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God love you and Halie Karol..  It is hard for others to understand the pain you go through when you have a child who is terminally ill unless you have been there yourself.. Im serious, if you ever need a friend I am here...

I know, the holidays cause you to stress out even more, I am so overwhelmned... But regardless we hang in there.... Dont we?! Take care.. Sherry

THANK YOU SHERRY, I DO NEED A FRIEND LIKE YOU. I'M SORRY MONEY IS SO TIGHT FOR YA'LL RIGHT NOW. MY HUSBAND IS GOING TO BE LAID OFF IN 1 OR 2 WEEKS FROM NOW. WE HAVE STRUGGLED ALL OF OUR LIVES AND KNOW ALL TOO WELL THE SORROW YOU ARE FEELING ABOUT THIS CHRISTMAS SEASON. I PLAN ON CHECKING OUT JUSTIN'S WISHLIST AND IF I CAN HELP I WILL. GOD HAS ALWAYS PROVIDED FOR US AND I KNOW HE WILL SEE THAT THIS CHRISTMAS WILL BE SPECIAL FOR YOU AND JUSTIN.

Thank you Karol, know that I too know your pain and what you and Halie are going through.. Im here if you ever need a friend.. Sherry

HEY, I'M KAROL AND MY DAUGTHER HALEY IS ALSO 18 AND SHE IS IN STAGE 5 ALSO. SHE HAS POLYCYSTIC KIDNEY DIEASE & MORE....

 I AM PRAYIN FOR YOU AND I TRULY DO KNOW YOUR PAIN.

Thank you for the post Curley

Thank you Curley for the post... Very kind of you

ok, thank you for the info..

My prayers are with you. The only place I can think of off hand is maybe your local freecycle on yahoo, they might have some gently used clothes. God Bless I wish I was able to help you more.

 Today has not been a good day for Justin, he has been so sick.. He cant eat and if he does he gets sick.  I hate seeing him like this, wish I could just take it all away and put it on myself.. I love him that much...

 Please, if anyone knows where I miight get some help for some new clothes that fit him let me know. He keeps dropping weight and hasnt got many clothes that fit.. I would greatly appreciate it...

He is my world!

Dear Sheila, Thank you so much for taking the time to read my post and thank you for acknowledging us period.  You have no idea how good it feels knowing someone else knows where I am coming from and how I am feeling... Numb is a feeling I have come to know as my friend..

I intend on soaking up every moment I have with Justin... He is my world and I love him so much its undescribeable.  I find myself watching him sleep, smelling his clothes as I pick them up to wash them or while putting them up.  I find that I cling on to any little thing that he shows interest in or likes.. Sometimes its silly things, but to me its everything.. 

I also watch him get worse and when you see your son lose 22 pounds in two weeks or see how pale he is it is more than you can stand.  But  as a mother you suck it all up and somehow find the strength to smile.. You smile to keep him from being scared or worried and you smile to keep from falling apart.  Then when you find yourself alone while everyone is asleep or not around you lose it.. Then you pick yourself up just to start another day and go through the same actions again..  Thats what a day is like for those of us who have to watch or children go through a  disease that is taking their lives.

Unless you have been through it or are going through it youll never truely understand how horrible it is to be losing or lose a child..  So, I thank you so much for sharing your pain with me as well... Know I am always here as well if you need a shoulder... God Love you....  Sherry

**I wanted to share this picture with you of Justin and I, it was taken yesterday on his birthday.

comment to sherryberry-I have been following your posts and felt a need today to tell you how very sorry I am for your situation and for your beautiful boys having to endure this horrible disease. There are no words that will ever ease what your going through right now. I know from my own experience what you know also. There is no human pain worse or words to explain having to watch the love of your life slowly slip away from you. My David was 18 when he finally could not fight anymore but for 4 long years we did fight and fight hard. He would have been 40 years old last oct 1st and there still is not an hour of the day that I don't miss him. The very best advice I can give you is to suck in every moment you have with your son, touch, feel, hug, kiss, play, yell, laugh and cry together and embed every second into your brain. Live for the moment only and full those moments with as much love as you can cram into them. My heart is so heavy for you and my tears are falling from my cheek for you. Please know that you will always have him, always--and you will always have people that care and know your heart. Please feel at ease posting me anytime you just want to unload about anything. Your not alone.   sincerely sheila

Well, I feel very blessed today.  My son turned 18 years old yesterday and his birthday was very special.  There was so much love felt at his birthday party, I dont know how to explain it.  Maybe it is the fact that he is dying and it could be the last birthday we celebrate with him or maybe it was because he is now a man as they say you are at 18.  Whatever the reason, it was very heart felt and I will never forget it.

As for his health, things havent been so good for him. His blood is clotting and he has to have another av fistula surgery because the first one did not take.  He is having to take blood thinners now.  That adds 2 more pills to the 24 he takes on a daily basis just to live.  He is so strong and has been a trooper through all of this.  He was having a problem with anger, but that comes and goes along with being scarred.  We have had to face the fact that he is dying and its been hell for us all... But we move on and meet any battle we have to face together... Our love is stronger than any disease or any problems that come our way.

thank you so much rae

Thank you so much for your kind words and prayers... I means a lot to me..

My heart goes out to you and yours. I will pray for you and hope that you will find solice that will carry you through.

Please check out the links to the right of the page to learn more about the medical conditions.. It will tell the early signs and symptoms which could save someones life..

This is a space dedicated to my son Justin and the medical conditions that are slowly taking his life.. A little over 2 years ago he was diagnosed with a rare disease known as Wegeners Granulomatosis.  It is both an autoimmune and vascular disease to which there is no cure for..  It is treatable and if caught early enough can even go into remisssion.  However, without medication and going untreated the disease is deadly and can take you quickly.  There are differents stages of Wegeners.. It includes the sinuses, lungs, skin, joints, eyes, kidney, heart and all vital organs. 

Also Justin is now at Stage 5 Chronic Renal Failure, which is known as "End Stage" Renal Failure.   His life will now consist of dialysis 3 times a week for the remainder of his life, however long or short of time that may be.

I want to make people aware of theses medical condtions.  Maybe it could prevent another child to have to face what Justin has at such a young age by letting people learn the early signs and symptoms...   

Thanks for taking the time to visit our space here on Aidpage.