Today is a miracle.
From the day you were conceived, you were a miracle. You were a tiny little person who we never thought we would have. I was sure your sister was the only child I would be blessed with, for reasons we kept to ourselves. I had come to accept that.
And then, in one single day, you were there. God put you there. I cried for hours in disbelief, in utter shock, awe, and miraculous amazement. And for 39 weeks I carried you, so very close to me, I kept you safe. I loved you, I loved you for reasons you could never understand. You were my miracle baby, the baby that I wasn’t suppose to have, but the baby I ultimately needed. You would go on to teach me how to be me, how to embrace God, how to love life, how to advocate, what it truly means to be a mom, and oh so much more.
You were a sweet beautiful little boy. 7lbs 14oz, 21 inches long. Pure perfection. We took you home, we loved you. Your sister loved you, she wanted you so badly. You completed our family. And we would continue to love you, always.
Then one day, I felt unsettled with you. I felt something was just not right (your ears I assumed). It was on that day when our real journey began, when you would show us what a true miracle you are. “I hear a heart murmur,” the Doctor said. As those words rang in my head, I was sent to get you an x-ray, an EKG, some blood work, and a follow up with a pediatric cardiologist.
A couple weeks later when you were two months old. We would see that pediatric cardiologist and hear words that instead of ringing would be forever burned into my brain. “Your son has a serious heart defect.” I remember the millions of emotions that ran through my mind, my heart, my body, my soul, every inch of my body was crawling. I was devastated, terrified, confused, overwhelmed, and I felt anger, so, so much anger. I was angry that this had happened, angry at everyone that said, “murmurs are usually nothing.” At that moment I wanted to punch every single one of those people. But that wouldn’t have changed anything.
We were given a room in the Cardiovascular Care Center of the Children’s Hospital and lots of medical mumbo jumbo; that at the time was just that, mumbo jumbo. We would spend the next week preparing you (and ourselves) for your first open heart surgery. In that first surgery they would repair your valve and you would exceed all expectations. You healed, you thrived, and you went home (on numerous medications) to be Mickey Mouse with your sister Minnie on Halloween.
You would go home, only to return three weeks later, failing miserably. That night I would hear words that would forever ring and burn and haunt my sleep. “He wouldn’t have made it through the night”(without intubation). -STOMACH THAT- You would remain intubated for your first Thanksgiving, and for over a week, before you had your second open heart surgery. This time you would receive a mechanical valve (rare in infants). With this came extra struggles, collapsed lungs, and painful withdrawals where you appeared to be possessed.
You had difficult veins and would require another surgery to put in a broviac line. Then you began healing, thriving, and again exceeding expectations. And we would take you home in time for Christmas.
You lived in a bubble. No one sick was allowed. Hand sanitizer was our best friend. We didn’t leave the house except to go to the doctor. You would receive nursing visits to check your broviac dressing and INR, you were now on Coumadin (a blood thinner). You required twice daily flushes and more medications. And then one day the bubble popped, and you would be diagnosed with croup, and then pneumonia. A week later you would have a low hemoglobin, and within a day or two it would plummet. Sending you (and mom) back to Children’s, this time by ambulance. We would again do the walk of shame as we entered our second home on the CVCC. You would continue to survive on dangerously low hemoglobin for two weeks while they ran never ending blood tests to find out why. Only to find out, it was again, your heart. You would stump the surgeon with a rare perivalvular leak on your mechanical valve, never seen before in their facility. Opinions would be sought from around the country. You would undergo a third open heart surgery. You would be put on bypass three times, and despite the odds you came out with your chest closed and a beautifully beating heart. And again you would exceed expectations and you would thrive. Once again we took you home. Third times a charm.
This time I would be approved to take over complete care of your broviac line so you would no longer need nursing visits. We made new friends in the Oncology department of the local clinic where the nurses would swoon over you as their youngest patient and draw your blood from your line. You would become part of their family.
Again we kept you in a bubble. Yet somehow you got sick. We knew our clinic routine very well. Call at 7:30 a.m. Get in to see your primary. Take the stairs down to Oncology where they would draw your blood for a CBC. Walk back up to Radiology where you would get your chest x-ray and back again to wait for the doctor. Only to learn you had croup, bronchitis or pneumonia, that may or may not be treated with an antibiotic. That antibiotic would send your INR all out of wack and we would spend the next two weeks drawing blood every two to three days to stabilize it again. We’d increase your nebs to what seemed like fifty a day. And we would repeat this cycle often. Thankfully only once ending in an overnight stay at the Children’s Hospital to make sure you were getting enough fluids.
You went through physical therapy to stretch your chest in hopes to help you breathe, through which you thrived yet again. Quickly you began to roll, pull up to standing, and would begin to take steps! You excelled and exceeded expectations, as you always do.
Eventually I got you a referral to a Pulmonologist where you would be put on an asthma action plan and sent for a video swallow study. This resulted in Reactive Airway Disease being caused by aspiration. You would begin to see a speech pathologist for this, she taught you how to use a straw cup, and you completed the vital stimulation program (4 days a week for 4 weeks, and then an extra 2 weeks). Though you would continue to get sick every month and a half. And we would repeat our routine again. Soon you would begin getting sick every two weeks, requiring frequent rounds of steroids and on occasion increased antibiotics.
Your every day consists of medications, nebulizer treatments, line flushes, and making sure you don’t hit anything too hard that could cause internal bleeding as you have begun to walk, almost run. While your life may not be the life we initially pictured, I no longer could picture any other. This is your “normal”, our “normal”.
Many of your milestones were met in a hospital bed: rolling over, your first tooth, the first time you said mom, your first cracker, and many others. There are so many things I feel that we missed. Often I feel that we missed you being an infant. And then there are so many things we got to have first over and over again. Your first smile (we got 4 of those), the first time you nursed (your favorite form of morphine), the first time you squeezed my finger, the first time you opened your eyes, wiggled your toes, your fingers, your cry. And the first time I got to hold you in my arms. I got those experiences, more then once, and every time, the feeling got better. And every time, I loved you more. And I was blessed to be able to spend the first ten plus months of your life by your side, every day and every night.
Your every day will always consist of medical mumbo jumbo. But your days also consist of so, so, so much more. Your smile could light up the night sky, your laugh could soften the hardest of hearts, your happy screech could break glass, your jibber jabber brings joy to a room, your strength is inspiring to many. And then there’s your heart, your beautiful broken heart. Your tiny broken heart. Your heart knows love. It has been shown love. Your heart spreads love.
You my sweet, tiny boy, you are inspiration. You are joy. You are energy. You are light. You are compassion. You are empathy. You are grace. You are thankfulness. You are love. You are a blessing. You are a miracle. You are my miracle.
In this year of your life we have met many new people, many have become friends. We have shared in trials and triumphs. We have prayed and been prayed for. We have run through every emotion known to man. We have changed. We have grown. We have grown closer to God. And while we did not always know what we needed, he did. From that very day he put you where you were meant to be, He knew your purpose.
Today as you turn one I will celebrate. I will celebrate all you have been this year. The good, the bad, the horrifying, and the magnificent. I want to remember it all, without all of those pieces you would not be you. And I love you. Every terrifying (your recent lack of fear while climbing), wonderful (the fact that I still have you to be terrified for), amazing part of you.
Happy First Birthday Charles! Happiest of birthdays to you.
The LORD has done it this very day; let us rejoice today and be glad.
Today is a miracle.