A Letter to My Son on the Anniversary of the Day He Almost Died


Dear Von,

Three years ago today, I woke up to the hum of machines. Several of them were lined up behind you, all with different purposes in saving your life. You were so incredibly sick. The day before, you’d stopped breathing at home and we had to rush you to the hospital. It was the scariest moment of your dad’s and my life.

When we finally got to the emergency room, there was a circle of doctors around you and you stopped breathing again. They whisked you in the trauma bay — a sterile, large room brightly lit and with an almost stage-like area where more than 15 people surrounded you. They intubated you, and as I looked over I saw your tiny little belly fill up with air. I was shaking, and I didn’t understand what was going on. Doctors assured us you probably just had a virus and that because you were so young you would need a little extra help breathing. They said we would spend a couple days in the PICU and hopefully go home good as new.

That chilly morning I woke up to a group of nurses fully dressed in gowns, taking your body temperature and blood. They said your blood sugar was still really low. In fact, it didn’t even register on the glucometer. When the results came back from the lab the reading was 7, and the doctors said they didn’t know how you were alive. I tried to read you a book that day, but I couldn’t do it. My tears were too hot and my cheeks were raw. I couldn’t get words out of my voice because you looked so helpless on the ventilator. When I looked down at your cute face, I would see you gently sucking on the ventilator tube. It was your pacifier; after all, you were still a baby, and all you really wanted was a bottle, a pacifier and some sleep.

baby in hospital
Von in the hospital

Every minute of this day felt like a lifetime because we didn’t know what was wrong. The doctors told me your liver was failing and that your blood was no longer clotting. It was becoming closer and closer to the end. I was terrified. There was an empty hole in my stomach, and my heart was breaking in to a million pieces. I sat quietly next to your bed. I would stroke your hair, hold your fingers and kiss your cheeks. Your eyes were barely open.

I knelt at your bed, and I prayed to God. I asked him for so many things. I made bargains with him about what I would do differently. There would be no lengths I would not go to if he’d just let you stay with me a little bit longer. I begged him to take me instead of you. Quietly, I told him if he saved you, there was nothing I wouldn’t do to keep you safe and help you stay healthy. I would go to the end of the earth to help you recover from this illness. I told him it didn’t matter if your brain never rebounded; all I wanted was to be your mommy.

That day I reached out to others, and I asked for them to pray. In a moment of exhaustion, I went online to update friends on your status. I saw prayer after prayer on my page. There were chains happening all over the world. You were only 3 months old, and you had thousands of people around the world lifting you up in prayer. Every moment you sat unresponsive, I continued to pray and beg God for a way to get you out.

Three years ago tonight, Dr. Orioles got an idea and decided to give you the steroid Solu-Cortef. We were then sat down and told you needed to rebound in the next 12 hours or you weren’t coming home. Your dad and I held a vigil around your bed, and I begged God again to save you. All I wanted was more time to be your mommy; it didn’t matter what was potentially flawed in your body, I loved you. I told God we would do everything. I’d take you to doctors, nurses, therapists, whatever you needed. I would take care of you.

baby in bed
Von at home

Within six hours of starting this new steroid, you started rebounding and you opened your eyes. I believe God had heard my prayers. I knew there was a reason for this, and I knew in that moment even if you had a major disease I would still be able to take you home. The doctors could not believe it. They said there was no possible way for you to be coming around. They said your blood sugar was too low for too long. But you came out. Then our doctor said to us, “The Lord works in mysterious ways.” You bet he does. We believe he healed you that day.

We came home 17 days later. I kept my promise to God to do everything I could for you. We have you working so hard in therapy to help with your neurological impairments, and you are learning and thriving. Your therapists tell me all the time you are their happiest and hardest working child. They marvel at your tenacity to learn, and they have said the fact that you went from being non-verbal seven months ago to having hundreds of words and speaking in sentences is a true miracle. You may have hit your milestones later than most kids, but you always hit them.

There are days you are so frustrated because your body won’t do what you want it to, but you never complain and rarely cry. You were given the most beautiful disposition and personality. Everyone who meets you falls in love with you. When I made those promises to God three years ago, I meant every word of them. I will keep on fighting for you, advocating for you and helping you reach your maximum potential. It doesn’t matter to me what you achieve, but that you achieve what you can in your own time.

Every day I wake up and I know I get to spend the day with my hero. I get to be surrounded by the most amazing child. I don’t know if you even realize how that makes me feel. Though we still have a long way to go, I am so proud to be your mommy. I love you to the moon and back. I will never stop fighting for you as long as you keep on being my Vonster.

With Love,

Mommy

Follow this journey on Without a Crystal Ball and Von’s Super Hero Facebook page.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.


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