warning just a little soapbox

I have been trying to figure out what to write for this but I can’t seem to get my thoughts to stop swirling and zooming around in my head long enough for my fingers to even begin to know what to type.  It has been almost a month since we went to the hospital and celebrated Zach’s death.  I hesitate to even type it that way because we didn’t celebrate that Zach died we just shared with others to remind them that they weren’t alone.  We shared part of Zachary’s legacy with the hospital reminding people that they are not alone in the battle that they are facing.  For Zach’s birthday I attempted to make cupcakes… now please don’t miss hear me, I can make cute cupcakes and I even make my icing from scratch but nothing I did this year turned out right for them.  I made them as a little reminder to me (not for the people that ate them) but for me to remember all the laughter that Zach had, even though he couldn’t eat, he loved to make cupcakes and consistently did it.  It is something hard to deal with; we have Zachary’s death date, Fathers day and then his Birthday all in a two week period. 

Why do I choose to celebrate his birthday and his death date? I have been asked this followed up by the statements that seem to be so judging and hateful even if I know that they were NOT meant to be.  They were just reminders that the world that I walk in is not one that people understand.  I was asked why celebrate his birthday? He is dead! Why celebrate when he died you know that he is okay and is with God? Why cry? Why Hurt? Because after all you should be happy that he is with God and that he is stronger, healed and perfect.  Why do that and make everyone else around you remember Zachary? After all you lost him, he is dead. You shouldn’t cry because you have Aden and a family that loves you.

So here I sit I am putting my soap box on the floor and I am standing on it and screaming into the microphone… Please listen!

·        Zachary was my son and no matter where he is I will love him and miss him.  As a mother we love our children and miss them when they are not close, you can know that your child is out with friends having the time of their lives but you cannot sit there and pretend that you don’t miss them or want to be with them or even that you secretly wish that you could be a fly and watch them smile, laugh and have a good time.  You cannot tell me that as a mother you don’t love it when your child calls home, or even better yet comes home.  You long to catch up and see how things are going.  Yes, I know that he is in Heaven, I know how much of a blessing it is but I also know that since he is there he isn’t here with me.  While I am glad that he is healed and no longer subject to all that was here on earth, I also hurt.

·        Zachary’s death is something that we use to share the legacy that he left.  Zach taught many of us me how to be strong even when we don’t know how to be.  He taught me how to love. He taught me how to not judge and he taught me how to fight.  I know that he didn’t teach me all that he could have but I tell you this Many people dream of their Heroes I got to hold mine in my arms.

·        Why celebrate his birthday? To this all I can say is just because someone dies doesn’t mean that he or she never existed, if that was true then we wouldn’t celebrate our grandparents, heck we wouldn’t get national holidays off (think Washington’s birthday etc).  My Mom was very much part of this world and while she is in Heaven she had a day she was born unto this earth.  Zachary does to, while a child and not living as long as others, he was in fact still born.  Think about that next time you tell someone not to get upset on a dead loved ones birthday

·        LOST? I didn’t lose him, I wasn’t shopping at the mall and turned and he was gone.  I didn’t lay him down and can’t remember where.  I didn’t drop him out of my pocket.  Zachary is in Heaven, I know this, I know that he is blessed to be with God.  Please know while he isn’t in my daily life here, I am still very well aware of the fact that I didn’t lose him   

·        Please know that I am honored to have Adam and Aden and it is only because of them that I am alive.  I went to work every day last school year, even on the days that I rather not have.  I made sure Aden had clean clothes and lunch every day.  I tried to keep up with clothes and dishes and I tried to be a good friend.  To tell me that I need to not be upset or cry because I have them is crazy, I wake up every morning even if it is only have an hour sleep and I live that day for them.  Before you judge missing someone or being upset walk through it…loose a child, a spouse or a parent that you are close to. 

So now that I said this I would like to say this… please know that it is okay if you talk about Zachary.  It okay if you ask questions about him or even about me and how things are different.  It is okay to share good information with me like being pregnant or having a birthday. It is okay to cry because something hurts you and you don’t always have to be strong just because you think my heart needs it.  Recently I was part of a conversation talking about the health of one that I love.  I was told, I try to hold it together with you, and I shouldn’t let you see me or hear me like this as tears streamed down their face… you have been through too much.  I reached over held them and let them know their tears are not in vain, they in fact made me understand that I am not alone, that I am normal.  That while I don’t know the words to say to make things better, while I know that I can’t change that situation and while I don’t know what it feels like; The hurt, tears, and emotions well I have them of my own. 

I am sorry to get on the soap box and to even sound a tad bitter, I am not bitter but I know that it still very much hurts.  Each day it is getting a tad easier and while I often don’t have the words to express why I am sad or why I am upset, those days are becoming less frequent.  I am blessed to have good family and good friends around me that hug me and love on me when I need to.  Grief is like a wave it comes in and out on its own time schedule and sometimes the waves are high and hard and will knock you under and sometimes they are gentle and little to just make you shiver.  Each and every milestone Aden goes through is one that Zach will never go through and so that is something that we have to grieve.  Each holiday is one that we don’t get to celebrate and be with him.  It doesn’t ever just go away. My family and other families like mine need to be able to grieve without having family and friends, those that should love and support us the most  making comments and judging us

Happy Happy Birthday My little Man!

A number of years ago I was getting done with Church and I was delighted to be pregnant and having a good time, considering the complications that I had during that time being at church, dancing with Aden and hearing what God was doing with our youth was amazing.  We left church and went to have Mexican, one of my major yummy foods that I loved while pregnant, all I remember is having salsa and chips and being asked by the waiter if I wanted a straw for the salsa because I was basically drinking it.

It was month end for my husband, who at the time was an accountant for a national restaurant chain, and I knew that week was his week that he had to be at work.  We joked about it and said if I could keep out of the hospital till the 4^th that we could have fireworks and be okay with delivering our second child.  Aden went to bed and Adam went to bed and I stayed up watching TV, I couldn’t get comfortable, midnight hit and I still couldn’t get comfortable, I tell myself that if I was still hurting at 2am that I would wake Adam up.  I got in the tub and sat there trying to think of what we could do for the 4^th that would be inside because the heat was unbearable, thinking that one of my friends had her daughter on the 4^th, thinking that I have two close friends whose birthdays are the 6^th and 9^th.  I wasn’t comfortable but when 2am rolled around, I told myself that IF I could wake up Adam by simply saying his name that I would go to the hospital.  I whispered “Adam” and he woke up instantly.  I told him that we needed to go to the hospital and that we needed to call the doctor.  It wasn’t a debate, I fought having to call every time I hated being high risk and having complications I hated calling but that night I knew we needed to go and to call.  They did tell us to go and we went.

We got there and the nurse was the one that did the last couple of my visits and decided because they checked me for the UTI or dehydration that she would check me to make sure that I wasn’t in labor.  When she checked she found out that I was 9cm dilated and that she could feel the baby’s head.  The midwife was called, Adam’s mom was called and I went down to a room.  For not sleeping in over 24 hours, I had no idea that I was in labor or why I didn’t know.  Adam’s mom went to get batteries; she was gone less than 15 mins.  In those 15 mins the midwife sat down on the bed with me and I had my son Zachary Eli Moody born July 2, 2007

I didn’t know that day that my life would be changed so much, it would be a day that I think of often… what if I had known I was in labor? Would he have made it? We found out at his delivery that his cord was wrapped around his neck twice and then knotted.  If I had known and gone in to the hospital earlier they would have stopped my labor and then there is a huge chance Zachary would have never made it. 

Zachary should be turning 6 years old this year.  I wonder what he would be into, how tall he would be, how much he would weigh, if he would still have his favorite color be brown, if he would be talking.  I know that I would still get lost in his smile!  I sit here and I wonder if they throw birthday parties in Heaven or if every day is such an amazing experience that it is no longer needed.  I wonder if Zachary is in charge of cupcakes and if he is watching butterflies.  I wonder if he is being hugged by my mother and if she is able to tell him how much I love him or if Zachary is able to tell my mom how much I love her and missed her.  I wonder what would we have gotten him for his birthday and would he have been able to eat? 

I will choose today to remember that I have two boys. 

Cupcakes, butterflies, and Smiles all mean more now because of you Zachary, I miss you more than I the air I breathe and more than people understand.  Your daddy misses Daddy Time (I miss listening to yall giggle and talk) and holding you in his arms.  Your brother misses sharing a room with you.  Your MaMaw misses you being in her arms.  Your Papaw missing being able to walk with you.  We all miss you, I miss sharing you with the world, miss letting you mean those in my life that mean so much to us. 

Happy Birthday my sweet little man

Zachary Eli Moody

July 2, 2007- June 14, 2011

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.