Fear is real

It has been a bad week. Too many losses in the heart community. It always seems to hit me so hard, rattling my teeth and shaking my bones. My heart breaks for each and every family that loses their loved one and I cling to Mateo even harder. There is so much deep-seated fear that comes out of its hiding place on days like this. All the worry and fear of losing Mateo too early comes bubbling to the top and is so crushing, I find it hard to breathe between the sobs. It takes time, but I finally get to a point where I can bury the fear again. But every time another CHD warrior loses their battle, the covers are ripped off my fear and it’s there…open, raw and naked….staring me in the face. And that seems to be happening a lot lately. Too often. I wish people didn’t have to face such tremendous pain. I wish there was no such thing as tears of sadness. That only happy tears existed. I know someday that will be true, but for now, it’s just very hard. I resent HLHS. I HATE HLHS and the extreme sadness and shambles that it leaves families in. The heart wrenching pain it causes people and those close to them.


Mateo is doing so well right now. In fact, we just saw his cardiologist for a check-up a few days ago. He got a glowing report and I basked in it all week. Every single person I have met that has been affected by a CHD…whether it’s a CHD warrior, a CHD warrior parent or the parent of a CHD angel…..has described this journey with HLHS as a rollercoaster. Every single one. And it’s true. The day we saw Mateo’s doctor was an absolute high. Mateo has great heart function. No valve leaking. Great O2 sats (for a heart baby) and good blood pressure. Then the days that the CHD community loses another warrior is an absolute low. And the difference from high to low is so swift, so fast, it catches me off-guard. And again I am forced to face Mateo’s real situation. The reality is, he has a heart defect and he could be gone at any moment. That thought numbs me to my bones. I know that none of us have any guarantees of making it until we’re 80 years old, but that fact is glaringly real when I think of our heart survivors. God tells us that our lives are nothing but a vapor…that we’re here for a short time and then we’re gone. But these babies, children and young adults are gone too soon. 20 years is not a vapor. It’s barely a whisper. A candle blown out too soon. I know these babies and children may be better off in heaven, than on earth struggling through life. I know that Mateo would be happy and whole in the lap of Jesus, but I would not be better off. So maybe this fear of loss is really selfishness in disguise. Or maybe its just part of being a mother. For now, all I can do is try to trust. Trust in God that He will do what is best for everyone. Trust that modern medicine will come up with something to save these precious loved ones. Trust that we will someday have long-term statistics for HLHS and know that our kids can have a future. And for now, I will try to cover up the fear with feel-good memories of Mateo’s last appointment. Stuff it down deep so its not staring me down. It’ll be there, whispering in my ear, but at least its just whispering and not screaming. With love comes fear. Because if you have fear, it means you have something to lose.