One mom responded to me "How do we do it????". The truth is in my experience is I DON'T KNOW! This wasn't what I signed up for. I remember when I was pregnant with Dimitri I wore my belly PROUD and people would look at me funny. I dreamt of my child's future and how he would be the healthiest ever and I would watch him grow into all his dreams.
I was so confused when I first heard about Thalassemia and how it was treated in our case in that time Dimitri was Intermedia not in need of transfusions. So I continued my denial of my kid ever needing treatment. The day the doctor called me and said I need to schedule him for a blood transfusion my world was crushed. Here I was this out going person who even in hard times always looking at the positive way of things, and now I was spiraling into this black hole. Nothing was satisfying, I divorced the man I love and drifted away from my friends, stopped doing the events I used to and crawled into my own living Hell.
I was fortunate the my company paid for me to go to a self empowerment class that changed my world. I am not the same person I was before but I realized there is no, how do I do it, BUT just do it. Then when I found peace again with my husband and things were looking up my daughter had to start blood transfusions, here we went again spiraling down now I felt like I have lost everything. I was able to pull my self out this time and I am not saying I am OK with this because I am not. It has been a roller coaster ride I have my good days and my bad days and I deal with them as they come.
I have to remind my self again and again that I understand there is a different way of life, but they don't. This is their way of life, what they eat, taking medication, going in for many check ups, and monthly blood transfusions, actually knowing all the nurses in clinic, and to be able to talk to the receptionist like she is your best friend. Where "Normal" people don't even remember their doctors name. This is THEIR life.
We as parents need to support them in the journey they were given and allow that to be their "normal" we are lucky that for most 29 days of the month they can for the most part live a normal life, and even if that life ends short they had a quality life. So much easier said than done, but that is why even on a bad day tell them how much you love them and hug and kiss them and I don't care how old they become because we know every day is a gift. They don't always need to know how you feel in regards to knowing the difference, let them live their fullest without that stress of thinking they can't. Yes we carry the burden and again I didn't sign up for this, but they are my life, my existence and you do what you have to do; there is no thinking about it. If anything when I do think it, it is worse, take that negative energy and put it into your love for them. WE ARE LUCKY TO KNOW THESE WONDERFUL INDIVIDUALS! Not just my children but I also have met people around the world who live with Thal and are inspiring I would have never met them if I wasn't where I am in my life today, and believe it or not they give me hope and I hope to get permission to write about some of those individuals later on.
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