Without a Crystal Ball

Our Journey through Chronic Illness & Autism

Dear Von,

Three years ago today, I woke up to the hum of machines. There were several of them lined up behind you all with different purposes in saving your life. You were so incredibly sick. The day before you 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 ER, there was a circle of doctors around you and you stopped breathing again. They whisked you in the trauma bay. A sterile, large room that was brightly lit and with a almost a stage like area where more than 15 people would surround 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.

On this chilly morning when I woke up, there were nurses fully dressed in gowns, and they were 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 it was 7, and the doctor’s 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 paci and some sleep.

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 more and more close to the end. I was terrified. There was a 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, and you really had no idea what was going on around you.

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I knelt at your bed, and I prayed to God. I asked him for so many things. I made bargains with him about all the things I would do differently. There would be no lengths I would not go to if he just let you stay with me a little bit longer. I begged him to take me instead of you. Quietly, I told him that if he saved you, that 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 going on 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 Solu-Cortef. We were then sat down and told that 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.

Within 6 hours of starting this new steroid, you started rebounding and you opened your eyes. I knew God had heard my prayers. I knew there was a reason for this, and I knew in that moment that 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 and for too long. But you came out. Then our doctor said to us “The lord works in mysterious ways.” You bet he does. He healed you that day.

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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 the fact that you went from being non-verbal 7 months ago to having hundreds of words and speaking in sentences they have said 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 that 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 that 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

 

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One thought on “A letter to my son on the Anniversary of his near death

  1. Lea Ann says:

    This is an amazing story of love and faith. The Lord does work in mysterious ways and he heard all of your prayers and the prayers of others. Von is a very lucky young man to have such and loving mommy and family. My heart goes out to you and so happy to see Von’s progress one step and one day at a time.
    With love and prayer.
    Lea Ann

    Like

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