Everyone knows the cliches, the sayings, the inspirational quotes. They all boil down to one thing, “you’re never given more than you can handle”. This rages me. It minimizes and simplifies the hardships we all go through. And boy, do we get some tough things thrown our way. This isn’t just from a grieving mothers position. Just because you haven’t lost a child, doesn’t mean that your struggles are less. I’m so glad that most of you won’t experience this one, but that doesn’t make your dark times less real. Everyones struggles are different, and they are authentic and you have the right to fight through them without shame or fear of judgement.
When we found out that Killian had a Congenital Heart Defect, I felt like I was suffocating, I didn’t understand how it could happen to us. I cried every single day, hard. How could I have a baby and then have to live with the fact that I would possibly outlive him? I’m in the heart of the thing that scared me the most. And i’m still standing, with support, but i’m up. I’ve seen so many parents go through this journey, and everyone of them is still standing too, even when they feel like they can’t. You have strength inside you that you never knew was there. And when you need to, you will tap into that strength.
Before Killian was born, we all believed that he was going to be a candidate for 3 surgeries that would help bandage up his heart. I say bandage, because CDH is not fixable, its never healed. I was expecting to be at Sick Kids for anywhere between 2 and 4 weeks after the surgery. I was so upset. The thought of being away from my boys for that long was terrifying. How were we going to do it? How were we going to make it work?
Then, at my 28 week appointment, we found out that I would have to move to Toronto early, to be close to Mount Sinai for delivery. I was devastated. Tacking weeks onto my time away was heartbreaking. I was going to miss Ryker’s first day of school, miss getting him on the bus for the first time. I was in Toronto for 3 extra weeks. I cried daily. We would facetime with the kids at night, and would all cry. It really was hard, and i’m still dealing with my boys anxiety over me being away for as long as I was.
Killian was born at 39 weeks. For the first few day’s I was a basketcase. The machines, the beeping, the alarms, the medical talk. It was intimidating and emotional and just plain scary. Three days after he was born, we found out that he wasn’t a candidate for the surgeries. There were more complexitites to his heart than we originally knew. So the transplant talk started. I was a total and complete mess. Not only did we now have to process the fact that our baby was in need of a heart transplant, but we were told that we should expect to be in Toronto for 12 months plus, waiting for the transplant, and then 3 months after that dealing with recovery. I was dumbfounded. There was no good answer. There was no question that we weren’t going to fight to get Killian on the transplant list. That simply wasn’t an option for us. But we had to decide if we were going to uproot our entire life, quit jobs and school and leave family, and move our family to Toronto, or be separated for that very long period of time. The decisions seemed impossible.
Unfortunately we never got to make that decision, it was made for us the day Killian died. After more than 2 months separated, and 5 months of preparation, planning, fear, anxiety, sadness, hope…we packed our bags and came home. Without our baby. With stuffed animals, blankets and clothes, and a box with his ashes.
We made it through every step of this journey. Not easily and not gracefully. And that’s ok, there’s no shame in that. I’ve cried and yelled and screamed. I’ve taken anger out on the wrong people. I’ve broken things and said things that were untrue. But we’re getting through it. I’m holding on to everything and keeping my head above that water. Looking back, I could easily say how I was over reacting through the steps, that I had no idea how bad it was going to get. But I won’t do that. This entire journey has been difficult. I’ve had to feel things that I never thought I would. I’ve had to do and see things that I wouldn’t wish on my worst enemy. Every single step of this process is uniquely mine and I have the right to every tear, laugh, emotion and scar. I earned them.
I’m in the darkest time of my life, I hope to God that this is the darkest that i’ll ever see. I’m so lucky to have my kids, my husband, my family and my friends. They have given me the support that I need, when I need it. They haven’t questioned my feelings or told me that things could be worse. Because things can ALWAYS be worse, we all know that, but that doesn’t mean that your current worst isn’t justified.
You CAN get through these times, I promise you. But sometimes we need to get through them with help and support and with tears and anger and rage. By simply saying that you’ll get through it, because you are meant to, makes these deep and real feelings seem weak or unjustified. That’s not fair. And it’s not helpful. It’s not healthy. When you’re in the deepest, darkest moments of life, you just need someone to tell you that they’re there if you need them, and that you’re entitiled to every emotion you have.
For those of you who are struggling right now. And for the rest of you when your next challenge rears it’s ugly head. I want you to know that you CAN get through this. Even when it feels like things couldn’t get worse, and just won’t get better, you CAN. You hold on to the things and the people and the memories that you need to. Cling onto them and hold on like your life depends on it. You’re in the craziest, scariest storm right now, the waves are crashing into you so often that you can hardly breath. But they will subside. They’ll calm. You’ll get through it. Just find a way to keep your head above the water. Don’t let anyone tell you that your raw feelings are unneccesary or unjustified. They are yours, and you have the right to them. Reach out to those life preservers you have around you, be it family, friends or the random (me) who will hold your hand if you need it. You can do this.