infant death — Blog — Melody Lyons

This story was first shared on Facebook by my friend, Jen. I asked permission to share it here and the words written below are hers. I thank God for the gift of Mateo and his amazing parents. May the testimony of his life and death bring courage, hope, and healing to those reading.

Mateo's Story

by Jennifer Calabretta

I'll be honest, I am hesitant to share this story this morning. It starts out as a real downer, ha... But it has been TEN years today since we said our goodbyes to this sweet baby and began really walking down this crazy road that we never saw coming. And while many think it sounds like entirely too much, I cannot imagine our life any other way (especially without Mateo & later our daughter Sofia, and the 2 other sweet babies we have miscarried).

But I decided it is important to share for 2 reasons.

ONE, so many people go through the pain of a hard diagnosis, or losing a loved one, or just LIFE, and it remains only their cross. It is lonely. But life is never something you should go through alone. Grief and Anger require people to talk and share and reach out and cry; just to get through it still standing up! So many people reached out to us, and it made every difference.

TWO... It serves as a reminder to me that God is good. All the time. He walks through every single storm with us, and continues to do so. I do not know how Andre and I (& our family) would have survived all of this without Him. He sent us answered prayers, beautiful kids, homemade meals, loving friends, concerned family, well time scripture verses and moving song lyrics... all reminders that even the HARDEST situations can be gotten through.

So again, I apologize for the toughness of this. You don't need to read our story throughout the album if you don't want to. But I just felt compelled to share this today; and to share that God is always present, especially in our hardest moments. And with Him ALL things are possible. So keep on working through whatever life has handed you; you're destined to win:)

Mateo was born at 12:00pm on April 21, 2007. I finally figured out that I was in labor around 6 am that morning. I think I actually started earlier than that, but because I was only 35 weeks along, I didn't really think that it would be labor!! But when Andre came out to our Living Room at 6am and saw me taking giant breaths and squatting in the "Fat-Man" chair, he sort of figured it out right away....

So there we were, at 8 o'clock in the morning in the Labor & Delivery ER. No nurse really seemed to believe that I was in labor, despite the fact that I was swearing unholy words under my breath between contractions and shared with anyone who would listen that I had no problem giving birth in the wheelchair I was being escorted in if no one wanted to put me in a bed:)

So obviously - it was quickly concluded that I was in labor. 8cm the whole 30 minute ride on the slow and bumpy highway!!! Then my water broke, and we were sure Mateo would just come shooting out (sorry for the graphic imagery:))... but the weird part was that my labor actually stopped then and there. He just decided to slow it down. It would be another 4 hours before Mateo would come; it was really our calm before the storm.

At 12:00pm, the urge to push came and we went for it. 3 good pushed and Mateo was OUT! This whole labor, all we kept saying was, "How is he coming 6 weeks early? My entire pregnancy has been perfect, what's going on?"

Nothing seemed to make sense. And then Mateo was born... and we realized we were in for so many more questions. Mateo was 5lbs 6oz when he was born, with a full head of black hair (as you can see in the photos!!). He had all 10 fingers, all 10 toes, and he was beautiful. Yes, I know I am partial because I'm his Mom... but he was perfect:)

But there were so many problems as well. When Mateo was first born, we had the NICU staff nearby as a precaution because he was early. Little did we know that they would be angels in our midst. Mateo wasn't breathing when he came out, and it actually took the NICU doctors and nurses 10 minutes to get a tube in to help him breathe. His fingers and toes were stiff and misshapen. And his arms and legs were not straight.

We would later learn that the medical term for this is arthrogryposis multiplex congenita. It is a congenital condition that forms in the womb. When muscles aren't exercised during development (as Mateo's apparently were not), they become stiff and contracted. So when Mateo was born, all of his major joints were stuck in this manner. Needless to say, he was flown to the Cleveland Clinic NICU within an hour of his birth... and there we were, left with a whole lot of questions... and NO answers.

But we love(d) him... and that was really all that mattered.

Over the course of the next 2 weeks, we learned a lot of things about Mateo. We learned that whatever he was "suffering" from was probably a completely random occurrence. However, this randomness left him with very weak and brittle bones (that would fracture very easily), misshappen and underdeveloped external body parts, and no responsiveness to us. At least not externally.

I knew, in my heart, that every song we sang him and every book we read him was heard. I know that he appreciated the Lullaby CD that we played for him all day every day. I know that he hated the girly socks I put on him every time we came to visit. And I knew that he loved us - even at 3 days old - I just knew.

And on the inside...he was perfect.

His heart, his organs, his blood... Christlike, right? Broken on the outside, but perfect on the inside.

It was amazing that every day we would keep getting these terrible diagnoses from doctors, and our glimmer of hope for a recovery kept moving farther and farther off ... but somehow, Andre and I knew Mateo was bigger than all of this.

We knew that no matter what happened; that our lives were better having spent it, even a short amount of time, with him.

And a short amount of time it would be.

On a side note - most of my adult Catholic life I have struggled with this image of Mary. Understanding what it is like to be a mother to such a great son; understanding how you just stand by them watching such a great sadness and pain happen to one you love so much... It was always so beyond me... But I will tell you what, my greatest solace - in not only those 2 weeks, but NOW as well - was in Mary. Because it was in those moments that I felt so alone, thinking "who the heck does this stuff happen to?", I knew that there was at least one other person who had... I had a companion. And what greater Mother to learn from...

But May 4, 2007, is not a day we will quickly forget. It is the day we decided to take Mateo off of life support. To some, it might seem impossible to imagine ever making a decision to say good bye to your child. But there was a point, when we realized that the life HE was living was not the one he was meant to live.

We had spent two weeks with NO answers. No reasons. It seemed that Mateo should have been this perfect baby with this perfect life. But life happened differently.

The evening before, on May 3, Mateo's doctors told us that they had done a biopsy to test his muscle for possible answers, but they, in fact, were not able to find any muscle; ANYWHERE in his body. In essence, while his organs grew, his body stopped growing very early on in the womb. And unfortunately, what you don't grow in the womb, you cannot grow outside of the womb. So we were left with no other choice.

It was such a sad day; the day we made that decision. But we knew that Mateo had a greater Life waiting for him in Heaven.

We made sure that we got our whole family together at least once. Dante, our oldest, got to meet his little brother. We thought it was important, even if it only lasted for a few moments.

Mateo mustered all of his strength to stay with us for a whole 15 minutes on his own. They took Mateo off of all of his machines, they brought him and put him in my arms. It was 12noon on Friday. And I breathed in every bit of him that I could.

This picture here is one of the last we took before taking him off of the machines and saying goodbye - and while it is one of the hardest to relive, it reminds me of the Miracle of Life. It reminds me that God is so much greater than the circumstances He meets us in.

It reminds me that on THAT DAY - I MET JESUS ...

And I held Him in my arms, and I kissed Him when He died... and I loved Him, the best way I knew how; and I knew that he held together the pieces of my broken heart so that I could remember every piece of love I had for him.

And I will take that memory with me, every day, for the rest of my life.

And that same love, that I had for my son and my God at that moment, is unequivocally the same love that I have today for my husband, for Dante, for Cabrini... and for our other angels, Jeremiah, Sofia & Gabriel. And it is a love that binds and renews and purifies...

He really is our "Gift of God" (Which, in fact, is what Mateo means in Latin... awesome, huh:).

Amen.

Jennifer Calabretta is a wife, mother, and graphic designer from Northeast Ohio. All photos above are her property and permission must be granted for use.The "Courageous" graphic above is her design and you are welcome to share.