Without a Crystal Ball

Our Journey through Chronic Illness & Autism

Good morning! This week has been incredibly busy at work, so I’m just sneaking this in during a break. Yesterday a friend shared a blog with me written by a mother whose child is special needs. The mother did not like that parents of children with special needs call their children their Heroes. She felt like it further marginalized her child, made her child stand out even more, and held her child on a pedestal that it might not want to be on. Her other point was that she didn’t want her child to be recognized for having a disability. All of these arguments I get, and fully understand, but the article angered me on so many levels. Todd and I actually had a lengthy conversation about the blog on our way to pick Von up from Daycare. It felt good to discuss our views on it, and I felt like perhaps you would like to know why I call this blog my tiny Superhero, and why Von is our Hero.

On January 11, 2013 Von stopped breathing at home. We rushed him to the clinic, and he coded in the waiting room.  He was rushed via ambulance to Children’s hospital.  He was put on oxygen, and he coded again even with oxygen.  The doctors rushed him to trauma, he was intubated and that is when life support started.  Von was unable to keep up his heart rate, blood pressure, couldn’t manage his blood gases, his blood sugar was 7, his body temperature was 91.4, and his liver was failing.  He was on a ventilator, IV glucose, IV steroids, IV antibiotics, IV dopamine, he had heaters under his blankets and they still could only get his temp up to 95 degrees.  The next day the doctors told us a few things, they didn’t know what was causing this to happen and they didn’t know if he was going to live.  They said he was on life support, and had a 50% chance of survival.  Von’s blood sugar was so low it would not even register on the glucose meter, and when it came back from the lab it was the lowest registered blood sugar of any living patient they had seen.  Plain and simple, Von should have died.  These are not easy words for a mother to say, and these memories are painful to think about, but they run through my mind daily.  Von remained on life support as the doctors tried to decipher what was going on.  Through all of it, this tiny little baby remained clueless to what was happening.  He showed us he was alive by opening his eyes every so often, and he would suck ever so slightly on this ventilator tube.  His face was bloated and puffy from the vent, and he did not look like our son.  Within 6 days of all of this, Von was removed from life support and was going to make a full recovery.  If this is not heroic, I don’t know what else to call it.

Von battled an illness that many of us many never face in our time here on earth.  He did it when he was 3.5 months only and weighing only 9 lbs.  He woke up from that fog, cooing and smiling.  He even smiled at me when he was on the vent.  This child is happiest baby I’ve ever been around.  Every day Von gets medication for his condition.  He takes a pill in the morning when he wakes up.  We get him dressed, and then he gets his second medication.  Then we sit down watch some videos, and he gets his first nebulizer treatment of the day.  That alone takes us 10 minutes, and keeping him still during that time is very challenging.  When he gets to school, he gets another nebulizer treatment before lunch; he gets another pill just around 12:30 pm.  Then it’s on to his afternoon.  When he’s ill, he gets nebs every 4 hours because he has asthma.  So on the days he’s ill, he gets 2 while he’s at daycare.  Each treatment takes 10 minutes.  When he comes home from daycare, we have dinner, he plays and then he gets his nightly shot of growth hormone and his final pill of the day.  That’s a lot of medication for a little boy.  He’s on a dose of thyroid medication most adults don’t take, and he does it all with a smile on his face.

Von doesn’t seem to even fathom or understand that he’s any different than his friends, and I know this is because he’s so young.  We are completely prepared for him to have questions about his disease, and why he can’t do certain things.  My guess is this will present challenges, but if I know my son, I have a sense he will take all of this in stride.  Von has an easy disposition.  He’s happy most of the time, and according to the teachers at daycare he is one of the easiest babies to manage even with his condition.  He rarely cries, isn’t overly needy, generally very happy and giggly and will play by himself without any prompting.  Can you see why this child is my hero?  Do you get a glimpse of why he amazes me every single day?  He has a mountain of obstacles in front of him every single day, and he just goes on like nothing is bothering him.  Even after he gets his shot, he cries but he knows as soon as it’s over he will get cuddle time with mommy.  Immediately after, I pick him up, he smiles, and we cuddle and nurse as he falls asleep.  Each morning he wakes up with a smile on his face.  He doesn’t wake up crying ever.  I hear him only because he’s talking in his crib.

I am not putting him on a pedestal by calling him my hero, and I do not expect him to be heroic on a daily basis.  In fact I have no expectations in terms of him living up to being a hero at all.  He’s my hero because he has so many things preventing him from being happy, and every single day he is happy.  I think so many of us could learn a thing or two from that attitude.  As he grows, I expect there to be challenges with managing his condition.  I expect there will be moments of unrest and unhappiness, but it will not change the fact that he’s my hero.

The mother didn’t want people to have her child called out for his illness.  With Von we want people to be aware of his illness, but we do not want his illness to define him.  I will never sweep it under the rug or be silent.  I’m not afraid of how our family appears to others, and I don’t care if people get tired of hearing about his disease.  This is our life, this is our normal, and if someone can’t handle it – take a hike. 

Ok – I’m off my soapbox now.  I think all children should be celebrated whether they are special needs or not.  The special needs kids have so many things in there way, I think calling them heroes is not only empowering to them but will make them feel a bit more normal.


3 thoughts on “Von is my Hero – And I mean it

  1. yes von is a little super star but his mum and dad are an inspiration to all a lot of people should look at Katie and todd and use them as roll models


  2. Arlene says:

    Amen to that!!!


  3. Alison B says:

    If you haven’t seen the superpower baby book then you need to look it up! They have a facebook page. An amazing lady with an amazing message about children with disabilities and rare syndromes

    Liked by 1 person

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