RSS Follow Become a Fan

Delivered by FeedBurner

Recent Posts



EB Awareness Week
powered by

Life After Tyler


....so I have cried my eyes out back then and now. I remember helping them over the next two days make the arrangements for our little man. It was so hard. I even went so far as to help my brother dress Tyler at the funeral home so that P would not be able to be around him. My contempt and loathing for her was so strong most of my life but at that time it was overflowing. My friend would not help- he did not want to have those memories and I understand now. At times I wish I did not see the images in my head that I have. They have faded some with time, thank goodness. Everyone praised my strength for doing everything I did but my hatred was stronger, that's how I was able to do it. Deep down I know that she had something to do with his death. And she has to live with that if she did. I will believe that until the day I die. And I do not think I was the only one. We buried him on Valentine's Day. I have not celebrated that holiday for the last 19 years (my husband & I celebrate Sweetest Day- thank you Hallmark for creating it) :). 
My brother and his wife divorced. His 2nd wife and him had three children but the monster that she is did not want to have anything to do with Tyler so his kids no nothing of their brother. Tyler's grandma still grieves for him I think more than anyone. I know that it hurt our family but it was almost like they all removed themselves from it. We definatley do not have a close family at all. And we are a very small family but we do not know what side of the family has the mutation. It has to be our dad or P because both my brother and myself have the gene mutation. I am very aware because of my kids. EB will end with us. But I have cousins that are newly married and what if it is that side??? It still just amazes me that 19 years later and not everyone in the world knows what EB is.... it affects 1 in 20,000 births people. 
I know that everyone says that God has a plan for everything- I do believe that but sometimes it is VERY HARD!!! Like why did my nephew have to suffer, what was the purpose??? I do not see anything that came out of it except sorrow. And all of the kids and adults that suffer from it- it is agony. The doctors said that Tyler did not know any different so it may not have been that bad for him, a constant tingle like when you have a burn but how did they really know- he could not tell us. All of the parents who have to watch their kids suffer. Watch them cry, hurt, weeping with them....what is it all for God. Most of the time you will never know his plan but this sure would be a great disease to cure!! Prayers non-stop to God for a cure. I do believe that I will never truly understand his plan in this situation, that I just have to accept it. It is very hard-- still. This is where my faith stumbles. 
But I know that I will never stop praying for a cure. Never stop having faith that it will end. That I will never stop plugging away for awareness. When I think about quitting, Tyler visits me in my dreams (or is it God). 
Please everyone share your awareness!! Donate so the brilliant scientist can find a cure!! Let's end this HORRIBLE disease so no more families have to suffer!! #EBawareness #CureEB

12 Comments to 2/12-2/14:

Comments RSS
myessay on Wednesday, September 26, 2018 5:34 AM
Life after someone that has been special in your life is the thing that you are willing to desire for someone special. You are being so strong in life that is willing to get you completing the desires in life.
Reply to comment
online essay writers on Monday, April 22, 2019 10:53 AM
No matter what the situation was, it may be good or bad, always look for the bright side. If you stop believing yourself who would? Life is a long learning process, today you’re up on the next day you’re down. But what more important is you know how to build and compose yourself again. Don’t lose your confidence. To all the friends out there, if you seem someone is having a hard time cheer them up, show that you care for them and you love them.

Trisha on Wednesday, June 5, 2019 1:01 PM
Thank you!

www.topaperwritingservices.com/review-bestessays-com/ on Monday, February 18, 2019 11:06 PM
Your fighting spirit is so high and your faith is so strong. This is an inspiring statement which I think can make people realize many things about that disease. The condition of those people who are dealing with it is so poor and I believe they need our help to make their lives more worth living. This may be a small thing for us, but it will be a huge thing to them. It is not too late to spread our hand with them.
Reply to comment
Trisha on Wednesday, June 5, 2019 9:25 PM
Yes please continue to spread EB awareness. And thank you for taking the time to visit the website. My spirit has been broken many times over the last 22 years but I promised my nephew I would never give up.

write my assignment for me on Thursday, May 28, 2020 8:07 PM
I trully appretiate your work and tips given by you is helpful to me. I will share this information with my family & friends. This is a great website, keep the positive reviews coming. This is a great inspiring .I am pretty much pleased with your good work. You put really very helpful information. I am looking to reading your next post. !!!!
Reply to comment

write my dissertation on Wednesday, June 10, 2020 5:17 AM
I will always let you and your words become part of my day because you never know how much you make my day happier and more complete. There are even times when I feel so down but I will feel better right after checking your blogs. You have made me feel so good about myself all the time and please know that I do appreciate everything that you have
Reply to comment

Navy Blue Jacket on Saturday, June 13, 2020 12:12 PM
Very interesting and wonderful post here. This post is very informative and helpful for a lot of people. I really like it very much. I am very glad and very impressed to read your blog. I appreciate your effort. Thanks for sharing and keep sharing.
Reply to comment

help with assignment helper on Saturday, June 13, 2020 12:39 PM
Very interesting and wonderful post here. This post is very informative and helpful for a lot of people. I really like it very much. I am very glad and very impressed to read your blog. I appreciate your effort. Thanks for sharing and keep sharing.
Reply to comment

Blue Stylish Jacket on Saturday, June 13, 2020 1:42 PM
I’m usually to blogging and i actually appreciate your content. The article has genuinely peaks my interest. I’m going to bookmark your web page and maintain checking for new details. I am looking for some good blog sites for studying
Reply to comment

Fur Shearling Coat on Monday, June 15, 2020 5:58 PM
That is one of the main reasons that I am very much interested in knowing the history of the things. As most of the time their names are greatly related with their history. Also sometimes you can realize the importance of the thing just by knowing its name like this one here shows its importance by its name that is “cure all”.
Reply to comment

Fur Shearling Coat on Monday, June 15, 2020 6:30 PM
This is a good idea for people who actually have some questions or inquiries about this topic. I am so excited to see the discussions that will be made on this thread regarding taxes. I have to say that this kind of topic should really be discussed thoroughly to people who finds it helpful so that there won't be no confusions anymore.
Reply to comment

Add a Comment

Your Name:
Email Address: (Required)
Make your text bigger, bold, italic and more with HTML tags. We'll show you how.
Post Comment