One of the most difficult lessons I've had to learn in the loss of my son, is that I couldn't protect him. I'm his mother. That's my job, right? Well, not always, and it didn't just stop with him. My three perfectly healthy children weren't protected either. They've been hurt in ways that many adults will never experience, and I could do nothing to stop it. What I've learned about parenting is that it isn't our job to make sure "everything is okay" all of the time. Our job is simply to walk through this life with them, and to do the best we can with what we're given.
Sometimes that walk is easier because you get to lead. You get to take a position up front and you get to guide just the way you'd always imagined doing. This is how it's supposed to be. This is how things are done. I liken this to the typical parenting scenarios. These are things like learning how to walk, ride a bike, get good grades, look both ways before crossing a street, go on a date, choose the right college, etc. These are all the things we assume we'll be teaching our children.
It's when life shows you a different path that things start to get a little rocky. Sometimes your journey requires you to walk side by side with your children. They are your equals in every sense of the word. You experience the same things, even if you handle them differently. You can't warn them about what's up ahead because you're getting there at exactly the same time. Your only saving grace in this scenario is that you can still hold their hands. My children and I have experienced this parent/child interaction a lot in the past 2 years. A sick family member puts a strain on the entire family, especially when there are no answers to the questions being asked:
"Mommy, why is Eastie sick all the time?"
"Mommy, why does everyone else get to have ice cream after school and we can't?"
"Mommy, why do our friends get to have sleepovers, but no one can come to our house?"
"Mommy, will I catch what Eastie has? Will it make me sick all the time, too?"
"Mommy, why couldn't it have been me that had the seizures? Can the doctor make it be me instead? Eastie needs a break."
Yes, these are all real questions that I found myself struggling to answer. Early on in the process, I grew anxious thinking about ways to answer without damaging my kids for life. But the harder I tried to say "the right thing" the more I realized that the right thing was just the truth. I spend much of my time telling people to just tell me the truth. Don't sugarcoat it because that's not helpful for me. And then I try to treat my children differently? I can look in their eyes and know immediately that my answer is not satisfactory, and do you know why? Because they can read people, too. They know what's going on because they're doing it with me. So, I may avoid harsh details, but I no longer try to spare their feelings. Instead, I validate them.
Finally we've come to the most difficult part of the walk. This is the part where your children lead, and you must follow. Sometimes we have to be willing to let go, and not only watch them navigate without us, but be willing to learn FROM them as they teach us how to walk with a beautiful mixture of innocence and knowing. I could never have imagined the questions my children would ask, or the things they would say in the face of such a horrific experience. And I'm talking about all four of them. My son, my baby, always seemed to know something that I didn't. His eyes had a way of making you feel like he was much older than he seemed. I've felt that way for quite some time but had never been more convinced than in the last months of his life. I watched as my normally compliant, quiet child began to fight the medical staff over the tiniest things. This child, who had once looked on with disinterest as several needles pierced his skin, now could not even be bothered to deal with a blood pressure cuff. His "weak" side was all brute force when he pulled the instrument from his arm and threw it on the floor. I didn't realize it at the time, but he was teaching me. My beautiful, sweet boy who could never say more than "momma" was speaking volumes with that one movement.
"Enough, Mommy. I'm done. And in a little while, I want you to know that it will be ok when you are done, too."
I thank him every single day for that most precious gift. He showed me the path. He had already seen what was up ahead and he was preparing the way for me. Somehow he knew before I did that there would be pain and doubt and fear. And I will never forget the "answers" I felt from him while he was in the coma. It doesn't matter if anyone ever believes me, and I will never be able to do it justice with words, but the connection between that child and myself was nothing short of miraculous. Every decision we made was made together, and I'll never be convinced otherwise.
The other three children continue to amaze me with their questions because they're driven by a very adult understanding of the ways of the world, but asked with such an incredible child-like innocence.
"Mommy, when I die, will you hold me like you did Eastie?"
Obviously this question resulted in a sort of knife-to-the-chest experience, but I knew immediately that I had to answer it with honesty. I couldn't give the knee-jerk, "Oh that won't be for a very, very long time, and you will be very old" response. Why would I do that? My children know better. They know that life is not a guarantee. But, the one thing I could say with absolute certainty was that if I were still here and it was within my human capability to do so, nothing could keep me from it.
Someday I'll get to guide again, and I'll feel that comfortable familiarity of being able to "protect" my children from some small matter. However, we as a family, are forever changed. We will always know that change is right around the corner, and that our roles will vary at each turn. But we also know that no matter who is leading, following, or holding our hand, each step will be taken together.