Summer Fun/Summertime Blues

On Thursday, my little boy will be finished with Kindergarten. I am so proud of him reaching this milestone!
On Friday, we're spending four days at Disney. What a perfect way to kick off summer! We'll ride all of his favorites, plus a couple he wasn't tall enough for last time. We'll eat good treats, meet characters, and swim.

I have been looking forward to summer break, because I can't wait to spend time with my favorite person, doing whatever we feel up to!
We'll hang out with our friends, practice reading, go to the splash parks, and have lazy days watching movies.
We'll also have a visit to Nicklaus Children's Hospital. We've been advised that Jonas should visit the Neurodevelopmental clinic, just to ensure that he is developmentally on track. We have no reason to think anything is wrong with Jonas's development. However, having a complex congenital heart defect (CCHD) is reason enough to be evaluated, especially because he was delayed in his first year of life.
Jonas is also due for a check-up with his cardiologist in July, though we may be able to forgo it if we have to do a stress test and echo at Nicklaus.
These are all "routine maintenance" items, so to speak. Jonas is as healthy as he can be for having half a heart. He is happy, well-loved, and spoiled rotten by everyone around him. But the hospital is an anxiety-inducing place for us both, under even the most ideal circumstances.
Our heart journey has been relatively smooth, and I struggle with mentioning anything at all. We don't have weeks or months of hospital stays.
We don't have an uncertain path. We don't have any upcoming surgical procedures. We are not listed for transplant. We are not in rehab. These are things many of my dearest heart mom friends are currently experiencing.
I am thankful for every moment I spend with Jonas, inside or outside of the hospital. But this does not make me any less afraid. Fear is a constant companion in my life. I am not saying this to evoke pity or sympathy. This is just my harsh reality. I am always living with some degree of fear, for what the future holds for my beautiful, bright son. There are so many uplifting blogs online, detailing how one must remain positive, and cast aside all fear and doubt. If you've spent 5 minutes speaking to me, you know I am able to put a positive spin on anything.
But I remain pragmatic. There will always be days that CCHD is the last thing on my mind. There will always be days that CCHD is the only thing on my mind.

Yesterday, Today, and Tomorrow

Jonas,

Yesterday I held your hand tightly, while tears streamed down my face.
I could not hold your body, there were too many wires in place.

Today I held you on my lap, you barely fit there now.
I'll keep holding you anyway, as long as you allow.

Tomorrow you will be as tall as me, I can't wait to see you grow.
There are so many things I am excited for you to know.

Yesterday I was afraid, of what tomorrow would bring.
Today we're here, and you are strong: We've been through everything.

Yesterday I watched the surgical team take you away from me.
Today your heart is beating, because they repaired it carefully.

Tomorrow I will watch you run and play, without so much as a care.
Yesterday I wasn't sure, that you would ever get there.

Tomorrow is not guaranteed,
not for you, nor for me.

But I promise you today,
you are loved in every single way.

~Mom

Everything Birthday is a Victory

When you're preparing to become a mother, there are some things you aren't given advanced warning on. Some of it is silly: like the fact that babies indiscriminately fart on everyone and everything. Some of it you cannot predict: like your baby will be born medically fragile, and you will count every birthday thereafter as a victory.

This week, Jonas will be 5 years old. This morning started just like any other. Luis opened Jonas's bedroom door, and sang him the good morning song. (One of us always does: "Good morning to Jonas, good morning to you. Good morning to Jonas, I'm happy to see you!" This started too long ago to recall, because when Jonas was a toddler, he'd say: "Happy see you.")

We snuggled on the couch. He pitched a fit when I turned the tv off so he'd focus on eating and getting dressed.

I am thankful for every snuggle and every tantrum. My boy has a strong will, and the strong lungs to match.
I gave him a voice to fight. A voice to laugh. A voice to cry.

I've been crying this morning. Tears of sadness for one heart family, whose son is struggling through a difficult post-Fontan recovery. Tears of joy for another heart family, who just had a beautiful Make-A-Wish trip with their son, who is beaming in every photograph. Tears of relief that we are celebrating this weekend without an impending procedure, for the first time since 2011.

I recently mentioned Jonas's heart condition to someone that doesn't know us well. She said: "Oh, but that's something he'll outgrow when he's older, right?" I tried (and failed) to stifle my incredulous laughter. I shook my head and said: "No, he's missing his left ventricle. He's already had three open heart surgeries."

She means well. She doesn't understand the various and complex congenital heart defects. 5 years ago, I didn't, either.
But it makes me feel like my work as Jonas's advocate is never enough, and will never be done. There are so many people that equate "heart defect" with "non-life threatening murmur."

In honor of Jonas's 5th birthday, I ask that you please share some facts about CHDs on social media. Creating awareness creates understanding. You can copy and paste these directly, and even use Jonas's photo.


Here are 5 facts about Congenital Heart Defects, also known as CHDs:


1. Congenital heart defects are America’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.

2. Twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

3. Single ventricle heart defects, such as Hypoplastic Left Heart Syndrome, (Jonas's condition) are among the most complex and challenging forms of congenital heart defects to treat.

4. Surgery is NOT a cure for a CHD. You can repair the heart, but there is no cure for a CHD.

5. There is no known cause for CHD. Only 15 – 20% of CHDs are related to genetic conditions.



Happy 5th Birthday to my sweet boy. I'm looking forward to celebrating the victory of every year hereafter. <3

Just a Normal, Average Day

I will never know what it's like to raise a "normal" child.

We try to normalize Jonas's childhood as much as possible. We never want him to feel different, or excluded. No one likes to feel that way. Things are pretty "normal" for us, in some ways. In other ways, they're just...not. They can't be.


We wake up every morning between 7 and 8a.m. Pretty "normal," right?

Jonas can't eat breakfast until he takes his anti-reflux medication. This is a new medication he's on, and insurance doesn't cover it in liquid form for his age. So every day this week, we've had to goad and harass him (sometimes into a tearful rage) to either swallow the pill (yeah, right) or suck the pill's contents up through a straw from the bottom of a cup of juice. NOT NORMAL.

After 15 minutes, Jonas can eat breakfast. NORMAL.

After breakfast, Jonas doses himself with Enalapril, (for heart squeeze function) Lasix (a diuretic) and half a tab of aspirin. NOT NORMAL.

We usually watch some cartoons. NORMAL. Play outside with matchbox cars or his ball. NORMAL...except then he gets winded and sweaty because his body doesn't circulate and oxygenate like it should. NOT NORMAL, time to go back inside.

We sometimes grab a snack. NORMAL. Then we'll draw, color, or do an activity book. NORMAL. Sometimes when he's learning, I have an internal dialogue about whether Jonas is struggling with memory recall because he's 4 and has a corresponding attention span (NORMAL) or if being on bypass for 3 open heart surgeries has caused minor yet long term damage to his brain. NOT NORMAL. LOL

We usually have some quiet time with more cartoons, read a kid-oriented magazine, or play educational games on the computer. NORMAL.

During quiet time we'll snuggle, and here comes the internal dialogue again: "Is it ok that he's breathing heavily?" NOT NORMAL.
"Jonas, are you ok, bud?" "Yeah mom, just watching tv." NORMAL

Sometimes we run errands to the store. NORMAL. Then a rotten-sick looking guy comes within a foot of me, sniffling and sneezing, and I hope he doesn't make my kid sick because of his weak immune system. NOT NORMAL.

Every 6 months, we visit the cardiologist. NOT NORMAL.

Last week, I had to fill out paperwork for Jonas to enter Pre-K. NORMAL. The questionnaire asked: "Do you have any additional comments or concerns?"

Well. Yes. "Jonas has Hypoplastic Left Heart Syndrome. If he over exerts himself, he may need to rest, but he will let you know. Sometimes his lips turn purple when he's cold. It's ok, and not a real cause for concern." Instead of listing his pediatrician first, I listed his cardiologist first. NOT NORMAL!!! Come to think of it, I forgot to mention the fact that if he gets a scrape, the aspirin he's on thins his blood, and it'll look like a horror scene, but it's not nearly as bad as it looks. Sigh. NOT NORMAL.

Luis comes home from work. We have dinner, snuggle time, and sometimes reiki or meditation. NORMAL.

Jonas argues about going to sleep, and bargains for one more hug and kiss. NORMAL.

We lay down and go to sleep. NORMAL. In the morning, if I wake up first and Jonas is sleeping later than usual, I have another internal dialogue about what could be causing him to sleep so late. Is he just tired? NORMAL. Is it heart related? NOT NORMAL.

As much as I try to convince myself things aren't so different for us, I know that's not true.
I try to make it routine and fun in its own way. We're just doing the best we can, the only way we know how.

Roller Coasters

Two weeks ago, Jonas rode a roller coaster for the first time. We went to Magic Kingdom for one of Luis's media events, and Jonas had the opportunity to preview the Seven Dwarves Mine Train coaster. By all accounts, he loved it. He squealed, he laughed, and he asked to ride it again.

We came home from Disney, and so began our own roller coaster: One of a different sort altogether.

Jonas has been complaining of chest pains, off and on since January. He's had several echocardiograms, EKGs, holter monitors, and event monitors. None of these have caught anything out of the ordinary. Still, the pain persists. I cannot easily convey to you what it feels like when your child, a child who has had three open heart surgeries, complains his chest hurts and his heart is beating "too fast."

Last week, we visited Miami Children's Hospital twice in search of answers. By Friday, arrhythmia had not been ruled out entirely, but it had been moved to the bottom of the list of concerns. At the top of the list are gastrointestinal issues. He has a GI appointment next week. He will also need an exploratory catheterization, we're just not sure yet how soon.

By Saturday morning, Jonas had a fever. We stayed in bed all day watching cartoons and hoping to catch a break.

As I write this, it's Wednesday night. He has not complained of chest pains all week. His fever is gone. He still has a congested cough, but everything else appears to be fine. We're constantly in a state of flux. Things are good, things are bad, things are good again. This is not what I expected post-Fontan, but I should know by now not to expect anything to be smooth sailing. That is just not how things are meant to go, and this is our reality.

Tonight, Jonas fell asleep in the car on the way home from dinner with our friends. I gently scooped him from his car seat, as I have done hundreds of times over the last nearly 5 years. He softly whispered to me: "We're home? I'm tired." I pulled his long, lanky frame close to my chest, his body limp next to mine. He rested his head on my shoulder, his smooth cheek pressed against mine. I kissed his head as he whispered: "I love you, mommy." I couldn't help but think about what a completely ordinary moment this was. My little boy, ready to be tucked in for the night. Snuggled up close to me. In this ordinary moment, there was no congenital heart defect. There was no hospital, no procedure, no impending sense of fear and dread. Just a mother and her son, sharing small space in a vast universe.

In reality, this recent trip was not Jonas's first time on a roller coaster. We are constantly riding one. Tomorrow, I choose to laugh and squeal with Jonas. I wouldn't have it any other way.

Post-Fontan!

Merely typing those two words: "POST-FONTAN" feel like a weight is being lifted from my shoulders. We're just under a month from the date of Jonas's final surgery, and every day we see more positive changes.
On Friday, Luis and I took him for a bicycle ride in our neighborhood. I used to be so proud of him for riding the two blocks to the playground near our house. I wanted to conduct a test, so I asked Jonas if he wanted to ride further. He said he did. I checked on him several times throughout the ride, so much that I think he was starting to get annoyed with me. By the time we reached Holiday Park, Jonas had ridden his bicycle nearly 2 miles. From two BLOCKS to two MILES. I was flabbergasted.

Jonas has always been an energetic little boy. But there's no more "I need to take a break" after long spurts of energy.
His color looks great. He has rosy cheeks and pink toes. Beautiful, dark pink lips.

We went through hell in the hospital. For 11 days, I witnessed his tiny body enduring more pain than most adults will know in their lifetime. And yet here he is, riding in the backseat of my car, singing songs and telling jokes.

I treasure his laughter...I always have. Especially now, after seeing him so hurt and sullen.

Every day I am given with Jonas feels like a gift. As corny as that may sound, I truly feel that way.
I have waited so long to write this blog, because I really don't want to rehash the hospital trauma.
We are able to move forward together happily, and in good health.
I couldn't ask for anything better to happen in my life, than to have Jonas healthy and happy.

He will always need to visit the cardiologist for check-ups. He may need small "tune-ups" into adulthood.
But I am remaining optimistic that the worst is behind us now.

It's wonderful to be home!

Mother's Day

There is no way to fully express what it is like to be a mother, but I am going to try.

In the months leading up to Jonas's birth, I wondered what it would be like to love him. Of course, I was already starting to understand, but I knew it would evolve once I met him. Little did I know it would continue to evolve and grow constantly.

I adore him with the kind of love that you can barely put into words. He is a fun person to be around. He makes my heart ache with joy for everything he is, and everything he is yet to be.

With each passing day, I learn more about him. His likes, his desires. He is happy, chatty, and outgoing.  Despite this, he is quiet around large groups, until he gets more comfortable. He is a storyteller, a natural born performer, and a touch sensitive. The older he gets, the more I realize how much he is like me. How he is just like I was when I was a child.

I want to give him everything in the world he could ever want, but I don't want to spoil him.
I want to spend every moment playing with him, but I don't want to smother him.

I want him to have endless amounts of happy experiences, but I understand he needs to feel pain and disappointment, too.

I don't want to fuck this up. I don't want to fuck him up. Every decision I make, I hope is the right one. The best one for him. Sometimes I feel like I'm doing good. Other times, I just try my hardest, and hope he will grow up to see that.

Being a parent is a constant balancing act. Being firm and being fun.
It is a daily test of patience. You are pushed to your limits and wonder how you can possibly make it to bedtime without losing your damn mind. But then, you do. And the next day is better, or filled with different challenges.

There is laughter, there are tears. Every single cliche you've ever heard, and then some.
I find myself scooping him up in my arms and wishing the moment could last forever; looking down at him giggling at me and asking me to "kiss me so hard". I want to bottle that moment up, but he's already running away to grab his cars or build a Lego tower.

Happy Mother's Day to all of my mommy friends. I'll be cheering you on through every victory, and consoling you through every defeat. There will be many. But just know that you are loved, and we are doing the best we can.




Sneaking in a photo during yesterday's snuggle time ;)