When I became a mother, I was given a very special gift. Not only was I blessed with four beautiful children, but I was granted the special opportunity so see the world through brand new eyes. As I had grown and became jaded to the world's harshness, I realized that my children were born with no assumptions. Innocence. The ability to see the world for the first time, and everything is beautiful and new and maybe a little scary.
After I had Ninja Toddler, I once again got a new set of eyes. Not just his innocent perspective, but a brand new outlook as the mother of a child with special needs. Everything was new to me. Despite having a medical background, walking into the big atrium of glass and colourful murals of The Hospital for Sick Children, a hospital dedicated specifically for severely and critically ill children, took me aback.
Behind each door was a child who required very specific types of care. Walking through each hallway were dedicated nurses, therapists, doctors, social workers, clinicians and administrative assistants whose number one jobs were to rehabilitate each of these children to the best of their abilities.
In each room were parents crying, praying, nodding softly to other parents as they passed by. Looking at their child in bed, holding their hand, whispering "Everything is going to be ok, everything is going to get better, the medicine is going to help, this surgery is going to work. Don't worry honey, mommy/daddy is here."
The colourful façade of the hospital is beautiful, welcoming, almost calming, and done that way on purpose. But in each ward, on each floor, parents and children are experiencing some of the most terrifying, sad, and intense moments of their lives.
The hospital itself is full of warm, welcoming, accepting people, the rooms are colourful and bright. There are playrooms, and clowns and toys and music. The nursing staff is like no other. Going out of their way to bring joy to very ill children, and relief, and hope to their parents.
In this hospital I was told my son was gravely ill. I watched him decline day by day. Going from a bright eye'd tiny baby to a blank staring, still shell of what he once was. The nurses held my hand, hugged me, told me that they were going to do all they could. But with each treatment came more disappointment.
When you're a mother, and you're banking on something to save your child, you tend to put all of your eggs into one basket. And mine were all in the basked of a drug called Milrinone. When Ninja Toddler was intubated and muscle relaxed for an MRI to see just how badly his heart was preforming, I was hopeful it wouldn't be as bad as they thought. I was told that an hour in recovery and they would extubate him and wake him, and I could hold him.
An hour after the MRI, the most incredible nurse came to me, held my hand and said " He is too weak now to remove his breathing tube and wake him. We aren't sure when we can at this time. You can come and see him, and hold his hand. But unfortunately we have to keep him in cardiac critical care until we can determine what is happening with this little warrior."
I did not understand the gravity of what this meant. As I said before, this was all new to me.
While we sat with our son, he was still. So very still. His monitors beeped and beeped, and every few minutes a nurse would come along and say "Oh he's so Tachy" meaning tachycardic (his heart would pump rapidly, then slow, then rapid then slow). As we sat day in and day out, our baby didn't move. He was in a medically induced coma, if you will, to protect his fragile, precious heart. He had lines coming out of his leg, his neck and from those lines came other lines. He was more machine than baby. BUT HE WAS ALIVE. Through his eyes I could see that the world is a scary place, but I could also see that people working together can drastically improve the lives of others.
When the MRI came back that his heart was failing fast, and it was preforming at 7 per cent when a newborn's heart should be at 60 per cent, my hope faded a little. What did this mean for my son? What was going to happen to him?
After a procedure to hopefully stop the heart failure in its tracks, and a new drug introduced called Milrinone, the doctors were hopeful that his heart would recover enough for him to lead a relatively normal life. My hope came back. Even just a little. These people were working so hard for my little boy, and they didn't even know him.
Once he was on the Milrinone and was healed from the procedure, they extubated him. They removed the muscle-relaxing drug that was keeping him still. He was awake and could hold my hand. He made it out of CCCU a few times, but always wound up back there. My basket of eggs wasn't as effective as they were hoping and the Milrinone wasn't enough to get him out of this scary situation.
Finally came the transplant talks and listing him for the surgery. Again, new people were introduced. A whole new family was bestowed upon us as we got to know our transplant team. Our pre-transplant nurse practitioner took us into a meeting and spoke so sweetly and calmly with her beautiful British accent. The calm that surrounded her was contagious.
She shared with us stories of other transplant patients, transplant games for organ recipients, all the incredible lives these transplant recipients lead. I couldn't believe they were out there in the world, running around, playing, participating in events, eating dinner with their families, sleeping in their own beds. To me, this seemed impossible for my Ninja Toddler.
That very special person, whom I still adore, told me two very important things that day that I carry with me. (In actual fact she told us about a million important things and gave us a manual to read -- but there were two specific things that if I close my eyes I can see her saying to me).
One was: "We don't transplant children so you can keep them in a bubble. We want to see these kids out running around, playing games, playing soccer, scraping their knees, we transplant them to give them life back. So did you hear me mom? No bubbles. Let them out in the world." And the other thing she told me was "Ninja Toddler won't be able to receive LIVE VACCINES. This means no MMR shots for your little guy, because he will be on immunosuppressant medication that will not allow his body to fight off the tiny little active agent in the vaccine."
I had no idea at the time how important those words would be to me. I just couldn't believe that my son, who was just a tiny bundle of wires and blankets at this point, could ever even leave the hospital let alone play games our be let free in the world! I was nervous but the most hopeful I had been in months.
After the transplant, things happened rapidly. Four weeks later Ninja toddler was given his walking papers. We walked out of that hospital, saying goodbye, hugging and crying with all these people who had held us up. They had become our family away from family. How could we just take this kid home? I was very afraid of how I would now protect this little boy. But I remembered her words "NO BUBBLES MOM. LET HIM BE A KID!"
Much like that hospital, this world is a beautiful place. There are pockets of sadness and despair and always scary diseases lurking.
Mountains, rivers, oceans, nature, flowers in the spring, the smell of fresh-cut grass, the first snowfall of the winter with the big flakes, the changing of the leaves in fall. All of this beauty comes with a dark side. Diseases of all kinds hide where you least expect them, waiting to pounce.
Those words again: "Don't put him in a bubble mom...let him be a kid...Ninja Toddler cannot be vaccinated against MMR..."
I never thought I would have to worry about measles in all honesty. Since I have been a child there has always been a vaccine and I have never had to experience measles personally. Nor have I had friends or family my age that have experienced it.
My grandparents, on the other hand, had no vaccine in their day, and the stories they tell about the pain, and the fever and how their eyes were so sensitive to light that all the shades had to be drawn are terrifying.
If an outbreak occurred in a home, the department of health (whatever it was called at the time) would put a sign on the door, indicating this home was infected with measles. Not until the last child was cleared would that sign be removed. They could tell me stories of friends that lost their hearing, sight, and even passed away. This was not uncommon. My great grandparents did all they could to protect their children, and luckily my grandparents are here to recant these lessons of measles for future generations to learn form.
Why do you think that our grandparents generation jumped on the MMR vaccine when it was introduced for their children? They LIVED the outbreaks. They desperately wanted to protect their kids from the same disease that disabled and even killed children all over the world.
Thanks to our grandparents generation, and our parents generation, herd immunity was established and that is why I honestly didn't think I had to worry about measles for Ninja Toddler. In my understanding, measles, was eradicated. A long gone disease. I was more afraid of him being exposed to chicken pox since the vaccine for that is fairly new.
Fast forward to today, April 3, 2015. There are 136 cases of measles in Quebec. It's spreading fast considering that this outbreak was allegedly caused by a single returnee from a Disney vacation where the outbreak started.
So that one person has managed to infect 136 people so far. To the west of us, a case or two has just been discovered as of yesterday. Like a run away freight train, measles will jump person to person and eventually make it here. Is Ninja Toddler protected? I sure hope so.
"Don't put him in a bubble mom...let him live his life.." But can I do that when measles is running rampant, and people are refusing to vaccinate? Can I put him in a bubble to protect this live that he struggled to long and hard to have? What about others like him. Can we put them all into bubbles? Restrict their activities? School? Play gym? Is that fair? We would vaccinate if we could! Believe you me. But we can't. So now our immunosuppressed warriors who have fought so hard JUST TO LIVE, have rights and freedoms taken away so they will survive.
To me, in my humble opinion, that isn't fair. If you don't want to vaccinate, don't. But when measles is out there, an airborne illness that is so easily spread, please keep your child home. You are making the choice not to vaccinate. Your child doesn't need to expose others. You say you are making the best choice for YOUR child, then so be it. Don't then make choices for my child too. You complain that by trying to make vaccines mandatory we are taking away your rights. Well by exposing ninja toddler you are taking away his.
And in closing, say what you will about doctors and pharmaceuticals and whatever else you want to. Doctors saved my son. Medications keep him alive. I am a firm believer in medical intervention and my son is a living breathing example of how well it can work. Sometimes things don't always go exactly the way they want, like in our case with the Milrinone, but they will exhaust every possibility there is to save your child.
Tell me, is there a homoeopathic alternative for a heart transplant? So parent to parent, everything else aside, I am ONLY doing what I think is right for my child and others like him. If you walked a day in my shoes, and other parents in our situation, I believe that you would do anything to protect them from anything that could potentially take this life away that they worked so hard to have. I believe we all love our children, so let's all work together to protect all children.
Let's take the ME out of Measles and make it WE.
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