Sunday, January 20, 2013

There are so many organizations we could support.  Really, I think, split between just my kids we could support as many as 25 organizations.  How do you choose between them?  How do I pick one condition over another?  Each diagnosis for each child is such a life/game changer.


I remember when we went to one of our first "Cancer" walks.  Nettie was very interested in it and wanted to know if they had one for AIDS.  I told her they do. . . "Well, then why don't we do that walk?"  That was a breath stealer.  I guess I was worried that people would connect the dots and then Nettie's little secret would be out.  However, no one told her it was a secret.  No one thought she'd ever understand enough to know what her diagnosis meant, let alone garner support for it!  A year later, Nettie began sharing her diagnosis with random people in her life.  Yes, it created chaos for a bit while people were educated and those who really cared about her learned how it really meant absolutely nothing to them and only affected Nettie. . . and at this time, only in the fact she has to take her meds.  She is a beautiful and determined and extremely healthy young woman.  Her major issues are related to the damage the virus did to her brain when they didn't have any treatment for children back in the early 90's.  Her hips, knees and shoulders are all a mess due to the CP and severe stiffness the brain damage inflicted.  But, health wise. . . she beats the rest of us hands down!!  She has done the AIDS walk now for the past 5 years.  This year, we're joining her.  This year, the kids will hear about why we are there, to support Annette. 


Joshua has no memory of life before cancer.  He was only 30 months old when the massive tumor taking over his brain was finally found.  He never questioned the process or the tubes or the meds, as he had witnessed Annette with all of the above many times. He assumed it was the same.  The fact that her hair didn't fall out and his did. . . never crossed his mind.  We lived inpatient for 7 months.  We went home exactly 4 times in 7 months and each trip home resulted in a readmission less than 24 hours later due to high fevers.  At the end of 7 months we went home for 3 glorious weeks as he grew stronger to prepare for his stem cell transplant and subsequent radiation.  I find myself drawn to organizations that support Pediatric Cancer, as I see it so much more due to the need to go to the hem/onc clinic.  Plus, the fact that his current medical issues are all a direct result of his cancer treatment, is constant reminder.  The fact that I follow many children on Caringbridge and in real life who are battling cancer.  But we support from the periphery.  I am so busy, that at this time, to do more would be too much.  Add to that, the fact that Joshua never sees himself as a cancer survivor.  So we cheer from the sidelines for those brave enough to shave their heads in the honor of amazing children and those that walk to raise money to find a cure the government clearly has no interest in providing funding too.   

Pediatric Mental Health, this probably affects our life more than any other, yet it is sadly the one diagnosis you rarely see any cute little ribbons or posters or facebook tokens supporting this cause.  There are no walks to raise money to help families who's kids are struggling with very real medical issues but are sequestered to the sidelines like it's a type of leprosy.  There is a walk to remember those who died as a result of suicide. . . what if we had a walk to support those BEFORE they see no other alternative in life other than to die.  60% of children with bipolar will attempt to commit suicide.  Their precious brains can't see through the fog of depression and of that 60%,  almost 50% will succeed.  Really????  This is what my baby girl is facing.  This is an area that I would love to garner more support for.  Wave my banner and say let’s get this going.  But, then my little girl will be the poster child for a profoundly broken system that few have any interest in fixing.  Few if any even understand what the mental health (as if it's any different than any other type of health.. . it's all physical/chemical/organic/REAL) system is like. Imagine you have a broken foot, it hurts, and it’s causing you to be highly agitated, irritable, and can't think straight due to the pain.  You go to the hospital, but they're busy and don't have time for broken feet right now.  They put you in a room with a 1:1 aide should you try "attacking" someone to help you or to find meds to help the pain.  You finally get to see a doctor who has never seen you before and without any tests and only a few questions, the diagnosis of "broken toe" is made.  But wait. . . it's a broken FOOT.  It's bigger than a simple toe.  You need a cast but instead they just put a Band-Aid on it, a few pain pills and send you one your way while your parents watch you suffer and it just eats them up inside.  You are sent to school in this pain and are expected to function yet the issue has never been addressed.  That's an example of how our system works.  It's terrible. 

 My son, Trayvon, is coming up on his one year heart transplant anniversary!  It also falls during Congenital Heart Defect week, wonderfully coincidental!  I am blessed to have a good friend who has established a wonderful local support group for families diagnosed with heart defects.  As such, I am able to support the cause by sharing facebook pages and token posters to show both support and spread awareness.  I have never been to an event.  We could easily support the GIFT of LIFE organ donation program.  I just don't have the energy.  I would like to think in my future I will be able to do more for these programs, as they really are invaluable to those families who find themselves facing these new giants in life. 


Our youngest's life has been profoundly affected by an undiagnosed mitochondrial defect.  There are some amazing organizations out there helping families facing these complicated and frustrating and life shortening illnesses.  We could support the many organizations that support families with g-tubes or are TPN dependent.  So many possibilities, in just one child.    

We were honored and incredibly humbled by the support from so many other organizations that I wish I had time to do more for.

We been on trips from Make A Wish and Starlight Foundation.  We were supported through various charities that help families make ends meet.  We were blessed by incredible friends who put together a benefit for Joshua 15 years ago and another for Tray 2 years ago.  We wish we could do more to promote adoption and disability awareness. We wish there was more awareness and support for Pediatric Epilepsy and the toll it exacts on the child and family.  We commend the many disability related organizations that bring attention to those with Cerebral Palsy and Developmental Disabilities and Autism (all of which we have here and contend with daily).   Elmcrest Children’s Center and Casey’s Place are amazing organizations.  So many.  Please, if YOU have the time, energy, or even the ability to donate money, please do so.  Facebook me, call me, e-mail me, text me.  I’ll point you the way to a wonderful organization that could use your help.  Some are small and still amazing.  Some are huge and though they work great works, the little guys need more. 

 To all those that have supported us and to those who are passionate about an organization, I commend you and support you!!  I’m so happy there are those that do have the time and energy to educate the world. 

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