One thing that helped me, is we went to a jra conference where they had young adults who never grew out of the jra and were speaking about their lives and how they deal with the disease as adults. They had grown into happy successful people, some had spouces and children and others had wonderful careers etc. Basically normal lives. They knew how to handle the arthritis and were ok with it. We all hope for complete remission, but if it isn't meant to be, our children will still be able to grow into happy adults who are able to experience all the joys of life.

My daughter is currently in remission without medication. We STILL worry about her sometimes. Once you deal with something like this, you tend to cling to them a little tighter even after remission is achieved. One positive thing I have noticed that came from her illness, is that she has become a very compassionate person when it comes to other people's struggles in life. She understands something that a lot of people don't think about until they are much older. She would never make fun of another person for being different. She is a very popular girl in school and has made friends with people with all kinds of struggles in life. I am thankful to have a daughter who is so caring about others, and I think arthritis had an impact on developing that characteristic in her so early. 

While we haven't really come to complete 'terms' with our son's JIA...he has some other 'special needs' that we have been dealing with since he was an infant.  Most of the time, I am OK with everything and just thank God that my child has us to love him thru this, lives here (he's adopted from Russia), has the abilty to get treatment,  and has so many opportunities available to him...regardless of his 'disabilities.'  My child will NEVER, EVER be defined by his 'disabilities.'  His future is still full and bright...it may not be what we envisioned...but he will be OK.  (Mom and Dad too.)

I had to 'mourn' all that would not be...cry over the shattered dreams...pick myself up, sweep myself off...and start dreaming new dreams for my little boy.  While there may be things he won't be able to do...I will NOT stop him from trying just about anything.  My son has surpassed so many low expectations that were placed upon him...the sky really is his limit.

We DO hope for a complete, unmedicated remission...we pray to God for a miracle...but we also know that may not be in the cards for him.  But regardless, he will still have the best life possible...arthritis be darned!  He is loved, he is happy, he is silly, he is still our son...and the world is abetter place because of him.   

Now, talk to me about the serious eye/vision issues that were uncovered during his ophthalmologist check up after his diagnosis...and I am scared to death.  We are dealing with major vision loss in one eye that may not be correctable...and the vision in his other eye is not so great.  But as much as I want to crawl under a rock, curl up in a ball, a cry...I can't...for too long.  I will shed my tears and then figure out a new plan of attack.  I have to be strong for him...I have to push him to succeed...to become the best he can be.  I also try to remember how lucky we are...we happen to live about an hour away from the best eye institute in the US.  They have the specific type of ophthalmologist he needs (neuro-ophthalmologist) and offer the testing he needs.  If there is anything that can be done...we are in the best (earthly) hands available.

My son is such a sweet, compassionate, feeling child...he is full of love.  And my daughter...who has been dealing with everything associated with having a sibling with 'issues'...well she is wise beyond her years (in a good way)...an old soul.  She is also so caring, so compassionate...she uses our experiences to her benefit...and who knows what she will accomplish because of her brother and our experience as a family. 

(In case you haven't figured it out yet...we also rely heavily upon our faith.  For us, this has really helped.)

So, hang in there and keep coming here for support.  Having people who understand is huge.  And give it time...it's taken me years to get to this point.

Karen and Alex, 6, poly (04/09) 

What I am trying to tell you is that it is okay to feel that you can't accept this disease because right now you don't have time to think about anything but taking care of your children.  It's okay because everyone gets there in their own time and in their own way.  You will get to acceptance but it doesn't matter when that is.  But I am here to tell you that we have been through the war and while we are still in it, we have come out the other side, and the four of us are still standing and the kids are standing tall and have done well and are ready to start their own lives.  We see where they are and I know you will get there too.

We wish you all the best and if we can be of any help to you, let us know.

Karen