Last night was a bad night. Tyler's fistula line had to be pulled and my parents haven't been instructed how to place on yet. My Dad used to be an EMT so he has placed IVs and Mom has been taught how to but it was a crash course until they could do the real training. So my parents poked Tyler three times and were able to access it. They didn't have to go to the ER. Tyler was screaming and he shed a few tears. I thought how hard the had to be on my parents. They had to place an IV on their own child. So this is for the parents of any child who has a chronic illness. Thank you.
To the parents of chronically ill kids:
You guys are superheroes. No one on this earth could do a better job than you do even when you feel like you aren't doing the right thing. I know you feel helpless like you can't do anything. All you can say is "it will be okay" and "it will be over soon" and "everything will be better" and a cure will come." Don't give up. Most people as a parent could never watch their child go through countless medical procedures day in and day out. Countless pills, treatments, hospital stay, doctors visits. All of that just to try and keep them healthy. You watch them hurt, scream in pain, and cry. You know you can't do anything about it but you will always be there for them. You won't give up you want that cure to come now. You could be like my parents and sit there holding their child in their lap crying because they can no longer eat food anymore. You hold them down while a nurse tries to place an IV. Could you mentally even think about putting an IV in your own child? Mix their medications, make tube feeds, draw blood, make IV nutrition. It is scary to think about. Every night you pray for a miracle, a cure, and just for help to make it through the day. You were thrown into this all at once and you are doing the best you can. I know sometimes you don't think it is good enough but you are trying and that's all we can ask for. No parent should ever have to watch their child suffer like this. Sick kid parents go through hell more than anyone should ever in a lifetime. It's hard I know. I can't lie I watch my parents everyday deal with me and my brother. You are doing the best you can. It's hard but you will make it through this.
Thank you for everything you do. You guys are my heroes!
I am your not so average 22 year old battling Mitochondrial Disease, Gastroparesis, POTS, Epilepsy, MCAS, brain injury, and several other chronic illnesses. These are my thoughts on what it's like to be a young adult fighting several life-limiting diseases.
Michaela,
ReplyDeleteYou stay so strong all the time. You are so right though, I have people tell me all the time that I'm a hero because I live with Mito, but I think they're wrong. Our parents are the true heros here.They are the ones that take care of us and are always pushing themselves to learn how to do that better. I know you're having a rough week, but stay strong, it's going to get better, it has to.