Christopher

"At first, I was calm. I understood what they were saying and their approach. Then I was angry. I was so incredibly angry," says Celina. "... Angry that I would have a child that would be in pain and suffer. I didn't think I could survive."

At 20 weeks pregnant, Celina and her husband, Christopher underwent additional genetic testing to ensure they were ready for the newest member of our family. But nothing could fully prepare them for the results they would receive: that their son Christopher, not yet even born, was facing a range of serious arterial and pulmonary heart defects. And that, almost immediately following his birth, he would need to undergo emergency heart surgery.

With grief coming in many varied phases and forms, Celina was struck with a rush of conflicting emotions, emerging eventually with feelings many might not expect from such devastating and life-altering news: gratitude and acceptance.

"When they told me that it was fixable -- that my son would thrive and come home -- I realized we were the lucky ones."

They too felt overwhelming appreciation for the empowering support they received from SickKids' staff during their several-week stay.

"Not only did they make sure I knew every med, every procedure, and every possible outcome, they made sure I took care of myself, and that my husband had just as much support," -- a vital need for caregivers, though often lost along the way.

"The day we left, the discharging doctor said, 'When you go home, he will be fine. You may not be, but he will be fine," Celina recalls.

She soon found he was right: with shifting waves of ups and downs overturning any constant plateau of a neutral state. "My heart broke but felt so uplifted at the same time."

But the new parents dove right in, treading best they could and rising as they found new ways to navigate through the stress and best promote Christopher's healing and growth -- as well as their own.

Side by side, like their little Heart Warrior, they tapped into new powerful sides of themselves, while also learning the importance of approaching life's many curveballs with compassion, patience and grace -- and offering it equally to themselves in the process.

"Everyone expresses differently and thinks differently. We now look at everything in a different light. We try to make each day count, and have been blessed with amazing supports."

Today, they aim to keep channeling that care both inwards and outwards, to foster reinforcement and encouragement for not only Chris and one another, but also a lifeline for other families caught in similarly challenging tides.

"You are not alone. Even if it feels like the odds are stacked against you and there is nowhere to go, we are all a part of an exclusive family. No one really wants to marry into the Congenital Heart Disease (CHD) family, but we are a family none the less," she says, though emphasizing it alone does not define them.

They too discovered that under the surface of the hospital beds and tubes and machines, sometimes fighting for health in the life of a Heart Warrior doesn't look so much like fighting, as it does kindness, joy, a willingness to be vulnerable and most of all, love -- the greatest displays of strength.

And it's with that lens that they proudly capture and share their son's experiences, alongside their family's, whether through smooth or rocky waters. The Webers choose to highlight not just the highlights, but the whole picture of their journey, for their own treasured memories, but also to shine a beacon of light for other CHD families, revealing all they've gone through and can share in understanding, along with the reassurement that, no matter what, there is always hope.

"Other families may suffer in silence if no one steps up to share. But everyone deserves to know where they came from and have the unity of similar experience. Everything our family has been through makes us -- us."

Today, though only 3-months-old Christopher -- and all his family -- truly take on each day by keeping an open heart.

"Christopher will stare into your eyes like he already knows the answers to your questions," says his mom. "He is an amazing baby and has done things we never expected -- attitude and all! He's a bundle of personality, loves sticking his tongue out at his siblings and thinks everything is funny."

"Though too young to tell us what he dreams to become, I'm hoping he can just grow up and be happy."

As for his two older siblings, they help in the special way only children can to keep the big stuff light, and bring excitement to easily-taken-for-granted tasks that can be big accomplishments for Heart Warriors. "Our children love having a baby around. They knew about his 'booboo' and celebrated with us when he was healed and could take a proper bath!"

And the family wouldn't have it any other way.

"My family is my life. Everything I do and have ever done is to ensure they have everything they need, and the supports to withstand anything. I wouldn't choose a different path for our family. As difficult as it was to have a critically ill child, I would not change how it has made us stronger."

And. of course, with having a new broadened view on the scope of life's horizon, they find new meaning in cherishing some of the quietest and humblest of moments, made all the sweeter in the wake of tougher times passed.

 "When all three kids are just going down for bed, giving them a kiss as they are falling asleep," Celina smiles, describing the best part of her day, without hesitation. 

And, despite all the imperfections of life, particularly one touched by CHD, it is those honest and perfectly pure moments of natural beauty that truly do make it all worth it.

 

Jen Allison