Straight from the Heart

The past week was filled with a number of reminders of how far we’ve come and the immense blessings we’ve been allowed. Friday, I heard about Luca, a week old baby boy, succumbing to HLHS complications. You may have caught this on social media as he is the son of Major League Soccer player and L.A. Galaxy defender, A.J. DeLaGarza. Luca’s memorial service is today. Our heart aches for their family and lift them up in prayer. Their blog, Luca Knows Heart, features some staggering stats on congenital heart diseases. At the other end of the spectrum, is a heart family we know who just celebrated their little boy’s 4th birthday a couple of days ago. All of this leading up to today, which marks 1 year since we found out that the baby we were expecting had a congenital heart defect. So needless to say, I’ve found myself wandering through a wide range of emotions.

9/11 obviously has great significance to our country, a day that will be forever etched in world history. However, a year ago today, September 11th forever changed our tiny little world in ways we could never fathom. The excitement of finding out our baby’s gender was quickly tempered, as our OB doctor entered the room. She is extremely kind and professional, but her eyes betrayed the news long before she said: “but…

So our heart journey began. I think in some deep recesses of our hearts, Emily and I both knew long before that day. We knew that it wouldn’t be easy. We knew that our baby could very possibly have some challenges. I don’t say that as a hindsight boast, but I believe God was preparing our hearts. We miscarried earlier in January, which was followed up by two other couples losing their precious infant children (one which found out on 9/11 two years ago the obstacles that would accompany her arrival). We were wide-awake to the delicate and complex process that takes place as the tiny life forms. All the things that have to go right. All the things you have no control over. All the while, it seems everywhere you look are (presumably) healthy pregnant women, babies in strollers, and toddlers in tow. Most of us walk around taking that very miracle for granted – myself included, as I meander the hallways with 600 plus seemingly normal high school students (normal for teenagers anyway!).

We have now been home from the Glenn surgery procedure for over 5 weeks. What a blessing. Winston is 7 months old, cutting his first two teeth, snarfing down baby food, and trying to figure out how to be more mobile. All things I couldn’t even imagine a year ago.

Earlier this week, we had our first check-up in a month. They called it his “graduation” from CHAMPs (Cardiac High Acuity Monitoring Program), as we now begin appointments with his cardiologist and new team members. The director called him a “rock star,” but reminded us that Winston will always have congenital heart failure. While he won’t be out of the bubble till after a year or so, we can now let him cry out some of his frustrations, since his physiology can now handle that stress. Rhythm issues seem to be evening out and they did not increase any Rx dosages. The team is encouraged by his baby milestone progress… hearing, sight, and neuro-development seem to be on track, but some of this we just won’t know till later down the road.

IMG_0037_2Through this appointment and the other events I mentioned, God continues to reveal how fortunate we are. We don’t claim to be more blessed, more deserving, or more anything to the next family… nothing we have done garnered this result. We just want to give credit where credit is due – to the God who formed us in the womb, who knew us before we were born, and knows the number of hairs on our heads! If I knew then, what I know now… I wouldn’t go back and change a thing. I would do it all over again, to get right here, right now. I wouldn’t trade my wife or Winston for any of it! Maybe that’s what I needed to learn. I need to walk in the constant reminder of the preciousness of life. The preciousness of what our Savior offers us. True life.

#LucaKnowsHeart   #GoFightWinston

One thought on “Straight from the Heart

  1. Very touching, Chad and Emily. We have a grandson who was born with hydrocephalus that wasn’t diagnosed till he was nine months old. A stint was put in at that time and he has progressed normally since that time, although he has a weakness on his left side and no automatic control of his left arm. Through training he has learned to do many things, but the fact remains, that will always be there. He is now a senior in high school, has played soccer all through his childhood and is now on the varsity soccer team. Part of that is due to work he has done with the USA National Paralympic Soccer Program. He has trained with the national team about once a quarter for several years and more in the summer. A year ago he went to Spain with them. His goal is to make the team for the 2016 Olympics or the 2020 Olympics. That said, you are right. We have much to be thankful for, and through the grace of God and many skilled doctors and therapists, parents who cared, and coaches who understood, he is now a very normal functioning young adult looking forward to his senior year and college to follow. He also now drives, skis, etc.. So with the help you have received and the caring parents that you are, and the faith that you have, I am sure Winston will grow to have a very good life!

    Perry and Shari

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