A Poem by another Heart mom that describes it all...

I don't know who wrote this, but its beautiful to me because it describes EVERYTHING we have gone through. Its amazing that I can relate to each and every line of this poem and it speaks directly to my heart and for my heart. It describes everything perfectly...the trials we went through in the beginning of this journey: the worry, the uncertainty, the fear and the self doubt. All the physical things we go through on a daily basis like giving boat loads of meds, checking for blue fingers and lips, making sure they're breathing right while sleeping, CONSTANTLY calling the pediatrician's and cardiologist's office and that horrible feeding tube!!......and then the surgeries and hospitalizations and all the feelings that those bring out....and the positive things:  the friends we've made through this that share our thoughts and emotions.....and the hope and trust and confidence we have now. Its all exposed in this simple poem. It amazes me every time I read it, so I'm sure this won't be the last time I share it.


You passed me in the shopping mall,

(You read my faded tee)
You tapped me on the shoulder...
Then asked, "What's a CHD?"

I could quote terminology......
There's stats that I could give...
But I would rather share with you...
A mother's perspective.

What is it like to have a child with a CHD?

It's Lasix,aspirin,Captopril....
It's wondering...Lord what's your will?...
It's monitors and oxygen tanks...
It's a constant reminder...to always give thanks...
It's feeding tubes, calories, needed weight gain...
It's the drama of eating...and yes it's insane!

It's the first time I held him...(I'd waited so long)
It's knowing that I need...to help him grow strong...
It's making a hospital...home for awhile...
It's seeing my reward...in every smile.

It's checking his sats...as the feeding pump's beeping...
It's knowing that there... is just no time for sleeping...
It's heart caths, x-rays and boo boos to kiss...
It's normalcy...I sometimes miss...

It's asking...do his nails look blue?
It's cringing inside... at what he's been through.
It's dozens of calls to his pediatrician...
(He knows me by name...I'm a mom on a mission)

It's winter's homebound...and hand sanitizer...
It's knowing this journey...has made me much wiser.
It's watching him sleeping...his breathing is steady...
It's surgery day...and I'll never be ready.
It's handing him over...( I'm still not prepared...)
It's knowing that his heart... must be repaired...
It's waiting for news...on that long stressful day...
It's ...praying...it's hoping...that he'll be okay.

It's the wonderful friends... with whom I've connected...
It's the bond that we share...it was so unexpected...
It's that long faded scar... down my child's small chest...
It's touching it gently...and knowing we're blessed...

It's watching him chasing...a small butterfly...
It's the moment I realized...I've stopped asking..."why?"
It's the snowflakes that fall...on a cold winter's day...
(They remind me of those...who aren't with us today)
It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!

It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.

And no...we'll never be the same...

It's changed our family...
This is what we face each day...
This is...a CHD

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.