Jenna 12 yrs old

Jenna 12 yrs old

Monday, August 15, 2011

Wishing for happier times

It's the beginning of another school year and while all the other kids are excited to be back in school with their friends, Jenna is frustrated with the fact that she will not be able to go to school full days again this year.  This just breaks my heart as a Mom.  I wish I could take her pain away, I wish I could make her smile.  She has missed so much not being able to go to school.  Although she has been able to keep her GPA at a 4.0, she has missed out on making new friends, getting involved with clubs and most of all the things that 13 year old girls do.  She will turn 13 in two weeks and she has been so excited planning her "big" party.  I wish I could be that Mom that is running back and fourth to Cheerleading practice, back and fourth to Dance class, instead I run back and fouth to the Doctors office and hospital for IV treatment.  I don't want to sound selfish when I say that, I just wanted so much more for my kids.  Don't get me wrong I have great kids and that is one thing that I would NEVER change, I just wish I could change the medical issues.  Jordan has had to work so much harder than her peers to get where she is at.  I am so very proud of the beautiful young women that she is turning into.  When we see our child hurting we try to do everything in our power to fix whatever it is that is broken.  How do you fix sickness and illness?  How do I find the answers?  With Jenna's disease being so rare it is difficult enough to find infomation on her illness, let alone how to explain it to others.  At times I feel so alone in this battle.  The panniculitis issue seems to be getting worse no matter what we do.  The Doctor pulls back on the treatment and her labs go up, she develops more "spots", he gives her more meds and she is sick all day long.  When is it enough?  I find myself asking..."Why me? Why Jenna?"  I wish someone could answer that question for me.  I know that there is so much sadness in this world and that we need to find the good in everything we do, but at times that is difficult for me to do.  As for the schooling issue for Jenna, she will have the same homebound teacher that she had last year so that is going to make things so much better for her both educationally and emotionally.  My Wish for her would be that she would feel better and be able to keep up with her peers.  She has lost her childhood to dermatomyositis.  It has been a long 7 years since her diagnosis.  She was so little and sheltered from the world.  Things were simple and fun then.  It has been one heck of a roller coaster ride.  I have spent countless nights looking for any new information that I can find.  From what our Doctor has told us, there are not even 30 cases of panniculitis in the country.  That doesn't leave us much to go on.  Believe me whatever info is out there I have found it!  We will continue her weekly infusions and go every few weeks for IVIG.  Her oral medications have changed a bit, but for the most part have been the same since the panniculitis dx in January 2010.  I pray that we will find something that will work and get this issue under control.  I know that I don't write much but I will try to update a little more than I have been.  I appreciate all of the support that you all continue to give to me and my family.  Without the love and support it would be so much harder to deal with.  Thanks I will update soon.

1 comment:

  1. Hi there! I stumbled across your blog. I have JDM, I was diagnosed in December of 2000, when I was just shy of 13 years old. I just wanted to say that if you want to talk about anything (or if your daughter wants to talk to someone who knows what she is going through) please feel free to contact me []. :)Your family is in my thoughts and prayers.