Saturday, November 17, 2012

From the Voices of Families....

First off, know the following entry is from a new friend of mine that God brought to me (she gave me permission to share).  Her son has juvenile arthritis (like Savannah's, but more severe) and this is how I came to meet this wonderful lady.  Beware, the following information is powerful.  To view blog where this information originally came from, go to:
                                                                               -Jenny (Savannah's mom)

From the Voices of Families….

Recently I asked families of children with Juvenile Arthritis, if there was 
anything they wanted the general public to know about JA what would it be…
This list below is a paraphrased summary of their very heartfelt responses.  
Just a window into the lives we live, thoughts we have, and strength our 
children possess.  From the voices of families…
·         Juvenile Arthritis is not an old person’s disease, it’s autoimmune
·         It affects internal organs, not just joints
·         Our children are not “fine”, just because you look good or are smiling
·         It hurts, even when smiling
·         It is more than just hurting joints
·         It affect joints AND muscles, skin, internal organs, personality, mood, 
emotions, and engagement/activities with others
·         It can be as bad as cancer…just because my child is not bald 
doesn’t mean he/she is not suffering
·         Kids do not always grow out of it when adults
·         Kids’s with JA can be as severe and worse than adults’ RA
·         There is no cure
·         It is not an old person's disease - it is an autoimmune disease!
·         it affects more than our children's "health" affects school, their 
relationships, their play, their quality of life...
·         it can attack anyone, at any time and we don’t know why
·         during one hour of the day they can look fine, and an hour late it can 
hit them hard
·         it can blind, cause deformities, and even kill
·         it does not discriminate
·         We also don’t know what these drugs will do to their bodies down 
the road.  Will they be able to have children?
·         It affects not only their health.  It impacts their school, relationships, play, 
and quality of life
·         Praying for relief so my child can live a normal life…for some this comes, 
for others it takes much longer, and yet others continue to have 
bumps in the road and struggle.
·         If the cure was spices, vitamins, and other crazy mixtures, all these 
children would already be cured
·         The roller coaster ride is never ending…bad days, good, days, 
emotions, doctors, stress, expenses, meds, remission, 
active disease, medicated remission, …and yet life continues 
to go on and we try to enjoy life and a happy childhood.
·         We do everything we can to let our children be children
·         It is not the same as grandpa’s arthritis, which is osteo….
this is autoimmune and my kids may be cute but they hurt BIG time.
·         When people think our kids are fine and question our requests 
for prayers because they look fine, it is hurtful.
·         Brothers and sisters become fearful, emotional, and wonder if they 
too will get this.
·         The amount of chemo our kids use over their life-time is more 
than some cancer patients
·         You see my child smiling…I see my child when he/she cries, 
gets blood work, can’t sleep, goes through physical and occupational 
therapy, sleeping with splint on their wrists/ankles, getting 
ongoing IV’s, getting MRI’s, CT scans, xrays, joint injections, 
scopes, surgeries, shots, throwing up, in pain, with swollen 
joints, with fever, with rashes, struggling to walk, and yes…I
too see my child smile and am so thankful that through it all 
he/she finds a smile.
·         It affects every child differently.  It’s an autoimmune disease 
and can be mild to severe and chronic and can be different 
from day to day
·         It strains a marriage, couples, relationships
·         It’s hard to balance between children
·         We advocate, educate…so others will begin to understand
·         We experience many financial burdens
·         It is hard to admit that I can’t “fix it”
·         A normal life is a struggle
·         Our kids miss out on things that their friends are doing, either because 
of their health, because of treatment, or because they cannot be 
around others with a flu due to a compromised immune system
·         There are over 100 kinds of JA
·         It affects our careers/work
·         It comes out of nowhere…one day you have a healthy kid, 
then you don’t
·         Some children are old enough to understand the 
seriousness of their disease…and the young ones who don’t 
understand are also scared
·         The continual fatigue is the hardest
·         This disease steals “time” from all of us…
·         My child is losing their hair…and prior to her losing her hair, people 
didn’t realize how serious this disease can be.
·         We often hear…at least it isn’t _____...but hearing this does not 
make this disease better to families who live with it because it is 
affecting our beloved children.
·         This affects the whole family….these are our children...
It's a full on battle everyday!
And yet through it ALL…our children
·         Endure it all
·         Are incredibly brave
·         Know a lot about compassion
·         Experience the depths of love
·         Are amazing
·         Are young
·         Want validation
·         Need encouragement
·         Want a voice
·         Do know how to have fun
·         Are overcoming tremendous obstacles
·         Are thankful for each other
·         Are blessed to have incredible strength
·         Can smile
·         Have a much better chance with better drugs…but 
more research is needed
·         Are strong
·         Hope for a cure
·         Want you to tell someone…everyone…raise awareness…please…


  1. I just found your blog and have been reading through it. My 8-year-old daughter has had JA since she was 2 1/2. Joint-wise, she's doing OK right now -- she gets weekly methotrexate shots. Her last cortisone injection was last spring, in her knee. Our biggest challenge is her eyes -- she has uveitis, and it's been a constant up and down trying to keep the flares down. Now, the eye drops have caused cateracts, which she has to have removed over the coming months.

    In this list, the one that jumped out at me was "If the cure was spices, vitamins, and other crazy mixtures, all these
    children would already be cured." I can't tell you how many people suggest things to take, to eat, to not eat, etc., like it would be so easy to "cure" Maggie if she did that. It drives me crazy -- don't they think that if I could, I would do anything to help my daughter? So I always appreciate SO MUCH people who understand.

    Thank you for this blog. I'll be following it from now on!

    1. This comment has been removed by a blog administrator.