Tuesday, May 6, 2014

Mother's Day


My dear sweet boy,

In my head you are still almost 4, however, I realized lately that you will almost be 7 years old this year.  I can’t believe it. It is almost Mother’s day.  It is almost to the anniversary of your death, the date that you were blessed to go see Jesus and be in the presence of God.  It is almost to another birthday, to your 7th one.  To almost everyone else these are just ordinary dates, ordinary boring days.  To me, thou it is a reminder that I had something that I was extremely blessed with taken from me.  I know where you are so I don’t consider myself to have lost you although lately I can’t help but wonder what did I lose?  So another Mother’s day with you in Heaven, another day with you with my mom and surrounded by the loving caring amazing God in Heaven. 

I wonder if you are celebrating in heaven with my mom…. Are there cupcakes and skittles at every meal? Have you managed to put stickers all over heaven?  Do you still have the most amazing smiles? Do you give the most amazing hugs? Are you with my mom? Can you see your brother? Can you hear all the conversations and do you take sides?  Are you sitting by Jesus asking Him to give us 5 more mins?

I wonder what you would be doing if you were still in my arms.  If you would have made it through with kindergarten with friends? Would you know your letters? Your numbers? Would you still have oxygen or TPN? Would you be wheelchair bound or would you be running marathons? Would your heart be filled with the love of those new friends that we have? 

I miss you so much but I also miss my mom… I pray today, this week, this day that you are loving on my mom in a way that she imagined as I was going up.  I pray that you can throw your arms around her and stay in her lap.  I pray that she is able to pull you close.  I pray that you are able to have moments like I did growing up.  Mom Moments that when we are young we don’t realize that they mean so much it is only when it is gone that we realize that we not only loved it but we NEED it. I miss my mom, her hugs, her love, her laughter, her care.  No One cares like your mom.

This year Mother’s day is hard for me, not all because I am missing my son, part of the reason why I am a mom but because I am missing my mom, the reason I am here.  I am blessed to have Aden, the other reason why I am a mom.  I am blessed to have an amazing Mother in Law, I am blessed to have other Woman in my life that matter.  I am blessed to have a husband that loves on me and friends that love on me.  Tears come hard and fast without reason this year.  This is I long to be in my mother’s arms, feeling her love being the only one that matters at that second. 

 

I love you mom! I love you Zach! I pray yall have skittles, a cupcake, enjoy some football and sticker some for me!!

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 (https://www.facebook.com/RememberingZachary) 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