Friday, May 2, 2014

Remembering Zachary

Remembering Zachary and Why we do it!!!
I was blessed to at one point be part of the Scottish Rite (CHOA) family in Georgia, I was blessed at one point to be part of the medical world.  I was blessed by having a wonderful and amazing Family.  My son Zachary was the reason why I was blessed to be in the medical world.  Zachary had Mitochondrial disease but mitochondrial disease did NOT have him. Mitochondrial disease effects the mitochondria of the cells.  Every cell of your body no matter who you are have a mitochondria, however, those that have mito have issues with energy production which is what the mitochondria do.  This means every part of the body can be impacted.  Mito looks different in every person that has it and while Zachary was blessed to not have seizures and to be able to walk at times... There is NO treatment and NO cure, which research is hopeful that one day there may be a treatment for Zachary there was no treatment and no cure.   There were times that his body had to decide if it should breath or hold his head up, if it should breath or walk.   His body was tired a lot and so we spent time in the TICU and PICU a lot due to mito crashes but also to infections because his body couldn't make enough energy to fight them off. He had trouble gaining weight and had difficultly growing; at the time of Zach's death he weighed less than most 1 year olds do.  Zachary had lots of tubes and medical equipment throughout his whole life.  During his time at the hospital the hospital staff loved on Zach and often my face of HOPE. 
June 14, 2011 after being home less than a week Zachary was blessed to go to heaven and we were left wondering what to do.  We had been given lots of the things that Zachary loved to do but yet he never got to touch it.  On June 15, 2011 we made our way hurt and devastated to see Zach's Favorite Child Life person Lauren with a box of things we wanted to pass on... Barney movies (which was his favorite), Stickers (which was his favorite), coloring books, playdough and a slew of other things.  They were shocked to see us already and truthfully it was hard but we wanted to make a difference.  To pass on the things that were given to Zachary but he never got to enjoy.  To share Zach's legacy
It started with one box of items and that box was to share the love that our son was and to hopefully spread hope.  In my heart, I prayed that it would be a smile and that smile would in return be the glimmer of hope that I so needed when I was isolated in the hospital.    Each year I pray that we can collect more than that one box of items in order to pass it on to those that are still living the life that often can be hard and isolating. 
We are starting this process now... we hope to have more than the past couple years. There are a number of things on the list and I am letting people know early so we can try to collect as many as possible. Some of the items are going to seem a tad odd and some are going to seem like a given.  To those that have followed us on facebook ( in the past thank you!!!! If you are new to this journey please go and like us and help us share the Remembering Zachary. Help us touch as Many people as we possibly can. Following is a list of ideas or items that have been asked for that can help.   Please know that anything helps and even if you can only do one item that is still one child that can be touched.
Items Needed:
  • Items for parent bags
      • Wrapped Protein snacks
      • Wrapped  Sweet snacks
      • drink mixes
  • Items for Staff Appreciation
      • Wrapped Snacks of all kinds
      • Wrapped Chocolate and other candy
      • Drink mixes  
  • Stickers
  • One piece Infant toys
  • Plastic Crib Mobiles (5-10, they must be able to be wiped down and sanitized)
  • Playdough and playdough toys
  • DVDs for all ages
  • Games for all ages
  • Puzzles for all ages
  • Journals
  • Barbies
  • Hotwheels
  • Legos
  • Tattoos
  • Coloring Books
  • New Books
  • Anything Crayola
  • iTunes gift cards 
  • musical instruments (like egg shakers, small drums, small tambourines)
  • homemade pillowcases or new pillowcases
Please contact me if you have questions or if need to meet up with me. 
I will also be happy to give you my address to ship items and if you would like to send a gift card or a check I will be more than happy to go shopping for you.  You can do site to store as well and I will be happy to pick up just please tell me what location you sent to.  Under each the closest will be listed 1st.
Site to Store Ideas:
  • Walmart- Lovejoy
      • Walmart- Hudson Bridge
      • Walmart- Fayetteville
      • Walmart- Griffin
  • Target- Fayetteville
      • Target- Jonesboro Road/McDonough

1 comment:

  1. This is AWESOME. I love what you are doing. Thank you so much! (from a mom who has spent much time at SR) :)