![]() I don't mean to get too into it with this blog today, but I wanted to express my thoughts as a grieving mother to a person who has never gone through something like this. We weren't under the impression that Leo was going to need a trach, be ventilator dependent, and never gain those innate functions. He is now slowly learning to express his emotions, we are working on expressing his happiness (because he definitely doesn't need taught on showing us how angry he gets! Clearly from this ornery picture!) I also want to preface this by saying that I am incredibly thankful to have a baby as sweet as Leo to still love on. We have almost lost him a handful of times and each time he is sick we become fearful. We are absolutely filled with gratitude to still be able to take care of and raise him. Yet, we are grateful for what we've been through, and I want to share some of my personal thoughts on his trach journey. And why saying the term, "There is a reason for this", may be hurtful and the absolute last thing someone wants to hear. Yes, I know most people meant well when they would say that there is a reason for this, there is purpose in the pain, but would you be able to take me saying that to you when it's about your CHILD's pain? Do you think having 2 renown hospitals go through months of testing all to tell you nothing can be found for your child? No diagnosis, no cure, being in complete unknown? And lastly, do you think I want to hear you say that after having a doctor give me the choice to have my child live or not? (Another blog post I plan on diving deeper as deciding on a tracheostomy for your child is incredibly heavy, especially when it means life or death.) I couldn't stand when people would tell me that this was for a reason and good was going to come out of this. As I was going through this decision, and it wasn't the decision (I knew I was going to have Leo with me no matter what) it was seeing my child in pain after 2 surgeries. It was seeing him go through something that I made him go through to live, and hearing the doctors say that his prognosis isn't good with or without the trach. It was grieving for my child knowing that he wouldn't have a normal childhood and also grieving for both Trent and I knowing we aren't going to enjoy parenthood like everyone else. Nowadays, I am pretty level-headed with where Leo is, he seems to be progressing, we are happy, and love taking care of him at home. He seems like a normal toddler to us with him being so sassy! We just have a different routine than everyone else. He gets fed through the G-Tube, gets his meds, breathing treatments, and just has more doctors appointments than most kiddos. But other than that, when he is feeling healthy - he is just an adorable, little babe like everyone else! Yet, when you are going through the stickiness, it just plain sucks and I seriously questioned my faith, medicine, and everything that humans look to for guidance/comfort. As horrible as this sounds, I felt as if I couldn't lean on God because He allowed it to happen, and I had many conversations with God that I am not proud of. Yet, I'm not perfect, and He doesn't expect me to be. With struggling in my faith, I also struggled with believing in science. Like, seriously you guys? Leo CANNOT be the first baby to have gone through this. With all of these medical advances, there is absolutely nothing you can come up with? Nothing you can tell me to not even cure him - just tell me what's wrong. Nothing. So what is there to believe in after both seem to fail you? All of this hurt and disappointment then to have someone tell you it's for a reason. No. Sometimes it's not. I work Sundays, so I have to listen to my sermons online at my office. I keep going back to this one series. It's 3 parts that he had actually extended for years. The first is titled, "It Will Happen", then "It Had to Happen, and lastly "I'm Glad It Happened". I'm still working on the last one. Yet, it's more so about being glad of what came out of what you are going through. So I can understand that, but there isn't a day that goes by that I wouldn't trade this life for a normal life Leo could live. From the titles you can probably get the gist - bad things will happen, bad things had to happen in order for your life to go a certain way, and learning how to be grateful that said bad things happened due to how your life turned out and what came out of everything. He didn't speak about a reason for these bad things happening. Instead he spoke of the revelations that would come. Revelation over reason, and I've tried my hardest to have faith in what has come out of everything rather than be pissed all the time about why Leo's life is the way it is. He has touched so many lives, I am now FINALLY finishing nursing school because of him, and I have learned true gratitude. So if you happen to know someone going through something somewhat similar. Just know that this is bigger than what you realize. Even if you don't have words to explain how you feel or what you want to say - that is saying something. And it's a whole helluva lot better than saying that things happen for a reason. I don't need a reason. I need a shoulder to cry on, a friend to lean on, and someone I can talk to without trying to tie a reason to everything happening.
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AuthorPresley T. Cruz Archives
January 2021
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