When You're Trying to Make Sense of the World After Almost Losing a Child


Most of my writings have been about the past, but now I want to address the present. Lately I have been having difficulty trying to make sense of the world.

It has been three years since our original diagnosis day, and only a few months since we received the news that my son’s doctors think the bone marrow transplant has cured his stat 1 mutation. The process isn’t over, as we still are in recovery mode from it all. Yet somehow, the world thinks we should be moving on and all “better.” What they don’t realize is that parents don’t get the time or opportunity to heal during the whole process, which causes it to take longer.

So if I seem a little “off” in person, this is why.

Caring for your ill child is emotionally taxing on your system. All the information you receive and the decisions you make are overwhelming. Your time is spent dealing with situations outside your comfort zone (likely medically) and watching your child endure pain, fatigue and a world of other issues that become mountains you both have to climb. You suddenly have to learn. A lot.

You feel everything they do, but can’t show or experience those emotions.

You forget to eat. You rarely sleep. You rarely have a moment of quiet where your mind can linger back to happy places and mundane lists. A  shower becomes a luxury you can’t afford.

The medical team(s) focus on the physical treatment of your child. And, if necessary, part of that emotional healing too. Sometimes an extra push is needed, or another department called in, to handle the emotional issues. But there is a team of people looking out for the well-being of your child.

And it can feel like only you are there to look after you.

As a parent, your children’s needs come first. You often sacrifice what you need or want to ensure your children have food to eat and a safe place to sleep. It is no different when your child is unwell. In fact, it is heightened and can leave parents drained and exhausted much sooner than under normal circumstances. During this time, all of your energy is directed at your child and his or her well-being. You can sleep, eat, shower and cry later.

But when later comes, the healing process is difficult.

It is almost as if the motions take three times as long to go through than under normal stress, because you are still trying to manage life and everything that comes with it. And the rest of world thinks you are selfish, emotional, depressed, crazy, obsessive, or lazy because, for some odd reason, you aren’t the same person you were before all this began.

Well, this is what I say. This isn’t just a minor cut you put a Band-Aid on and move on. It’s much deeper than that.

We need time.

We need to go through the motions and take a breath.

We need you to show us some patience.

We need extra love and kind gestures. Still. Because we  are finally feeling everything we couldn’t feel for so long.

We need guidance and encouragement as we try to fit back into a world of circles when we are squares.

We need you to understand, even just for a moment, that what we went through was not our choice.

We need you to take five minutes of your day and truly think about our situation and how you would have handled any of it. We need you to try and walk in our shoes then remember how you felt when you talk to us.

We need to you listen. Yes, listen to all those terrifying and gruesome stories. Or listen to us brag about one seemingly small thing our child has accomplished because they are a big deal to a parent who almost lost their child.

Eventually our good days, our worry-free days, will outnumber our bad days and we will tell stories about those. In the meantime, we need to lean on you while our legs strengthen and we build new memories.

We need you to include us. We were gone for so long, that we lost our place in this book. At times, we feel alienated by those around us whose lives weren’t turned upside down or interrupted by what happened. We have no idea where we stand anymore, nor where we should stand.

We need you to drop the cookie-cutter lines and just say nothing if you don’t know what to say. We have become really good at knowing who is sincere and who is not.

We need you to see this journey is not over for us. Everyday we are one day further from the starting line, but we have no finish line. It is not a race. It is a journey, and we are merely onto a different phase.

We need you to recognize we are still refueling our systems from when they were depleted. We may not have anything to give you but understanding.

We are here. We are getting stronger everyday. We are not useless. We are just different.

We are changed.

One day we will feel comfortable in our skin again. We will be able to stand tall and confident, well-rested and content in front of you and smile right into our eyes. Today may not be that day. Maybe not tomorrow. But we are trying to get there. No one wants us to get there quicker then ourselves.

In the meantime, take us as we are.


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