Many of you who are JA family members already know this amazing woman. For those of you who don’t-Tory Aquino is the mom of two outstanding daughters, Mauriauna and Mariah. Mariah has Spondyloarthrits (like ME!) and their family has been mega-involved in activities within the Arthritis Foundation for years. Every season, holiday, etc. Tory makes Facebook pictures for all JA kids with a tagline related to the season/holiday/etc. As our “Diagnosis Day” (October 11th) approaches, these very same thoughts run through my mind, so I thought Tory’s post was MORE than worth sharing with the world via Rheumatology Mommy. The image alone brings tears to my eyes. I’ll never forget our Diagnosis Day. Enjoy!
Every year this day passes and makes me reflect on how far we have come.
Today is our diagnosis day. On this day in 2011 we walked out of the Children’s Hospital with a diagnosis we couldn’t even pronounce.
Part of me was so excited we had a diagnosis and could start a treatment. But the other part of me was terrified. To hear that your child is diagnosed with an incurable disease is soul shaking. We have all these expectations for our children. And this is not part of our plan. So many questions left unanswered. So many fears just floated through my brain.
At that point my questions included but were not limited to…
Will my child be able to walk again?
Will she be bound to a wheelchair?
Will she ever sleep again?
What side effects occur with these medications?
I did everything I could to keep it together until we got home. And I remember running into the bathroom and crying behind the door. And in my tears I remember thinking, “I have to get my stuff together! I am the model of how she will handle this disease now and in her future!” So, I wiped my tears and decided WE WILL DO EVERYTHING WE CAN TO MAKE A DIFFERENCE FOR OUR FAMILY AND EVERY OTHER FAMILY DEALING WITH CHRONIC ILLNESS. And that’s when we decided to not let this disease dictate our life or our future. That is when we reached out to the Arthritis Foundation and got connected. One step at a time that is when we decided to start fundraising for the Walk To Cure Arthritis. Then we started attending the Juvenile Arthritis Conferences, going to the Advocacy Summits, and so much more.
If you feel alone in this disease, visit arthritis.org and get connected. Even if fundraising, advocacy or conferences aren’t your thing, sign up and get some tools to better equip you and your family. Do not become a victim to this disease or feel alone in your journey. We are here to help.
Things you can sign up for:
Walk to Cure Arthritis
Jingle Bell Run
JA Family Day
And so much more.
I need to say getting connected with other families who understand us has been the biggest blessing to us. It makes the emotions associated with this disease much more manageable when you have people to support you, understand you and carry you along.
So today, seven years into this diagnosis I would say we are blessed and so grateful for the support, opportunities and family we have found through this disease. We have hope that one day there will be a cure.
Do you remember your moment?
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