Jonas the Great Communicator

Having a conversation with a toddler is sometimes confusing, but always entertaining.
It goes without saying that I like to talk. It stands to reason I'd bring a child into this world that talks as much as his mommy.

The most interesting thing to me is observing how he chooses to communicate, and watching his memory develop and improve. He'll say things to me that are seemingly out of the blue, but he's probably been gathering the information for days.


Earlier this week, we were walking from the car to the house. Jonas turns to me and says: "Mommy, Curious George with the butterflies". A week ago, we went to the butterfly garden at Secret Woods in Fort Lauderdale. It was only after we'd gotten back home that I realized we'd lost old George in the garden. I could picture him sitting on the bench, all alone. I explained to Jonas that Curious George stayed to play with the butterflies. Little did I know it would stick with Jonas, resulting in him talking to me about it a week later.

Last night, Jonas decided to sing everything he was speaking. On a talkative drive home, he started by singing about Luis being at work. (One of his favorite Jonas Originals, second only to Dinosaur, Dinosaur). "LU-IS at worrrr-rrrrk" he sang, before switching gears to: "Mommy ha-home, mommy go home. Cooby Doooooooo, dark outsiiiiiiide...go playground laterrrr. Go playground sooo-oooon"

I'm sharing this with you, because as I am experiencing this stage of a child's development for the first time, I am absolutely fascinated with a toddler's train of thought. It's something akin to stream of consciousness. Whatever is on Jonas's mind, he just blurts out loud.

Being a parent is like getting an education in real time. The way our minds work, why we behave and react to things in a certain way, and how we process information.
I am learning the best way to teach and communicate with Jonas, just as he is learning the best way to communicate with me.

What an awesome experience.

Easy goin', We'll Laugh Our Cares Away...

Last year, on one of my mom's random visits to South Florida to spend time with her grandson, she brought Jonas a copy of Follow That Bird. If you're a child of the 80s like me, you remember this tale of Big Bird and his cross country journey of family and acceptance. Jonas immediately fell in love with the movie, and (like any good toddler that's fond of a routine) wanted to watch it on a loop.

Fast forward several months, and we're on a car ride. I could hear him singing in the backseat, so I turned down the radio to hear if he was just chatting to the song. Much to my surprise, I hear him singing one of the songs from the movie: "Eaaasy goin'. Laugh...cares...way. Easy goin' day".

What a fitting and appropriate song to be one of the first he learns. Jonas's life may have started far from "easy goin'", but strangers and friends alike often remark on what a happy child he is.

I try my hardest to remain positive, especially when it comes to Jonas's health. He recently had a bi-annual check up with the cardiologist, and the weeks leading up to it were absolute torture for me. Jonas is not "sick" by any stretch of the imagination. But he does need one more surgery to complete the re-routing of blood flow from his heart to the rest of his body. Many kids with Hypoplastic Left Heart Syndrome have the final surgery, called the Fontan, as young as age 2. I was dreading Dr. Flores would at least want to schedule him for a catheterization, to see how his function was holding up.

I am ecstatic to report I was just being a worrisome mommy. Dr. Flores assured me that Jonas was extremely healthy, and she wanted to wait until he was 4 years old to schedule the last surgery, as long as he remained in good health. Jonas climbed up into the chair next to me in her office, and she remarked: "Look at how fast he climbs! I know heart healthy children that aren't as fast as he is!"

This visit was exactly what I needed to calm my fears. I know the final surgery is inevitable, but to hear Jonas is doing so well is reassuring. Jonas has endless amount of energy. He is a daredevil risk taking toddler, with not a care in the world...which is exactly as it should be.

I am just so afraid at times. I guess this is normal for all parents, to be (sometimes obsessively) concerned about their child's health and safety. I try not to get ahead of myself. It's important to take this one day at a time, because looking into the future is stressful and frightening.

For now, today, Jonas will laugh and play. He'll tell me stories about the cats, request his favorite albums (Weezer's Green album and Joel DaSilva and the Midnight Howl) and get a quarter of the way through the alphabet, not realizing his skips the letter "E".

I just have to remind myself to live in the moment, and enjoy each precious hug and kiss from the sweetest boy I know.

If I'm Rubber, Then You're Glue

Jonas is 2. If you aren't a parent, I'm not sure how much you remember about being 2, but I'm discovering it means you like to climb and jump on EVERYTHING. Jonas started climbing a lot well over a year ago. My solution to this was to take him to the playground as much as possible, sometimes 2-3 times per week.

Yesterday, I went to work at 5:00a.m. like usual. My game plan was to take him to the playground as soon as I got home. Unfortunately, Jonas had other plans. Around 8:00, I get a frantic phone call that he'd fallen flat on his face. Best we could tell, he'd launched himself off the changing table. We had to go to the pediatrician, who wrote him a script for an x-ray, to make sure he hadn't fractured any bones in his face.


I'm a pretty decent problem solver, so my first instinct was to take out the changing table. Problem solved, right? Not so easily, unfortunately. Boy has decided this is his "jumping" phase. Today he's been jumping on his bed instead. Of course I'm going to tell him no. Tell him he could get hurt. But at some point he'll be in his bedroom alone. I can't hover over him every second of the day and night. I also don't want to put his mattress on the floor, it looks like hell.

Meanwhile, my point of writing this blog: I received a phone call from our pediatrician last night with our x-ray results. I should preface this rant by saying I love our pediatrician. She's always wonderful with Jonas, has been from the start. She told me she couldn't see any major fractures, but could not rule out the possibility of a hairline. The tissue in his face was too swollen to tell. She then gave me some helpful instructions, like watching to make sure his behavior doesn't change, waking him periodically to make sure he isn't concussed, etc.

Then, she said this: "I'd like him to be more careful in terms of play. He's taken one too many hits lately. (He fell on Saturday while playing with his buddy Terra. Same thing, climbing) I know he wants to act like a normal kid, but he's not."

At the time, I didn't fully process what she was saying. I understood what she meant: He's a heart baby. The goal is to keep him healthy. But I sat on it last night, and thought about it more today.

YES, he's a heart patient. Of course we need to keep an eye on him. But he's not breakable. I absolutely REFUSE to treat him any differently than I would if he had a whole heart. It's bad enough that he will have limitations later in life that I will have no control over. It is imperative to his development that he not be held back in any way. He is a tough kid, no doubt about it. When he took that hit yesterday, of course he cried. He's 2. I would've cried, and I'm 30. But he got over it so quickly, he was laughing and dancing a couple of hours later like nothing had happened. Why would I rob him of that?

So for now, I'm going to let him be a kid. Jonas will fall, and I guarantee he'll pick himself right back up again. I'm not going to baby or coddle him. I hope he will thank me one day.

Heart moms: Have you been in a similar situation? How did you handle it?

Parenting Style

I don't generally use this blog as a platform to discuss how I raise Jonas, but as he becomes more of a "little person" and less of a baby, I've been thinking a lot about parenting style and discipline. What good is a blog if you can't ruminate "out loud"?

Jonas is a very assertive toddler. He's also a great communicator, especially for someone that is still learning how to properly put words together. This makes it a lot easier for me to talk things out with him when he gets frustrated. The greatest gift my mother gave me in raising me was to speak to me on a simplified version of an adult level. I speak to Jonas just as I would a friend, co-worker, or contemporary...just a little more basic.

Last night, he was refusing to take his medicine. We've never had this problem, as it is part of his routine from birth. In hindsight, I know he was just overtired, but it was extremely frustrating. After several attempts at calmly explaining why it was important, chasing him down, etc.; I finally just scooped him up in my arms and sneaked it in his mouth. I felt terrible. If I had just been patient and given him a minute to calm down, I'm sure he would've complied. Moments like this are a struggle. Of course he needs to know who's in charge. I am the parent, the one he looks to for approval and guidance. I know I need to be firm but fair. Every experience with him is a lesson in treating him with kindness and respect, without becoming a pushover myself.

Things I try to remember/enforce with Jonas:

~I'll NEVER, EVER strike him under any circumstances. He is not an animal or a piece of garbage. He is my child, a human being with feelings. Furthermore, he is a human being that is not capable of rationalizing right from wrong. He is still learning. We
all make mistakes. Being punished for hitting a speed bump on the path to doing the right thing makes no sense.

~I will try my best not to raise my voice. On days he tests my patience, I try to remind myself that he hasn't had the life experiences of an adult. He is a very easygoing child with a happy disposition. He will inevitably do something I don't like, but it is my job to correct him patiently, with a level head.

~Speaking of patience, I will allow him extra time and space to explore. If this means leaving the house 10 minutes early to let him stroll to the car, stopping to say hello to every lizard and squirrel, so be it. From his perspective, everything is new. He hasn't traveled the same path for years, he is taking in his surroundings. It's not defiance, it's the gathering of knowledge and information.

~I will not hover over his every move. As long as I am at a safe distance where he can be monitored in case of emergency, he'll be just fine. Holding his hand through every move in life now sets a precedent for hand-holding as an adult. He will ask for my help when he gets stuck. Allowing him to safely explore his independence will make him more well-rounded later in life.

~No matter what, I will always support him. No one leads a perfect life. Life is a messy thing, and we stumble at times. If I do the best job I can raising him, he will make good choices. Whether he decides to become a cello player, zoo keeper, fireman, or restaurant manager...he will have my blessing 110%. As long as he is working toward his goals and making the life for himself that he desires, that is all I can ask for.

These are just a few things. Every day Jonas teaches me as much as I teach him.
If you're a parent, I'm sure you can relate. What has being a parent taught you?

Turning 2

I started this blog as a way to chronicle Jonas's journey with Hypoplastic Left Heart Syndrome. I wanted to share his story, especially while all of the details were fresh. I wanted him to be able to read this when he's older, and understand how everything came to pass.

I am pleased to report that I don't need to post here often, because Jonas is just a regular little boy that happens to have a heart that's wired a little differently than most. He runs and plays, he laughs and cries, he talks. Oh, does he ever TALK!

In the weeks leading up to his second birthday, he has become increasingly stubborn and independent. Those terrible two's are creeping up, and I wasn't expecting such a transformation! My sweet little ray of sunshine is now showing me he is his own person: a toddler force not to be reckoned with! So I try to give him his space, and lovingly guide him the best I can without getting too frustrated.

Every moment we spend together, I'm walking the line between smothering him with affection and turning him loose into the world, where I can watch him safely from a distance.

Jonas is the strongest person I know. Stronger than even me, because he has yet to be jaded by the world. His positivity is never manufactured. He is real and true.
Jonas knows survival and persistence, and he has enough of each of those for ten kids his age.

I am thankful that Jonas's CHD is an afterthought. Bi-annual visits to the cardiologist, medicine every day, but we live an otherwise routine life.
Sometime between now and the time he starts Kindergarten, we'll be talking Fontan surgery. But why get ahead of ourselves? When you have a toddler, you take things day by day, because their moods change like the weather on a Floridian afternoon.

Happy Birthday, baby boy. Thank you for being the light of my life. You're my inspiration to work harder, be a better person, and not take even a moment of life for granted.

I LOVE YOU!

...And Now for Something Completely Normal...

No one warns you, but being a parent will break your heart. When you least expect it, you'll be alone with your thoughts and suddenly realize how rapidly time is moving. Your baby won't be a baby forever. I know this statement seems rather obvious, but you're not thinking about your boy turning 18, 21, or 30 when you're picking him up off the ground from a show of independence in the middle of the hallway at your condo building. You're firmly in the here and now, as you should be, trying to hustle him to the elevator and to the car. I try to leave early enough so he has time to pick up a rock, step in a puddle, or touch every plant on the way to the car. I love to watch him explore. Some days I can't see past tomorrow. I can't imagine him any bigger than he is in this moment.
Other days I'm thinking about him learning to play an instrument or heading off to school. These things are years away. This is what it's like to be a parent.
Heart bursting joy mixed with wistful nostalgia and anticipation of a (not so?) distant future.
Today, I was teaching Jonas how to freefall onto the bed. With every fall, he would laugh a little harder at me. Before I knew it, he was being the perfect toddler copycat. In the back on my mind, I was filing the moment away, clinging tightly onto it as tightly as I was hugging him to my chest.
We have to grow, we have to age, and we have to keep moving. I'm just trying to do the best I can to make sure I don't take the little things for granted.

Year One

Jonas's first birthday is six days away. My son is turning one. Months ago, uttering the words "my son" seemed foreign to me. Like they belonged to someone else, and I was just observing. But now, as his birthday is rapidly approaching, they couldn't feel more natural or right.

After sorting through photos of him from when he was first born, I can't believe how tiny he was.

He's been such a little big person for what seems like so long now, I'm already starting to forget just how small he was when he first came into this huge world.

A year is a short time, and a long time all at once. When you're a parent, a year is an instant and an eternity wrapped into one.

Several days ago, I placed Jonas on the living room floor to play, and yearned for a time when I could just plop him down in one spot and he would be content to just lay there, staring at his hands and feet for hours.

Now he is a little boy, speaking words and full of expressions that belie someone much older than his one year of life. He tentatively lets go of one of my hands first, then the other; carefully taking a step or two on his own before deciding that crawling is still faster.

He will still need me for many things for many years to come. He will grow to need me in different ways as each year passes. To me, he will always be my sweet boy, full of sunshine and strength. But as he toddles toward independence, he is one step further from mommy's protective arms, and one step closer to becoming everything I hope he can and will be on his own.

There have already been lots of adventures in this first year. We've seen and done so many things, and been so many places. There are things to look forward to every day that will make this year better than the last. We will struggle and cry, we will celebrate and triumph.

Seeing things from Jonas's size has made me believe in love and life as I never have before.

Thank you, little buddy, for being exactly who you are: PERFECT.