Friday, October 26, 2012

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
·         For those with severe forms of JA…kids face their own mortality…talk about dying
·         They ask us many difficult questions, some that we don’t have answers for
·         Some children talk about wanting to go to heaven so they won’t hurt anymore
·         We live in the moment, not thinking too far ahead
·         The drugs cause many side effects sometimes causing a need for more drugs
·         The alternative to not taking drugs could have grave consequences
·         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. Oh, my. This is even harder to read than the post was. Great idea, and thank you for posting this. I am going to link this post on my blog. I hate that we have to fight so hard, but I so appreciate YOU and what you do.

  2. Thanks, Rochelle and all of the families who contributed. I'm going to share this as well.

  3. excellent post--- we met you guys at the JA Conference-- my son Matthew is 14.