Tuesday, June 26, 2012


Remembering Zachary… 1st I am amazed to say at last count we were at 757 children, 80 parents, and 90 staff that can be touched by the donations given to Remembering Zachary.  This doesn’t have us breaking open the 144 bracelets, the 144 tattoos, 10 bouncy balls, 15 parachute men, or other packs of items, we counted them as individual unsure what they were going to do with them, if they were going to go into bags, be used during procedures or what.  One of the most impactful things that we got to hear was that June happens to be when the hospital needed the most donations, by June all the items that were donated at Christmas are pretty much gone and they are struggling to have the items that they needed to share hope with the patients.  Thank you for helping us share the love with the children at a time that they needed it the most!!!!

We were able to spread the items to almost every floor of the hospital…. Both the PICU and TICU got items to stock their cabinets and to have reserves, the waiting room receptionist for the PICU was stocked with beanie babies, stuffed animals, and snacks to give to family and friends as they wait to go into the unit,  The 4th floor (which is the floor that was Zach’s before he got so sick and is where lots of Zach’s friends go if they don’t have to be in the unit) got lots of craft items esp. foam stickers which Zach always got lots of while on that floor.  The 4th floor nurses also got cupcakes and waters to say thank you for the care that they give.  The Rehab floor was given some items to use in therapy that desperately needed to be replaced.  In fact one item that was donated (the egg shakers) was given esp. to the music therapist that came and gave extra attention to Zach on his hard days.  I wanted to make sure that she could make others smile like she did to Zach, that she could help the parents have hope by sharing music to the children.  Even after that the office of the child life staff for the PICU/TICU and Storage Closet that was empty before this was then fully stocked with the items that they were going to need.  She was going to have to order mobiles and we stocked them with 5 that they desperately needed, we were able to provide the exact items that they needed at the moment, I can’t help but think that Zach was in on that and knew exactly what his friends needed.

Zachary was a bright star in many lives, I know that I am biased but I heard time and time again how amazing his smile was, you know they are right, his smile would make you feel better and warm your heart. While we had some tears on June 14 2012 to be able to pull up to the hospital literally with a vanful of items make some of those tears sting a tad less.  When I started Remembering Zachary I wanted to touch one more than I did last year, to take one more item than we did last year.  Last year the day after Zachary died, Adam and I showed up at the ICU and took a box of items.  I wanted to do more than that box.  Thank you for helping us realize that dream!

We are not stopping here however; we would like to make sure that they always have the items that they need for the patients and their families.  We will be doing three drives a year…

1.      Remembering Zachary: (Delivered June 14th every year unless it is on the weekend) this drive will be collecting toys, art supplies, infant crib toys, new blankets, pillowcases, etc.  This list could go on forever, this is our major event to stock the child life staff with all the items that they need and desire to pass out to the families.

2.      Back to the Hospital: (delivered end of Sept of every year) this drive is to collect items that are often on sale during the back to school times.  Items like crayons, markers, paints, paper, notebooks, glue, dry eraser markers, folders, pencils, colored pencils and sharpeners, etc.  This list can also go on forever, these items are ones that cannot be taken back once they are given to a patient or go into a patient’s room.  This means they are always in desperate need for them

3.      Stuck on Stickers: (delivered end of Feb of every year) this drive is simply what the name implies; it will be to collect stickers.  Stickers of ALL KINDS, stickers were by far Zach’s favorite and he often found himself at the hospital stickering (is that even a word) with flowers, fairies and princesses because that is all the stickers they had.  Now Zachary didn’t care but many children do.  This can be as simple as going and getting one sheet of stickers from the dollar store and putting them in an envelope so for $1.50 you can touch at least one child’s life or it can be as grand as spending 20 bucks and sending them in a flat rate box.    

Wednesday, June 13, 2012

a day I am NOT ready for!!!

I have been sitting here wondering what I would write when this day came…

Tomorrow morning, early early in the morning it will be one year in which Zachary was blessed to go see and be with Jesus.  I remember family and friends leaving one by one, slowly emptying out our house which was totally filled with people not to many hours before.  We were waiting on a friend to come, one of Zach’s special people, one that he loved and adored, while waiting we all gently and quietly climbed up into his bed.  We said prayers and gave hugs and kisses, touching him would painful to him and so the quick kisses were all we did.  Adam and I left the room and Aden curled up on the couch, I layed down in the middle of the floor to talk to a few people online and Adam curled up with Zachary.  Zachary loved his daddy time and so bowed out and let Adam have his Daddy time.... Little did we know that would be the last time Adam would have daddy time with his little Zachary.  It would be the ultimate Daddy time of ushering Zachary from his arms into the loving and perfect arms of Jesus, immediately after that important friend got to the house gave Zachary a kiss, Zachary began to have trouble breathing.  Early on June 14, 2012, Zachary’s body no longer had the ability to fight and he took his last breath.  He was having an amazing Daddy time with his heavenly father, he got to met my mother. 

The year has been one that I can honestly say has had ups and downs…. We had moments we didn’t know how we were going to make it one minute and now we are literally one year past… we took it one second at a time, we did it one moment at time, and we did it one day at a time.  So tomorrow when I don’t think that I can face a day I will look back and say I can, a year ago I didn’t think that I could do one second. 

In the year since Zachary died we have seen the impact of mitochondrial disease in the lives of our friends, experiencing two of Zachary’s friends being blessed to go to Heaven.  We have experienced two families of multiple children get a definitive diagnoses of Mito and having to start a journey that has no rhyme or reason.  We have had a friend whose son got a tube and is on a journey to make his life better than it was.  I have started a job, Adam has started master’s school, and Aden has a new school.  We have new people in our lives that never knew Zachary and only hear us talk about him.  We have new friends that never laid eyes on anything but a picture but still fell madly in love with him.  We have people that we still have to explain to daily.  I also have some people that I couldn’t have made it through this year… I am blessed to have people that care about my family.

Yet somehow I can honestly say a prayer started to grow… My Dream of making people know and honestly feel like they aren’t alone started as taking things to the hospital and my prayer being to take one item more than what we could do.  This prayer and my heart’s desire turned into Remembering Zachary.  So in the morning I will get up joined with my family and we will battle through the tears and all the pain and we will take the familiar drive to the Scottish Rite hospital.  We will be passing on the legacy of Zachary’s life… smiles, hope, and love! He cared about everyone and wanted everyone to have a cupcake!!!

Please pray for us and for everyone that has had to say goodbye before they were ready to.  Please eat a cupcake for Zachary! Please wear orange or brown, help a friend, sticker a bit, and do bubbles!!! Please let us know that we aren’t alone and that Zachary still is remembered and that we aren’t forgotten!

Zachary, We love to you! There isn’t a day that we don’t miss you and don’t desire to have you laugh, touch, or help me give medications.  I pray that you are looking down and sending butterflies to make us smile and to give us HOPE!

Friday, June 8, 2012

An unfair countdown

June 7th, 2011 is a day that we the Moody family will never forget. It is the day tht we decided with the help of of family and medical team to bring zach home for the last time. We wanted our family and friends to get to come and be with us. We wanted th rules to be our own, being able to all curl up with him in his bed, wathcing what we wanted to, not scared to take a shower, a nap or eat. We wanted both, Adam and I, to be with zach... We wanted Aden his big brother that loved and adored him but had to be separated to be with him. Home we came, on June 7th 2011 Adam, Aden and I brought our little man home to be surrounded by his grandparents and all the other loved ones that would come.

June 8th, 2011 was a day that was filled with laughter and fun, zach had races with his big brother,wore his nurse out (who was just lugging all his stuff around: tpn,d10,medications, and oxygen), he laid in the floor telling daddy which marshmallows to eat out of his cereal, he crawled into everyone's lap, he watched Elmo and Barney and did play dough. He even was able to go outside for a few minutes to play with the water table and to do bubbles. To our suprise our little boy who wore himself out didn't wear out but instead wore his big brother out. We were shocked as we put Aden to bed. We decided to spend some one on one with zach and not put him to bed quite yet.

Zach was following his daddy and all of a sudden he couldn't walk anymore so he sat down in the hall way...Adam came and joined us. We began to talk. The topic of heaven came up and so Adam and I decided that we would talk and see what he thought. Zach asked is of "buddy" could go to heaven with him? I told him yes that buddy was his friend and that he would be in heaven with him. Shocked as I watched him pick buddy up and hold him. Adam asked where Jesus was and zach pointed up. He asked "when he was going to see Jesus?" zach's reponse "after nap". We asked if mommy and daddy could go with him? He told us no we had to come later! Shocked and slightly heartbroken we wondered what to do! We hugged him, we prayed with him, zach prayed the only prayer I can remember "God, love, help, amen!" no idea but we were comforted that in Acts it says that the Holy Spirit intercedes for us. He loved us, asked for medicine for buddy because buddy was hurting and tired. We helped zach and buddy get comfy, placed them on bipap and closed the door.

Little did we know that would be the last good day with him.
Little did we know that we would need that converstation with him Little did we know that we were counting down the last days of his life
Little did we know that his body was shutting down and he knew it
Little did I know that I would miss him so much

Tuesday, June 5, 2012

a mini update

Every time I seriously start to doubt things God has a way of touching my heart and mind to let me know that He is still right here besides me. Lately I am starting to see how God’s plan is so incredibly Sweet!!!  Yes there are moments and times that seem like a lifetime that are painful, sad and yucky but even those moments are designed to work into God’s plan.  

The 1st thing that I am amazed about is how God works…. The meeting of a friend that is able to help with a mission, the ability to encourage others, and all sorts of things.  In this case I have been working on the Remembering Zachary event, something that I started just to remind myself that Zachary wasn’t forgotten.  My hopes were to get one more item than what we were going to be able to do… Well I can honestly say that God has blessed this more than I could ever have imagined.  We have collected a number of items and I am delighted to be able to take them to the hospital and touch lives.  However I am learning this was also for another reason, this was for me to be an encouragement to others. 

I have met two separate ladies who are walking a road that can be hard and lonely.  One of them is walking and learning about herself as an adult having mito, I can’t imagine living your life and then one day finding out that you have mito.  I am sure that it explains quite a bit but then I am sure that it can open up some emotions that you don’t know how to express.  Wondering how to express it to everyone and living with a disease that is invisible to most but that is one that impacts every single part of your life.  Through email, we have chatted a lot and it is my desire that she knows that she is never alone!

Then the other is a grandmother of a precious child that was blessed to go see Jesus.  This relationship in itself is special because her grandchild was born on the day that Zach lost his life, living less than a year but making a HUGE impact.  She wanted to honor the birth of her Grandchild by honoring the death of Zach.  She wanted to spoil and bless the children that are in the hospital as she would have spoiled her grandchild.  What an AMAZING thing!!!!

Thank you for all that everyone has been doing, praying, sending money, sending items and letting others know about the events.  I deeply appreciate it and am honored!  This is something that I hope to do every year as Zachary will always be close to me. I now have a website up and running which is  www.rememberingzachary.org  It will be opened to donations and will let you know what I am planning next.  I am very thankful for my friend who designed it for me and who is helping me learn what I am doing.   If you need graphic designing please look her up and consider using her, she is an amazing woman her web address is www.sissyfrissys.com and you can find her on facebook as well

Please pray for us as we decide what we are going to do.  We have several more things in mind and are praying about what direction we need to take.  I want to make sure that no one feels alone.