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!

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

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 1^st 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.

a new SITE!!!

I am touched to say that God has blessed us with a friend who is amazing at graphic designing and who understands the world of being sick.  Her family is a family of four, just like us, two boys, a mom and a dad.  Just like us…. Two major differences Zachary was able to go see Jesus and all four of them have mitochondrial disease.  Yes you read that right the whole family.  It was diagnosed in a child, then the other, then the mom and then the dad.  Can you imagine?

Can you imagine? I can’t because one is overwhelming I can’t imagine all of them having this disease that has no treatment and no cure.  This disease that destroys the body at different rates, sometimes slow and sometimes so fast that you can’t blink before something happens.  What is the fear that they have?

10 months ago roughly I met the mom of this family while sitting in the lobby of the neuropsychologist.  I was sitting there with Adam and Aden.  Not paying attention to anything but Aden picking on his dad.  This lady across from me kept looking at me and then we both got the courage to talk to each other.  I found out that roughly a day before she had read my blog, my blog, I didn’t know people that I didn’t know read it.  I know silly, but we are just an ordinary family that was touched by a disease that no one understands.  A disease that is taking children far too young and causing adults to lose the abilities that they once had.

She and I were talking about something I wanted to do for Remembering Zachary and she offered the one thing that she can do… her talents and her skills.  So I am very proud to introduce to you a new site that I can take donations through if it is easier than sending a check and something that will tell more information about what we need and what we are planning to do.

Thank you Brandi for helping me with my vision, for listening to me ramble and for understanding all my rambling!

http://rememberingzachary.weebly.com

please Consider using Brandi if you need something designed for your blog, business, or anything of that nature! She is a wonderful person and I know that she would appreciate the support.  thank you again Brandi, I deeply appreciate it!

www.sissyfrissys.com

Really almost 1 year..... Really!

So yesterday I came to the conclusion that I am not sure why God has our brain work the way that it does.  I realized that in 2 weeks it will be 1 year since Zachary was blessed to be with God.  I am not sure that I am excited about it or that I am looking forward to it but a really good friend of mine told me this…. Think of it this way, you got to one year.  Remember when you didn’t think that you could make it through one sec, one hour, one day, one week, one month.  Now you have almost 12 months behind you. Thanks, that is how I am going to try to look at it!

My heart’s desire is that I use all the things that I do and all the things that I have been through to touch and impact other people in a positive manor.  That I use Zachary’s name and his honor in a way that will always be positive and uplifting sharing with others the smiles and the joy that Zachary always had.  The 1^st thing that I am doing is an event that I am praying that I can make into a yearly event, which is Remembering Zachary.  During this event it is my goal to collect as many items that we can use in the hospital to bring hope to not only the patient, the child, but to their parents and caretakers.  It is my heart’s desire that no one walks through their journey without knowing that people are praying and that they matter.    

In doing this we are collecting items for the hospital to deliver to the patients but we are also collecting food items and other things for the nurses and doctors that are serving in the PICU/TICU.  These nurses and doctors are honestly sometimes the only people that you see during your stay there.  You don’t want to leave your child and you can’t bear to so they are the ones that come into your room and make a difference.  We want to thank them, let them know that they are not alone and that we appreciate it.  Almost a year out, I still think about the doctors and the nurses and I miss them.  I remember when we were there at the hospital and I was praying that they would come and bring something to Zachary to play and do because I was bored and having trouble being stuck in a room after 10 days.  I remember when Zachary would get things that it would make him smile and laugh and it would instantly give me hope that things were okay.  I remember Zachary stickering with fairies and flowers because they didn’t have boy stickers for him, Zachary laughed and was happy.  It brought him fun and smiles and brought me hope.  I hope to bring hope and joy to all those that I can that are living the life that we lived. 

I guess I am being selfish because I want to get so much stuff, so many items that we touch EVERY patient that is there.  So in having this dream and this desire, I am asking that you consider donating items to help us accomplish this.  We were asked to do an Amazon Wish list, here is this list to help.  They have shipping and can ship it directly to me.  Here is that link: http://www.amazon.com/gp/registry/wishlist/2SG56OQNW2UK1/ref=topnav_lists_1

Here are some suggestions of things that we still need:

·        Crayons

·        Markers

·        Coloring Books

·        Notebooks

·        Journals

·        Infant toys (crib toys, stroller toys, etc)

·        Stickers

·        Bubbles

·        DVDs (rated PG or less please)

·        Board games

·        Prepackage Snacks (for parents)

I realized I was blessed beyond my wildest dreams; My goal is to bless others! Please consider helping us do this.  If you would rather send a gift card or a check, I would be more than happy to shop for you!!!

I have learned…

I have learned that in a blink of an eye things can change

·      Things get better

·      This get worse

·      Life experiences happen

·      We fall in love

·      We have our life change

·      We realize that it isn’t about us anymore

I have learned that in a blink of an eye we do things that are ordinary to everyone till you find that you or someone that you love can’t do them.  Things like

·      Going on vacation

·      Going outside

·      Going to school

·      Not having a doctor’s appointment daily

·      Having friends

·      Being able to talk

·      Giving Hugs

·      Having a favorite food

·      Eating popsicles or other candies because they have one ingredient in them

·      Being able to leave at a seconds notice to be gone as long as you want for whatever you want.

I have learned that Happy things can be hard:

·      Graduations that never happened

·      1^st days of school

·      Spelling test, math tests or any other tests

·      Riding a bike

·      Reading and Writing

·      Birthdays that didn’t occur

·      1^st boyfriends or girlfriends

·      The heat of summer

·      Playdates

I have learned that sometimes you have to slow down enough to pay attention to the real things that are going on the simple things that we think might not be the true story, things like:

·      A six year old paying for toys in the store might be because he is giving some of his graduation money to buy some toys in his brothers honor not just so he can get more things

·      A child that is having a melt down at school might be because they are missing the love of a father who has died, a brother that has died or some other loved one that isn’t available to hug them not because they are a bad child.

·      An adult might be short with you and distant because they are dealing with depression, another medical condition, grief or pain that causes them to have difficulties. It isn’t just because they don’t like people or because they don’t want to be around people, sometimes it is hard to fight through it all and still be what we think others want us to be(all of us think we must be a certain way).  They might long to feel like they matter or that they still are a friend

·      An adult might be grieving the loss of dreams… dreams of a child being what they desired or dreams of what they were going to be,  dreams of always being with the one that they loved not because they are broken but because God had better plans.

I have learned that in a moment we learn who we are, who are true friends are, and we can realize how blessed we are to be surrounded by those that care about us. 

Remembering

A while back, I don't mean months but years ago, I walked into church for the first time. I was a sophomore in high school, unsure on where I fit in if that was even something that I could accomplish and wondering what it was about. I went that Sunday morning and found out there was a youth function later that night. I wanted to go, I wanted to be involved, to have a friend. I went and I had a youth worker who took interst in me and we developed a relationship that was amazing, she opened her house to me, she helped me when I was discouraged and she believed in me. she allowed me to fuss and to develop who I was. When my mom became I'll with brain cancer she was simply amazing, she cooked at least once a Week and she visited us while she was inpatient. She somehow walked this amazing line of being friends with both a parent and a child. She made my wedding cake for me and she drove the hour or more to attend my wedding. She was amazing. Several years ago, she helped me learn the basics about cake and icing so I could make cakes for my son. Zachary was turning 1 and couldnt have any milk protein, I needed an icing to decorate. She quickly emailed me the bare basics and a recipe. I made my first cake shortly after and she praised me for the attempt. I still smile at that fish with the huge blow pop lips and the little star fish that was Zachary's alone. Why am I writing well last night I sent a simple Facebook message... Hey! To her and quickly on my screen was Hi Kiddo! All I could do was smile, it flashed me back to nights sitting at her table or days sitting in her livingroom talking and sharing. It flashed me back to her livingroom decorated for my mom's 50th birthday that se celebrated literally months before going to be with Jesus. It reminded me of why we develop relationships? We are here to encourage and to help build others up, how are you doing? Do people know that you are one that cares that will be a good support or one that they shudder to think about. For me this friend, even though I have no gotten oldere, I'm no longer in her youth group, I know I care to her.