Well

Well today is the 14th, I went to bed late last night and am up early this morning.  In the past year two years life has changed. While we are still a family of 4, only three of us come in and out of our doors.  Aden has gotten big enough to have his friends come in and out.  Our house is full all sorts of noises and laughter.  We have new friends.  We are stricken with bouts of sadness, missing and not understanding at times. 

In having new friends I am sometimes reminded on how amazing zach was... People seemed to be scared of him, he never really had a friend other than his brother.  we have worked hard to explain to others and to support them in all situations. One days like today I am quickly reminded that zach went through his medical situation to help us understand how help and love on others.

This is going to be short, I just don't have it in me today to type a long flowing message... but I do want to remind you to love the ones that you are with and the ones that mean something with you.  It isn't about what the world sees but what they feel.  Know that at the end of the day when all the lights are out and the world is quiet that in that moment you realize what is important.  It isn't the money or the items but the relationships, the things that you do and the fun you have.  LOVE those around you even when the world thinks its weird, you never know what a smile, hug or kind word does. 

I am signing off not paying much attention to facebook today... Thank you on behalf of the Moody family for remembering Zachary and the amazing boy he was!

Dear Zachary ...

To my baby boy,
I know that you are in a better place, I know you are with my mom and that you are able to do so much that you couldn't do here on earth.  I'm sure you are surrounded by so many that you enjoy. I know you have no tubes... No feeding tubes, no oxygen, no pumps, no medications, no hospital visits, no medical tests, no blood transfusions.  I am sure that you are in charge of cupcakes in heaven, I bet it is one big party everyday, celebrating all the things that we take for granted.  I wonder if there are butterflies and how many you have land on you hand.

We miss you every day... You brother has become a funny amazing young man.  He thinks of you often and wonders why his friends don't get to met his awesome brother.  I pray that you are looking down at him protecting him and his friends.  He often wonders if you are stickering in heaven.  I like to think that you are.   Your daddy misses you, working hard everyday with a new company and is almost finished with his masters.  He passed his CPA testing, his dream of having this is almost done, while it was started for you, he is finishing it for him. He often thinks of "daddy time" you know tht he does daddy time with Aden now.  Both of them look forward to it every night.  You taught us a lot. Your mamaw, papaw, and uncle think of you a lot and often think about you and all you went through.

Then there is me, your mom.  I love you Zachary and I am a much better person now than I ever was.  You taught me how to love and how to care.  You showed me what being strong was, I often wish I could have a ounce of you.  An ounce of your strength, your smile, your love... An ounce of your ability to make a difference.  I learned that I'm not called to walk alone but that I am passionate about making sure others don't feel alone.

We are collecting items to take to the hospital that you were often in.  The hospital that you called your second home.  I can look out while I am typing and I can see a living room of items... Water, foods, crayons, coloring books, games, toys, etc.  we are striving to share your love.

I sit here trying to sleep, I miss you, I miss you lots, I pray that I never forget you and that you are remembered

All my love to you,
Mom

Thankful..

This morning I was woken up by a text of a good friend.  It was unexpected and wonderful...it wasn't anything big but more of a reminder that I was supposed to be in their life.  It was a reminder that I have lots of things to be thankful for.

- I am thankful for each new day, that the mistakes that I made even if I can't change them that I can start each day knowin I get another chance
- I'm thankful for my husband who is willing to go to work each day and do the things needed for us to have a wonderful life
- I'm thankful that I have Aden... He brings joy into my life and entertainment.  He knows how to make me laugh even if it is by busting a move
- I am thankful for extended family.  They have always been willing to do everything and anything we have asked for
- I am thankful for friends that are like family that will do all the things that you want to do but all the things that you don't want to do.  They are willing to push you to be the best person that you can be.
- I am thankful for my pastor who can make me laugh and remind me even in dark situations that God is there and that there is joy in the morning.
- I am thankful for church friends who have been a great sense of support

Now I had all those no matter the situations...through zach's life and now.
Going through Zach's  life and death I have learned more
- I have learned that stickers make me happy
- I have learned that glitter makes me happy, oh do I like glitter
- I have learned that sometimes things matter that no one understands, I love butterflies! For several reasons but one of the is the hope tht they represent
- I have learned friendships are sparked by the oddest things and that you can have people around you that get it
- I have learned that I am stronger than I think

Today I will see the joy, I will try to walk tall even if it means using the sleeves of my family and friends to wipe the tears.

4 days...

I went from 8 days to 4 days... I have opened the page to type on the iPad and closed it again.  I have opened it on the desktop and closed it again.  I have drafts saved just in case I thought that I could get back to it.  I opened the iPad again and here I am, typing othe iPad means my typing is sketchy.

I have had a great week filled with friends and family.  No one really speaking of the 14th but it sometimes feels like an elephant in the room, not just a little baby gray one but a huge purple, lime green and hot pink one with orange polka dots.  People not wanting to say anything but just supporting and people acting like things never happend.  I was great happy and wonderful, then realized that I am sitting in my living room.  Sitting here wondering what my little Boy would look like, if he would have new words, if he would still love cupcakes and stickers so much.  I realized that my emotions are for the world to see, try to give advice and to deal with.  They are by far my emotions that no one can change.

Tonight I'm a tad jaded I guess, I see commercials and shows about cancer and it makes me want to scream, cancer isn't the only thing that kills.  How about the diseases that do not have a treatment or a cure?  What about the ones that take lives long before they should be old enough to worry about things?  How about diseases that a common cold can make them so sick that they die? How about those that can't eat food because their bodies think that it is something that is attacking them?  How about the diseases that your bodies have decide if it can breathe or hold your head up?

Now please forgive me cancer is important.. I have friends fighting breast cancer and my mom lost her battle to brain cancer.  I know that cancer sucks and destroys.  I just think if thre is no treatment and no cure why does no one know about mitochondrial disease? Why isn't anyone trying to find a treatment?  Yes a cure would be great but a treatment to know that you are trying to treat it would be nice.  Why did we fight so hard and yet zach lost his battle with mito.  Zach had mito but mito didn't have him... I remind myself of this a lot.

See I'm now almost two years past his death, 4 days in fact, the rest of the world is moving and carrying on.  I would say most have forgotten. I have plenty that don't even know that I have two children, much less who zach is.  I still remember bringing zach home, having a party, having love ones hold him, having special people drop by and love on him.  I remember the influx of people that we had and for a short period of time the huge support we had.  Then I also remember turning off the machine, making phone calls, picking songs, asking people to carry my son, motorcycle escorts.  Trying to figure out what to put at a graveside of a boy, what flowers are right? There are none, it isn't natural to buy flowers for your almost 4year old son.  Buying a present for a birthday yes, buying flowers for his grave or making an arrangement no!

So in 4 days  we will take a second a day to remember Zachary.  Those that knew him or knew of him will remember what he loved, his smile and the battle he fought.  We will walk during that day tall... I carried my hero in my arms.  I walked beside him and learned what it means to fight, to give life every bit of love and joy you have.  I learned what it meant to touch every person I came in contact with.    Truth is there is not a day that I don't.  I cant simply put his things away.  I can't simply stop thinking of him.  I will always be reminded of him and he will always be my son.  Truth is in four days the pain, sorrow and thoughts tht most reading this will have are just a fraction of what his daddy, brother, papaw, mamaw, uncle and I face on daily basis.

8 days...

In 2011 after a ton of struggling and praying we had to make one of the hardest decisions I think that we ever had to make… we went to the hospital to a meeting that had more people than it did chairs.  We talked, teared up and even got mad but at the end of it we were told that yes we can do what we felt was right.  The next day we walked out of the hospital with Zach for the last time.  When I say we walked out, Zachary took my hand and walked with me, it was one of the only times that he ever walked out of the hospital from the TICU to the car, it was a long walk and it tired him out but I think that he knew and he wanted to see and talk to people on the way home.  He did greet lots of people that day, his smile that radiated and his little body which was so cute, he always had people saying hi.  That day he was hugging and smiling back.

The hospital that had become a second home had become hard for us to be at.  The hospital staff that had grown to love and care for Zach had tears of hurt and pain that Zachary was fighting so hard.  They had hoped that we were wrong that what we were doing would be the wrong answer.  In our heart, we knew that we were doing the best thing for our little boy.

We called our family and our close friends and told them… we are coming home and we need to be prepared for this to be the last time.  A party was planned by some wonderful ladies at our church; they came and did it all.  They made sure the house was clean, they did food, and they invited people.  We wanted a birthday party for him.  Zach deserved that birthday party.  A friend commissioned another friend to make a cake to represent and honor Zachary and she did an AMAZING job.  Family pictures were scheduled so we would have one last picture of all of us together.  Family came in to spend the day with us and to be in our home.

We savored our time, I dealt with people not understanding, I was told by a nurse that I was giving up that as a mom I should continue to fight that I hadn’t done enough to help my son.  I promptly told her thank you for all you did but you must leave now and you aren’t welcomed anymore.  We had fought for Zachary; we had done all we could do.  His body was tired, He was tired… He told us “I no go back”  He was done, We wanted to love on him and laugh with him for however long we had  him back at home.

You know I always have a this is why I am writing thought… today it is simply this: Please take each day with your family and love on them.  Tell them that you love them, show them that you love them, and walk with them.  Hug, laugh, kiss and be with them.  Be a good friend, if you say you are going to be there, then be there, not just in a text but in whatever they need you to do.  Don't judge what they are doing instead love and support.  Try to learn to accept the help of friends, you may need it more than you can ever realize.  See I couldn’t have made it through Zachary’s life without people but I can’t make it through today without people either. 

June ALREADY

So it we have 20 mins till it is time for the date to change again.  It will become June 2nd, it doesn't seem possible that it is June again.  As June 14th draws closer I instantly think of all the things that we went through that the rest of the world doesn't know. Most of it because zach being so sick caused them to run the other way.

Why am I typing about this because I had a converstation with another mom recently... She was confessing some of the dark, horrible, guilty emotions that special needs moms have but even more those that have had a child die feel.   When I look back I have had the same converstation with multiple parents both moms and dads, it is something that each one of us bury and hide. We feel like we are the only ones that feel the same way we feel?

I firmly believe that by being blessed with Zach's life I was given a mission.. That mission is that no person ever feels like they are alone.  I had people around me but I never felt like I had a network of people that knew the emotional roller coaster that we were on.  Because of this I reach out more now than ever trying to make sure that people know I am here to talk, cry or vent.  That I can be reached by Facebook, text, email or however they need. 

So as June 1st closes and I know most that read this blog don't have a clue of the emotions that my family is facing I would like to spill a little...

- each person each family that goes through things have different emotions about what we are going through.  In a case like ours, we knew zach was sick.  We knew that we one day would lose him to his disease.   We, however, we were NOT expected for it to be so soon.  We didn't expect him to die before his 4th birthday. Many other families live through knowing that one day it would happen but are blindsided when it happens, we live in disbelief that we can't just go to their room and hug our child. Live longing to hear their voice and to hear their laughter


-we often have emotions that we are embarassed about surrounding the hours before and after their death.  We get physically ill and have to leave the room, we have emotional breakdowns, we can't function properly.  We don't eat, sleep, bathe or do anything that the rest of the world feels like we should.  One mom got physically and violently ill so she refused to go near her son the night he died.  One mom said she told the doctors to stop treatment, to stop CPR. One mom asked her husband to be with her son because she didn't want to lay in bed with him another night.  One mom asked God, begged God for it to end, never realizing that for it to end it meant that she would give the biggest sacrifice...his life! We get embarassed and hide our emotions because we are scared of being judged of being the only one that felt that way.  Reality is we are not alone, if we are honest, we all have those emotions

- please remember this is not over for us, just because another year has gone it doesn't mean that we miss him any less.  He is still our baby and we are reminded all of the things that we went through.  Decisions no one wants to make, friendships that ended, how life changed.  Wondering what we would be doing if our child was alive, what would life look like, what would they be into, what would they look like.  We are reminded daily that our lives are missing an amazing life

- please remember that each milestone that you can possibly think about is going to bring tears or thoughts that you can't erase by saying "he is in heaven and is ok". I have spent a while now trying to be okay tht my little baby will never graduate from kindergarten, yes I know he isn't hurting but I am reminded by the world he isnt here. However, I also know that I will have another milestone that will hurt.  Last year it was Aden realizing that his new friends didn't believe that he wasn't an only child.  How does a 7 year old prove that he has a brother in heaven? Have you ever had to do that?

It is now June 2nd and I realize while the rest of the world zips by and kept moving, while they are not effected by Zach's death, my household remembers Zachary.   My household remembers his love, his amazing attitude.  We remember how we felt, how sick he was, we remember how his life started going downhill and when our reality changed forever. We remember him fighting till the end.  We will remember how amazing Zachary was, his smile, his life, his stickers and his cupcakes.