Four Years of You

Four Years of You

Dear Jenna Paige: 

HAPPY BIRTHDAY!!!  You’ve been counting down since Christmas, so I know you’re excited. And I’m excited, too, when I’m not looking at baby pictures of you and sobbing. 

Jenna, the craziest thing about this birthday is how grown up you seem to me now. You’re not a toddler anymore – you’re a little kid, and you have grown and changed in dozens of ways. 

One word to describe you is “independent.” You want to do everything yourself. If I tell you what you want to do won’t work, you will stand there, hands on hips, and say we can find a way to make it work. I constantly find you dragging the kitchen stool around the house in an effort to reach the places you “meed” to be. You would rather spend eight minutes climbing into the car while holding three toys all by yourself than let anyone help, even just a little. It drives me crazy in the moment but that attitude will serve you well when you’re inevitably running your own country one day. 

This year, you learned to use the potty. I think the real motivation for you was getting an m&m every time you were successful – you still ask me for one sometimes. You love picking out which undies you will wear every day, which is good, because most days, that’s all you wind up wearing. You have told me more than once that you can’t wear clothes because you need to be free. It is extremely hard to keep a straight face while you stand there in your Minnie Mouse boots and Tinkerbell undies and try to convince me it’s fine if you go play in the yard like that. At least you have shoes on, right? 

I loved seeing you grow and learn in your three-year-old class this year. You learned a lot about your numbers and letters, but I really love the new ideas and social skills you picked up. You learned how to be a friend and how to navigate the tricky waters of someone not wanting to be your friend (although I can’t imagine why they wouldn’t be!). You fell in love with two little chicks that came to your school and decided to become a farmer when you grow up. You have told me all about your farm – there will be chicks, unicorns, and genies. I look forward to visiting. 

Seeing you in ballet was probably one of my favorite things ever. You loved ballet – well, you loved watching yourself in a giant mirror, which turned out to be the same thing for you. You told me being a “bah-la-lay” girl was all you ever wanted in your whole entire life, and it turns out dreams do come true. I think you would wear your ballet costume to bed if I let you. 

Jenna, I just love seeing your personality shape itself as you grow. You are sassy and strong and brave. You want a pet bug to keep in your room and you love to help your Barbies dig in the mud while wearing the prettiest dress you can find. You have a wonderful way of reminding me which choices are “green” and which are “red,” and which ones Jesus would like the best. 

Speaking of, I was so proud of you when you told me what Jesus did for you and for all of us, from start to finish. You told it in your own inimitable way, and I could tell it is really starting to register for you. And I’m just so excited for you! You also learned a lot about the struggles Joshua faces this year. I think you were finally able to really understand about some of his needs, and I was so incredibly proud of you when you told him he was made just the way he was supposed to be. You have been dragged from appointment to appointment, dropped off at countless playdates and sitters’ houses, and still you are my smiling, generous girl. 

There are not enough words in the world for me to describe you the way I want to. This age has been my favorite, just like all the rest. I love the way you share your candy with me. I love the way you invite me to play princesses in your castle. I love to hear you play by yourself and listen to you make up stories for all your characters. I love the way you shout “BOOM, SHAKALAKA” when you’re excited. I love your “monster” voice, which you like to use to sing songs and greet me in the morning. I love the way you start your sentences with “Wellllllllll” every time you’re about to tell me no to something. I love the way you call people by the job you think they have – “Candy Lady,” “Art Ladies,” “Music Lady.” I love how you are such a great talker, and yet you still have some of those toddler quirks where you mix up when to use “her” and “she.” I love how you wave your little hand around like a socialite from the 60s when you are talking about something that is “soooo adorable.” I love to watch you do your own make up, even if you look like Groucho Marx after. I love how you love “beautiful fings,” like princesses and trapeze artists and literally anything with glitter. 

Jenna, I just love you so stinking much. You are my sidekick, my grocery shopping buddy, my joke-teller, my laundry folder, my dish washer, and so much more. You are fierce and determined and aren’t afraid of a challenge. You are my Jenna girl, my Neener bear, my Nae-Nae Puddentain, my Jenner-Benner. I love you now and I will love you always. 

Happy fourth birthday, baby girl.

~ Mommy

 

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It Goes By Fast

It Goes By Fast

 Let’s set the scene: I am in Kroger with my offspring, both of whom are behaving very well, but who have apparently recently started eating Pixie sticks by the pound because they are both SUPER EXCITED and firing off questions like firecrackers on America’s birthday: 

“Is that a bug?”

“How long do butterflies live?”

“Have you seen my magic wand?”

“Can we get a butterfly to live in our house?”

“Is THAT a bug?”

“DID YOU KNOW MY MAGIC WAND IS JUST A PENCIL?”

There was no bug. And I did know about the pencil, but I pretended not to because lying to little kids is totally acceptable. 

I passed another mom and her teenage daughter as I was answering these questions as fast as I could while also trying to read through a grocery list. The other mom and I made eye contact and we both smiled. 

“It goes by fast, doesn’t it?” she said, giving my kids a wave as she walked away. 

We made it through the list of insect questions and were now deep into a series of queries over which animal would eat you the fastest, a dinosaur or a lion. Our answers were inconclusive, by the way. If you see either, just accept your fate. As Joshua began listing out the reasons a dinosaur would have a hard time eating a person (the word “omnivore” was thrown out, which is 100% Daniel’s doing), I passed a store manager. He smiled at my kids, too, and offered his thoughts on our wildlife dilemma. He was #TeamLion.

As he said goodbye, he winked at us and said, “Enjoy it – it goes by fast, Mom!”

Both this man and the mom from before were kind, sweet people (based on the thirty seconds I spent with each; they didn’t seem like serial killers or anything). They were not scolding me, or judging me – they were just living a life 10 or 20 years ahead, and wanted to pass on the wisdom they had learned. They, like so many parents, knew that the time with their kids was fleeting, and while these young ages could be exhausting, all things come to an end eventually, so I should savor the moments that I could. 

I say all that to let you know that I am not mad at either of these people. I totally get where they are coming from. But when you have a kid with delays, those comments can really catch you off-guard. And, sometimes, they can hurt. 

We are in somewhat of a unique position in our family: My son is chronologically and cognitively five years old. Socially and emotionally, I would put at him at a little younger, maybe three-and-a-half or four in some areas. Physically, his skills average out to be those of a child who isn’t quite two years old. None of this is bad news; what matters most to us is that he continues to progress, which has always been the case. 

But as I came home from the store and walked inside, those comments stuck with me. They stuck with me as I pureed food for my five-year-old, who needs to be fed like a baby several times a day to maintain his weight. They stuck with me as I filled out a form for financial assistance with swim lessons through our local special needs adaptive swimming group. They stuck with me as I remembered that I needed to buy diapers on our next trip, because potty training has been a difficult skill for my son to learn. 

For some of us, it doesn’t go by fast. Have the years seemed to fly by? Do I double-check the calendar daily in disbelief that another school year is ending when I’m sure it just started? Yes and yes. The days and the months and years do go by fast. But these early days, the days of diapers and baby food and dressing and parenting a toddler – they have remained with me, and with my son, and with our family. 

I’ve said before that I feel like we’re stuck in space-toddler continuum – Joshua does AMAZING work, and he is learning a ton. But because he takes longer to learn new skills, and because his little body is not always ready to take on these challenges at the typical age, it’s like he’s moving in a different time zone, one where days are months and months are years. A place where he grows so fast in some areas and doesn’t change at all in others.

It’s hard to put into words that match the picture in my head. I guess you could imagine a clock, where “typical time” is on the minute hand and “Josh time” is on the hour hand. He moves, certainly; things change and develop and grow. But by the time he has made it from one number to the next, the rest of the world has made a full circle, and he is left to start again.

Do I wish things were different? No – Joshua is who he is on purpose, and to wish he didn’t have these struggles would be to wish him away entirely. He is a wonderful, smart, enthusiastic kid who is already everything I want him to be. But that doesn’t mean small, well-meaning comments don’t hit me in a spot that can cause a lot of pain. 

Sometimes, it doesn’t go by fast. Not for everyone. And please know that this isn’t a call to action or a plea for you to stop telling people that time passes quickly. Many people have said that to me before, and many people will say it in the future. It’s almost always meant in love and as a friendly reminder from a mom who just wants to share what her decades of parenting have taught her. I can’t ask you to stop saying it, and I wouldn’t want to.  No one can live in a bubble where they never hear difficult things.

I suppose if there is anything I want you to take from this, it is to remember that those age-old bits of wisdom aren’t always true. 

Sometimes, it doesn’t go by fast. 

josh-wedding-2

On Your Fifth Birthday

On Your Fifth Birthday

Happy fifth birthday, buddy! You are already five years old… it’s hard to believe. Which is funny, because when you’re a parent, you’ll see that some days drag so slowly you think they’ll never end, and some days pass so fast you can’t remember they happened. And, somehow, enough days passed for you to be five!

Every year with you is more and more fun, and this year has been no exception. You learned a lot of new words this year – you like to tell me you’re “SO disappointed,” how “delighted” you are, and when you feel “very frustrated.” You still haven’t mastered your R and L sounds, so it’s ridiculously adorable to hear you say big words in such a little voice. Sometimes you try to correct Jenna and teach her a new word – it rarely (maybe never) works, but I like to hear you try.

You’ve spent probably 75% of this year dressed as someone else – Captain America, a dinosaur, Spiderman, Marshall, and sometimes a costume of your own creation. You love to dress up and play pretend. And you do not break character for anything. You make those British guards look like party animals. Sometimes, when you’re a puppy, it’s really tricky, because you’ll only answer to your puppy name, which I don’t know, and which you won’t tell me because “puppies don’t talk.” Except to say that one sentence.

Superheroes have been one of your favorite things this year. Every morning you hopefully ask me if it’s raining so you can wear your Batman raincoat. When you wear it, you have me put the “hoodie” up so you can run around singing, “Nah, nah, nah, nahhhhh, BATMANNNNNNNN!” over and over again.

This year was a tough one for you, medically speaking. You did bites at the Marcus Center, which was hard, but you did it. You gained inches and pounds and ate your weight in pureed food. I was (and am) really proud of the way you handled yourself during those sessions. We had some rough moments, which I may or may not find funny in five more years, but you gave it your all. And you’re still giving it your all each time we do the bites.

We also discovered that you were dealing with some other issues – namely, the issue where your blood sugar would plummet when you were sick! That was a fun surprise. We are still unraveling parts of that mystery, but you held up like a champ through tests, blood draws, and – the worst part – no Paw Patrol movies. It wasn’t fun, but you rarely complained. You are tough stuff, my friend.

We won’t talk about the two broken legs. Back to back. In summer.

I love watching you make new friends. You’ve become part of a little group at school, all of you kids who love building blocks and playing pretend. You could be friends with anyone. You could be friends with a sheet of paper. But I love to see you form these special bonds as you grow.

You’re so big now. So. big. What you lack in weight you make up for in literally everything else. You feel big feelings, you imagine big ideas, and you have a big smile. You love being big, and I know you’re holding strong to your goal of growing higher than the ceiling so we have to get you a giant house.

You’re also silly in big ways. You love to “trick” people, either by sneaking up on them or telling them something outrageous in such a serious tone that they actually start to believe you. You love mischief, and while it is often your sister who gets caught doing the actual mischief, I have a feeling she is only following orders from a certain five-year-old mastermind. I’m on to you, dude.

The other remarkable thing about this year is that you started to notice some of the differences between you and your friends and classmates – and you didn’t care. When you asked me why your school bus is so small, I answered you as best I could, by telling you everyone is assigned a bus that fits them perfectly, and held my breath while I waited for your answer. In your typical cheerful manner, you just said, “Oh!” and then went back to being Batman for a while. You don’t care about your differences. And they’ve made you more compassionate for others who are different, too.

Speaking of the bus… your morning bus driver recently told me that you sing songs for the entire ride. Paw Patrol, Batman, Robocar Poli, Little Einsteins – you sing it all at the top of your lungs, giving everyone a brief but exciting concert five days a week. On the way home, you chatter away, telling the driver and the aide about your day, about what you saw, who you saw, who you didn’t see, things you would like to see, something you think you saw but can’t remember, etc., etc., etc. X infinity. You love to talk, and if you don’t know the other person well, it makes no difference to you.

I could go on for pages and pages. I could talk about how funny you are. I could talk about how much I love to listen to you play. I could tell you how hard it is not to laugh when you study your reflection in the mirror until your “haircut” is perfect. I could tell you that even though I thought I was going to Italy, I wound up in Holland, and it’s a better trip than I could have ever planned.

What I will tell you is that I love you. And I’m proud of you. And you are FIVE today!

Love you always,

Mommy

Marcus

Marcus

Hello, adoring fans <–Josh wrote that part. I would never be so vain.

I hope you find yourself well this fine, frickin’ freezing day. Are you well? Text me about it.

As you probably know, Joshua started the Marcus Autism Center’s feeding program this week. A few of you have asked questions about why he goes and what he does there. As always, I live to serve each and every one of you, so here is the Official Marcus Autism Center FAQ By Kristen And Not The Actual Center – OMACFAQBKANTAC for short.

Why do we go? 

Josh struggles with eating in a major way. He’s very underweight and has a hard time gaining any weight. May we all be so lucky, amirite? I kid, I kid; it’s fairly terrible. So this feeding program basically teaches kids how to eat better. Every kid’s experience is different, but the goal for every child who attends is to improve their eating skills in the way they need it most.

What do they do there? 

Josh’s main goal is weight gain, so they are working to increase both the variety and volume of table foods he will eat. Every patient has a schedule – it starts with 40 minutes for breakfast, then a 40 minute break; 40 minutes for snack/oral motor therapy, then another 40 minute break; 40 minutes for lunch, then a long two-hour break; 40 minutes for “dinner,” which is what they call it but it happens at 2:30 for us.

During the 40 minute sessions, Josh tries small bites of each of the four foods they have. They try to incorporate foods he likes alongside foods he resists, i.e., all fruits and vegetables ever. They give him a spoon with a tiny bite of whatever he is eating (it’s diced up into super tiny portions), and they let him feed himself. After he does that, he gets several seconds to chew and swallow, and then several more seconds before the next food is presented. They use a fairly rigid routine and verbal cues to prompt him to eat; in between bites, the therapists get silly with him and will sing songs or play little games at the table. He rotates through each of the types of food several times in one session, and they record how long it takes him, if he chews and swallows it all, if it makes him gag, and a whole bunch of other little squares that they fill in. They must have a huge spreadsheet budget at this place.

When he gets a break, we head to the main playroom. He likes the toys in there and he made a friend today! They also have a playground (we tried that yesterday and instantly froze to death; I’m actually writing this from heaven) and a family lounge where we can eat. He gets his own nap room, and today we spent some time in there so he could have a little rest.

What do you do the whole time, Beautiful and Amazing Kristen? 

Oh, stop. (But go on.) I can observe Josh during his sessions, so I have been watching those. I sit behind a two-way mirror so he can’t see me, but I can see and hear him. During the breaks, I just follow Joshua around until he stops to play. Much like every other day of my life.

Don’t you have a second kid? 

I do! Jenna is being a trooper and will either be with me, my mom, my very sweet neighbor, or a fire station of my choosing. She is allowed to come, but I don’t want her to have to spend all day down there too often, plus she has school twice a week, so we’ve worked out a little schedule for my little girl. The schedule has significantly fewer sparkles than the girl.

How long will this last? 

This is an eight-week program, and we are there Monday – Friday, 8:45 – 3:15. In Atlanta time, this means 7:00-4:00, but the day goes by a little faster since it’s broken up into blocks. I don’t think we run into any holidays during our time there but I’m pretty sure they have therapy basically every day but Christmas.

 

Why does it matter if he eats and/or gains weight? Plenty of kids are small for their age. 

Josh has cerebral palsy, and his muscle tone is all wacky. He needs to gain weight and strength and muscle tone to keep up with the demands his body makes for physical activities. A walk around the block is a much bigger effort for Joshua than the average bear. So he needs to get stronger, and this is the way to help him do that.

Cool? Cool. See my secretary with questions.

josh-hospital
I mustache you a question…but I’m shaving it for later. 
On Your Fourth Birthday

On Your Fourth Birthday

Dear Joshua,

Happy birthday, big boy! Four is a legit big boy age. I know you’re about 78 on the inside, but four seems pretty old, too!

This year has been huge for you, dude. You have accomplished so much. You can walk on your tippy toes now, and you are rocking the scissor crafts! Bumpy slides, climbing stairs, and riding the therapy peanut have been no match for you as you master them all!

Of course, I think we can all agree that one of the biggest skills you’ve developed is your speech. Joshua, I love you. And you are the chattiest person I know. You ask me what we’re doing, where we’re going, who we’ll see when we get there, and if I remember how much fun we had the last time we were there. I might not remember, but you do. You remember everything. You call a doorbell a “dingbell” and you have a little lisp, so when you say things like “Thanksgiving,” it sounds more like “Skanksgiving.” You’ll probably grow up thinking Thanksgiving is a holiday to celebrate giggling since I laugh every time you say it.

I love to hear the stories you make up. They usually involve Marshall from Paw Patrol and Batman or Captain America, always fighting bad guys. And they always win. You like to tell me which Bible stories you like the best, and even though you still insist Jesus will return to Earth on a rocket ship, I love to hear what you’ve learned about the Bible.

Josh, I just love to see your personality develop. You like to be silly but you do not stand for shenanigans. You like The Rules and you make sure everyone is aware of them. We all know that you’re pretty much raising Jenna at this point, and I do appreciate it. You remember every detail of every conversation we have, and you love to answer questions!

There is a possibility that you’re a tad stubborn, too. In fact, I think you get more stubborn every year. But you know, Joshua, for every moment I am frustrated with you digging your heels in, there is also a moment of admiration for you and the way you fight. You’ve been a fighter from literally the first seconds of your life. You had to be. And while we can butt heads sometimes, I would never change that about you. It’s made you who you are. It’s what kept you with us four years ago.

I know some things are more of a struggle for you. I’m sorry, because I know it isn’t fair. But you don’t let anything get you down. You don’t worry about what other people think of you. You just go out there and do your thing and if someone wants to follow, they can. And they do. Your smile is ridiculously contagious. Sometimes I know you’re up to no good and then you look over and grin at me, and I have to smile back.

Remember when you broke your arm? We didn’t even know it was broken for two weeks. Because you’re half human, half superhero. And you rocked that neon green cast.

Joshua, I want you to know how much I love you. And how much I admire you. You have accomplished more in your four years than some grown people ever will. You’ve had to work harder for every little victory, and you’ve had to struggle over the small things. Part of me is sad about that. But part of me know that it has shaped you into an incredible person who never stops trying. Your work ethic is better than mine, kid. And you have compassion for so many people in different situations. You’ve learned about different disabilities and struggles, and it’s made your heart even bigger. You love to love people.

Happy, happy, happy, happy birthday to my big little man, who always has a smile and a reminder about using our indoor voices. I hope this next year is just as great.

Love always,

Mommy