Thank You!

We have had an active Porphyria Awareness Week 2018!

 

  • Thank you to everyone who participated and helped to #SpreadtheWord about porphyria. We are grateful to each and every one of you!!! We reached…
  • Over 19,500 people visited our www.porphyriafoundation.org websit
  • 5,888 people through the Purple Light Blog
  • Over 20 thousand views on Facebook!
  • ….and countless others through your conversation, activities, fundraisers and more!!

 

 

The worst kind of pain is watching someone you Love in pain

by Holly Hamilton

Dedicated to Justin Hamilton        

My name is Holly Hamilton. I am married to Justin Hamilton who has Porphyria (CEP). I still remember the first day I met him like it was yesterday, I was young (only 17). I remember thinking to myself he must have been in some kind of accident. Immediately I noticed his outgoing personality. I was going through a rough time in my life and he was making jokes and making me laugh, which i had not done in a long time. It did not take long for Justin and I to become close and best friends. I came to him with all of my problems even sometimes to complain about boys. I started to see Justin’s struggles with Porphyria and it broke my heart. We spent long nights talking about life and our problems and I knew we would always be there for each other. In the process of our friendship it was slowly turning into love. One day it just hit me “I am in love with this man, He is my person”! That is when it all began. Justin helped me move forward from a not so great childhood i was still struggling with and he helped me overcome that. Justin was always willing to help anyone he could and God knew exactly what he was doing when he put Justin in my path that day. I have never looked at Justin and thought about his scars or disfigurements. I have always looked at him and seen a handsome, loving, sweet, caring, funny, and just great guy. Over the years we got Married and now have two beautiful children. I started to look more into Justin's disease, tried to learn as much as i could about Porphyria and what I could do to help him. Watching the times he would have really bad blisters or be in pain just truly breaks my heart and still does too this day. If I could take his pain away and this disease and give it to myself instead I would! I would do anything for him to be able to live a normal pain free life. I know that will never be an option so i all i can do is care for him the best way that I can. Each day is a struggle. Justin has troubles with daily things like unbuttoning his pants, opening jars or medicine cups, opening doors (his fingers won’t bend), and so much more. I find myself just doing these thing for him every day without even thinking about it. I hate it when people say I just take care of him. No we are in this together and we will fight this together. I knew Justin's struggles the day I married him and I still chose to marry him because he is a wonderful man who loves me unconditionally. I could not once complain about helping take care of my husband. I do not mind taking the extra time and work to help him if that means it well be less painful or frustrating for him to try and do something he just physically can't. Am I saying it's always easy, no definitely not. There are days it's exhausting and I am just drained from taking care of my husband, kids, work, school, and housework. A lot of the times i forget to take care of myself. But I know not to take my life for granted. I know that I have it easy compared to the pain and struggles I have to see my husband endure each day. There is nothing worse than watching the person I love most lay on my lap and cry begging for that pain to just go away. You feel hopeless, and knowing you cannot do anything to make it better. Watching your husband watch his kids play outside while his son is begging his daddy to come play with him some more. But his daddy has already gotten too much sun so he can't go out and play. The look in my husbands eyes as his heart breaks that he cannot go and play with his kids more is heartbreaking. There are nights I get on my knees and pray to God with tears running down my face Why?!? Why him? Can't you just let him live his life without this disease?! Why would you give this amazing guy this disease?!? Why make him go through this? Don't you think he has suffered enough? Please lord just take it away! Just let him live the rest of his life happy, normal, and pain free. Although I don’t understand the Why’s right now I do have faith there is a reason for everything. I do believe God chose Justin because he knew he was strong enough to live this life with Porphyria. I do believe he knew how many lives Justin would change and what an inspiration he would be to others. He has definitely changed mine in a way i never thought was possible. Being a caregiver for the ones we love is challenging but I wouldn't have it any other way! Just remember you are not alone and the physical and emotional toll Porphyria is taking on your loved one is something you can never imagine. So be patient, understanding, and caring in every situation. There are going to be good days and there are going to be really bad days. But knowing they have someone in there corner well make all the difference in the world. Only if i could take my husbands pain a way just for a day. The worst kind of pain is watching someone you love in pain.