels like. He’s an early riser (like 5:20) but Holland has learned to sleep through the yelling for a few minutes at least. He has started to go to nursery. Usually with Ashton, but can be left sometimes. I think the vision thing makes it hard when there are so many things going on that he can’t figure out. It makes me feel stressed out just thinking about it. He’s learning to do more with his hands, like put pegs in holes, stack nesting cups, etc. He loves trucks, buses and balls. And has recently taken a liking to the Kids Bop version of Pitbull’s “Timber.” 

These were taken on his half birthday a few weeks ago. We had to get these New Balances to fit his AFOs. (They’re a 6 Extra Wide. (Insert big eye emoji here.))

The thing I’ve been struggling with putting into words lately is: what makes Rowan different. I like to be able to fully understand things. I like to know the ins and outs. I like to know why things are the way they are, and where they’re going, and when. I like to be able to pinpoint exact reasons. I want to pinpoint Rowan! And I can’t.

So motor-wise, his delays/differences are obvious. He can’t stand. He can’t walk. Before we flew to Hawaii (deserving of its own post) a couple weeks ago, the TSA agent at the airport asked me to have him walk through security. I said he couldn’t. He then asked me how old he was, and when I answered he said “2?!? And he can’t walk!? He’s really slow, huh?” I simply said “yes.” He also can’t use his right hand for most things. If he’s able to pick up food with his right hand, it’s nearly impossible to turn his hand and open it to put it in his mouth.

Vision-wise, the vast majority of people seem to think he sees things normally. He’s even fooling his opthamologist. At Happy Hollow today, Rowan can’t find Holland when we’re watching her on a ride. (And no, I don’t mean she’s spinning really fast really far away from us. I mean she’s sitting 3 feet in front of us, but she’s surrounded by hundreds of new things that Rowan can’t compute.) Rowan can’t always find a ball that you just rolled right in front of him. He feels around for it instead of seeing it. Rowan doesn’t look at animals we see at the zoo or farm or a friend’s pet.

Then people say to me all the time, “Well, Rowan doesn’t have any cognitive delays, right?” And… I mean, I guess that’s true. His speech therapist and pediatrician are pleased with how much he talks. He can understand lots of things. He can follow some directions.

So what is it?? What is he missing? Is it because he doesn’t see everything? Or that he can’t compute what he is seeing? Is it that it’s hard to do things with his hands, so maybe he does see something in a book, but can’t figure out how to use his hand to point to it when I ask him to? Is he missing an imaginative link in his brain?

I can tell you this much, it is NOT because he spent months in the hospital. Even now that it’s been more than a year and a half since he spent significant time in the hospital, and almost a year since he spent any time at all, people still say “Of course he’s behind. Think of how much time he spent lying in a hospital bed.” That’s not it, people. It’s his brain. This much I know: he has cerebral palsy. That is not a ruse.

Basically I lump these ambiguous delays into his personality coming up short. (I know, I know. He has a personality. He has a GREAT personality. I’m just unsure what the right word is. His imagination? His Rowan-ness?) And it bugs me more than anything else. I don’t care that he doesn’t walk. I still occasionally get bugged when he’s crawling in public and people make comments about how he needs knee pads, or they seem uncomfortable when I tell them how old he is (after they inevitably ask). But I’ve at least accepted that he still has a long, long way to go before he’s walking. People think it’s close because he’s started cruising, but let me remind you that Rowan moves slowly. Sure he can kick his legs around when we “walk” him holding his hands, but he’s no where near having the muscle strength or coordination to walk. He is not like a 10-month-old who is cruising, training his brain and his muscles to be walking soon. He army crawled for 7 months for crying out loud!

His vision therapist (pictured above in the one crappy picture I took of him the day he turned 25 months old, at his Early Start Motor Room), says that he’s “experientially delayed.” Meaning, things other kids see hundreds of times, and figure out how to do (taking care of a baby, brushing their hair, really seeing pictures in books), he isn’t experiencing. He has to learn a different way. What way that is, I don’t really know. Rowan doesn’t recognize a picture in a book as being the same thing he sees in real life. Rowan doesn’t imitate things we do very often, like brushing his hair, brushing someone else’s hair, rocking a baby doll etc. Rowan doesn’t pretend to drive his cars around. Sure, he pushes them around the floor, but it’s not the same. Trust me. Rowan memorizes things and repeats them. For example, he says “HELLO” when holding a phone. Rowan doesn’t know that you say Hello when you’re talking on the phone. (Wait, is this because I only text?) Rowan has few opinions, or things he really likes. He is a baby in so many ways. (And yet he’s not! He’s loud like a toddler! And he doesn’t want to just sit in a stroller at the park like a baby! And he wants to hit us when we don’t listen to him!)

Now often when I say things like this or when I say “I’m so tired of having a baby! I’ve had a baby for 2 years.” people don’t waste a second before jumping in with “But he’s so cute! And think of all he’s been through! He’s a miracle! He’s done so much more than my [normal] kid.” But my goodness, let me have the moment to say that this sucks. I’m not saying I don’t love Rowan. I’m not saying I’m not grateful for Rowan. I’m not saying Rowan isn’t smiley or loving or often sweet. He’s funny and cute and amazing. I’m not saying I’m not happy that he survived everything that he has. I’m not saying his life has been as easy as the majority of kids. I’m just saying, some things suck.

And those things are the ones I can’t put words to. Rowan seems “blank” sometimes? Not engaged? Not imaginative? Maybe it’s especially frustrating to me because I wonder if these things will come at all. Or will he always be… lacking in some unpinpointable way?

Well, it sounds far more negative than I mean it to be. I just can’t find the right way to describe it, and it eats away at me sometimes. I want to have the words! But I am not depressed about it. I’m just working through it through writing about it. So there you have it. He’s not normal and I love him just the same as the normal kid I’ve got. Sometimes more. (Because it’s not always better to have more opinions… Holland, take note.)

In case you’re a visual and not a wordy-words learner, please see Holland at 25 months below.

Fine motor skills up the wazoo! And imitation! And imagination! And looking right at the camera! And understanding that you smile when you look at the camera! And tan (Okay, Rowan’s fairer skin is not on my list).

Imagination! Dressing her doll like herself! Understanding the beginning of potty training! Looking at herself in the mirror! Pointing! Pointing at her eye (I think)! Standing!

(Again, this does not mean I love Holland more! But my gosh she was cute.)

Rowan’s Golden Birthday!

(Oh, you don’t know what a Golden Birthday is? It’s when you turn the age of the date of your birthday. 2 on March 2nd. Now you know.)

I plan to write a more in depth blog with actual perspective and thoughts and all that, but for today —

Rowan’s Golden Birthday in photographs:

Rowan at OT. Behold: Theratogs. (A “spectacle” as I called it last month.) Generally meant to be worn against your skin, but his is all rashy. It’s a three-piece suit. And it’s supposed to make his trunk stronger, make him sit up straighter and keep his hips supported. It’s got more pieces coming. Straps to keep his shoulders back, his arm turned, etc. etc.

And here’s our in home therapy with Angie (in the checks), whom we love. And Kris is in charge of O&M (Orientation and Mobility… I think). She helps figure out how Rowan’s vision impacts the way he moves. Like when he crawls right into the couch.

The only “present” he cared about was tissue paper, of course. Holland stopped even waiting around for him to be near a present. She just opened them right up.

Holland picked out Legos “for Rowan” for both Christmas and his birthday. He has no interest and she loves them.

Rowan has learned to stand up (while holding) on the past few months. But in the past few weeks he’s not quite so leany (Does that make you think of While You Were Sleeping? “It looks like he’s leaning.”) and he’s able to hold on with just one hand sometimes. It’s pretty fun to be able to see him standing and playing. He loves coming out the playroom now.

“Hat.”

It was dumb to think I could get a good picture with this huge #2 balloon. I did think it was pretty cool looking though. It was windy, and all he wanted to do was crawl down the steps and down the sidewalk.

“S” years old.

No wait, 2 years old. Rowan loves wearing shoes and socks. For the most part, he calls them both “socks,” but unfortunately pronounces the first S like a C. And yells it out. A lot.

Typical afternoon. Holland performing.

This was the best we got. Two years as a family of four. Don’t mind my thumb. It hurts and Rowan’s OT made me a makeshift splint…. which I then had to put packing tape on.

Rowan met namesake Rowan for the first time on his birthday.

Naked cake eater. (Actually, he did have socks on.)

Well, the very next day after my last post when I said that I still liked Rowan’s hair long, I took him to get a trim. The third of his life. And his first bad haircut. It was horrible. She missed half of his head, it was completely uneven, and she cut off all of his curls, but left him with a bob. It was just so bad. So we had it cut shorter, and then shorter again. And now 3 weeks later, he has one curl. I was pretty upset about it at first, and will besmirch the name of Snip-Its (if I knew the name of the lady who cut it, I’d be more specific) far and wide, but he’s still cute so I’ve come to terms with it (while continuing my besmirching).

This month he learned to crawl on his hands and knees! When he had his stroke(s), one of his nurses told me to give him 18 months to see what kind of damage it had done. Granted, we have a long way to go still, but this happening at exactly the 18 month point (my 31st birthday) made me feel like we’re heading in the right direction. We’ve also upgraded his undergarments to this spectacle. I feel like I put it all on incorrectly every day so who knows if it’s doing what it’s supposed to do. He’s talking a lot, and has lately changed words he once to knew to add an S on the end. For instance “more” now sounds a lot like “mas.” Too much Dora, perhaps.

And today on his 23rd monthday he drank more than he has since having his “event.” It was somewhere around 6-7 ounces. He still appears to be possibly drowning while doing it, but Mama just keeps putting that straw in his face. (Not really… don’t get scared. And on that note, at Trader Joe’s today a lady in a separate checkout line yelled to me and everyone else nearby at the busy 5pm checkout line “Is that seatbelt too tight?? He looks like he’s having trouble breathing!” Of course everyone turns to look at him. He’s not perfectly pink or anything, but he’s not gasping for air. I just said “Oh, no, he’s fine, but thanks” and everyone kept staring. I didn’t elaborate with “Oh, it’s not tight, it just looks like it because his chest has a unicorn horn pointing out over the buckle. Oh, and his lips are often blue. Move along, lady.” Next time, perhaps.)

This Bear Cup may be the death of me…

And Holland. Oh Holland. Holland is stretching (or breaking, or shattering or something) my patience to the limits, but I’m coming to realize it may be more a problem with my reaction, than hers. She is, after all, only 4 years old.  She feels everything SO big. (We may be too similar…) Happy, mad, sad, frustrated — Everything makes her want to just grab someone and squeeze the life out of them. Sometimes it’s awesome, sometimes it’s dangerous. Often the recipient is less excited about her affection. Often I tell her to be careful with Rowan, and he thinks it’s the funniest thing ever. He’s no help. So as not to also besmirch her, she is also so sweet, considerate, delightful and such a loyal friend. She shares in her friends happiness in a way that I wish I still did. Her friend in school Anna is the Special Person this week in their class. When Holland was telling me on Friday that it was Anna’s turn, she said “I’m just so happy to learn more about her. I’m so happy for her that she gets to be the Special Person.” (Usually I’d be more like “Wait, I’m special too…”)

She’s also a loving — and honest — big sister. Yesterday she gave a talk in Primary, and she wanted to talk about Rowan. (Last time she gave a talk she wanted to only talk about Princesses and Princes. So, progress.) We talked about Rowan’s heart and his body, and how he will be have a perfect body after he’s been resurrected because of Jesus Christ. Then this morning in the car, she says to Rowan “Wowan, do you know Jesus gave you a heart that’s not perfect? Did you hear me say that in Primary? I think He grabbed the wrong one on accident. Maybe He was busy talking to his Father or Mother and grabbed the wrong one. I think He gave you a scrambley one.”