The problem with writing a blog is that there is always so much that I want to say, so many thoughts running through my head, so many exhausting, mind numbing emotions, that I never know where to begin or what each blog post should be about. I put it off and put it off because to write down all my feelings for the world to see is… well its absolutely terrifying and it’s exhausting. So I do what I do best, I avoid it. The reality is though, that I feel so much better once I hit the publish button. So bare with me.
Most people wonder how we do it. How do we keep moving forward when our life is a constant (excuse my language) shit show? I ask myself daily the same question. It really feels like an out of body experience. For example, I think back to a couple weeks ago, when we were at OSF and I try to think about what we did with our time, how we felt. And for the life of me I cannot remember. I just remember standing by Wally’s bed. Sleeping in the family room on the NICU floor. I do not remember how I did it, how I survived each day, I just did.
So I wonder, when this is all said and done, if we ever get to go home, will I look back on this time here in Chicago the same? Will I remember laying on the bed at RMH sobbing in to AJ’s arms because I thought my baby wouldn’t live to see another day. Will I remember the paralyzing fear I felt when he was in both of his surgeries? Will I remember the amount of times I prayed to GOD not to take another baby from me? How angry I was that all of this was happening? Questioning GOD, “Haven’t we already been through enough?” Wondering how I would ever survive if I lost another baby. A part of me hopes that once Wally has a new heart and we are home I can just forget this ever happened. I can forget the sadness, the fear, the anguish we all felt. But as we all know, that won’t happen and it wouldn’t be healthy.
For three years, our lives have felt like a rollercoaster we cannot get off of. There is always some twist, some turn, you think it is almost over, that it will finally come to a stop but it never does. You think eventually we would become immune and just expect bad things to happen. That is not how it works though. As I sit in my sons hospital room, I cannot help but feel that maybe we are just doomed in this life. The pain, the fear, the question of what is going to happen next, maybe that is just all we are meant for.
But than, I look at my sweet baby boy, Wally J. I look at his smile, his will to live, his strength, his determination and I want to hit myself for being so selfish about so many things. Here is a one year old, who all he has ever known is hospitals, doctor appointments, medicines, surgeries, sleepless nights, and pain, yet…. he still smiles. He still charms everyone who walks his way. He still fights.. every.single.day… to simply live. How resilient he is, and how he simply finds the joy in every day, that…. it just literally blows me away. As a mother, you are supposed to teach your children about life, love, and everything in between. But I can honestly say that, Wally has been doing all the teaching. My one year old son has literally gutted me from the inside out and reshaped who I am, as a person. My boys, my sweet boy in Heaven and my feisty boy fighting for his life here in Chicago, have literally changed my life. Because of them, I am now a person who clings on to her faith when everything is falling apart. A person who is more loving, more kind, more emotional, more aware. And the greatest part is not only have they changed my life, but I’d like to think that they have changed some of yours as well.
The thing is… I need to say this. I need to express this. Because it is something that weighs so heavily on my heart. I promise I’ll be done rambling after this last thought……..
This world is filled with so much hate, so much fear, pain, and stupid politics, that I think we as humans should be ashamed of ourselves. Ashamed, because most of the things people are whining about, and crying about, in the grand scheme of things does not matter. There are children of all shapes and sizes literally fighting for their lives every single day, all over the world. Laying in hospital beds not being able to do what we all can do. Like Wally, there are children that only know what being sick is like. They literally do not know any different, or realize how much more there is outside of a hospital room.
Yet, they still smile. They still play. They still love with their whole hearts. And knowing that, and realizing that, it makes me sad and downright angry, when I see everyone complaining on social media about the most ridiculous things. I guess my point is this…. Hug your babies. Love your babies. Stop complaining. Stop playing the victim. Let go of the anger, jealousy, the fear, or what ever bad feeling resides inside of you. Instead, smile. Call up that person you’ve been fighting with. Be the first one to admit your faults, and say sorry. Volunteer. Hug a stranger. Give your free change to the homeless. Love with your whole heart. Do something that makes you feel worthy and proud. But most importantly….do not take a single second of your life for granted. Because we Bastian’s know all to well, that tomorrow is never promised. So… like Wally has taught me, I will do my best to live every day like it is my last, with a smile on my face.
Thanks for reading.
Until next time,
–Wally’s Momma 💕💕