What I didn't know

It has been a long time since I have been able to sit down and write… my life is far busier now than it was at the beginning of August.  Teaching 22 students can do this to you.  I love it and I am thankful everyday that God has blessed me to be able to do this now.  I am also in a place where I have to question God’s plan… not God! I know that God loves me and is there.  I don’t doubt that the promises that I know are true.  However, I question the plan, why are things happening? What am I supposed to learn? Who am I supposed to help? When will it ever end?

In 2001, my mother died of Glioblastoma multiforme or GBM( Read here for some more information) www.abta.org/understanding-brain-tumors/types-of-tumors/glioblastoma.html) When we received her diagnoses it was a whirlwind of emotions.  Past events that we couldn’t explain what happened all of a sudden had a reason, my mother had a grapefruit sized tumor in her brain.  We had no real warnings though, nothing that could be considered abnormal.  She had been tired but hey, you work 10 hour days at the hospital on your feet and you are tired too.  She had one seizure but it was contributed to her diabetes and a low blood sugar at the time.  We found out when my mother had emergency gallbladder surgery.  They put her to sleep and when it was time for her to wake up she woke up but she wasn’t the same person, she couldn’t stay awake and had trouble doing things that we knew she could do.  After a scan the tumor was found.  She was given 3 months to live!  My mother was a fighter and she fought for herself but she also fought for me, she wanted to see me graduate from college and get married to my boyfriend (which she adored).  She fought… chemo wafers (which were experimental at the time), surgeries, chemo and radiation.  She managed to fight and see me graduate and lived 364 days after her diagnoses. 

I remember the pain after her diagnoses; we had no warning no clue and had to live daily knowing that she was not going to make it.  I remember the pain after she died, calling people and telling them, randomly seeing people out and having to give them the news.  I remember people thinking that it was over and no longer coming around to support.  I remember hurting wishing that she was right there with me to face my life! I remember wishing that she was there to tell that I was engaged and to be there at my wedding. What I didn’t know then was it wouldn’t be the last time that I felt the pain.

See my family wasn’t new to brain tumors, however, the tumors that my grandmother had were different.  She had meningiomas (read here for more information  www.abta.org/understanding-brain-tumors/types-of-tumors/meningioma.html), she had them my whole life and she fought.  She fought for her children and she fought for her grandchildren.  She fought and lost her vision, her smell, and her taste.  She fought to make it to my college graduation, my wedding and although she didn’t remember it she held my first born child.  She fought even when one of her daughters (my mother) was diagnosed with brain cancer.

I remember the pain I felt after realizing that her time was drawing close that she would soon go join my mother in heaven and that I would no longer have her here.  I remember the pain of not knowing what to say and the pain of realizing that I would never go back to her house.  For her funeral I packed up my infant son and stayed in her house with him.  I remember that pain. What I didn’t know then was that it wouldn’t be the last time I felt that pain.

Several years passed and I had an amazing son and then God blessed us with another son.  It was shortly after his birth that we met most of the people reading this blog when our son was diagnosed with medical conditions.  He fought hard; he fought because as a child laughing, playing and living is what you know.  He smiled because he knew no difference and smiled to help us in our journey.  We (Adam, myself, and our families) fought to give him the best quality of life.  We fought to get him all the experiences that he wanted and all the ones that we felt like he needed.  We fought for school, we fought for the school bus, we fought for church, and we fought for the things that he needed to have the best quality of life.  We had many people come beside us and walk with us.  Then at almost 2 years old we got the final life defining diagnoses, our son had Mitochondrial (mito) disease (read here for more information www.mitochondrialdiseases.org/mitochondrial-disease/).  He fought with pumps, vents, medications, hospital stays, oxygen, and everything else but he fought the best fight that he could have fought but he lost his life roughly two weeks shy of his 4^th birthday

I remember the pain of having to make decisions that no parent should have to or wants to make.  I remember the pain of having people tell us that we were doing things wrong.  I remember the pain of having to call and tell people that we were back in the hospital.  I remember the pain of having my older son not invited to birthday parties or play dates because of his brother.  I remember the pain of having to prove that it was time to go home and to stop fighting.  I remember the pain of having an almost 4 year old tell me that he was done fighting, wanted to go home, and that he would meet Jesus soon.  I remember the pain of relationships changing.  What I didn’t know was that it wouldn’t be the last time I felt that pain.

Zachary died June 14, 2011… since then life has changed a lot! A new best friend, new friends, a new job, a new life!  The pain would creep up in my daily life and I would have to remind myself that my mother, grandmother and my son would always be in my heart and that I would never forget them.  I promised myself that I would strive to make sure that no person would ever feel alone or isolated when they are going through an event that touches them.  I have been to a number of funerals where I knew I didn’t have the words but that the act of being there was all that I was supposed to do.  I have been to doctor’s appointments where I knew that I couldn’t help but was there to hold a hand.  I have been on the other end of a facebook chat, at all hours of the day and night, where I know I am just there to let them talk.  No one should ever have to feel alone.  I have been in situations where all I know is that I am here to listen and to allow the person to vent.  To let them know that I can’t judge their emotions or their actions but that I will love them no matter.

I have come face to face with this again lately… in my family and in my circle of friends.  It reminds me of all the pain and all of the emotions that come along with having someone you love be sick.  The lost feeling, the hurt, the anger, the not knowing what to do or where to turn when it feels like the walls are crashing down.  Then I remember I am not alone!

Why am I writing this? As I type this I know of one family member fighting two different types of brain tumors and her family that is standing beside her; fighting with her.  I know of one spouse who is helping her husband fight an illness that at any day could become terminal.  I know multiple families that are fighting mito.  I know multiple families with children that are struggling to find something the child can eat.  Just to name a few!

I didn’t know through each of my personal situations that it wouldn’t be last time I felt the way I did.  I didn’t know that I would feel the emotions again, however, God’s plan say otherwise, I would certainly feel the pain again.  So I am learning even still that you love those that are in your life.  Love your spouses, significant others, parents, children, aunts, uncles, grandparents, best friends, friends.  You love, give your best to them because you never know if you are helping them fight!

just a little note!

So I keep getting asked where my blog has been… why there hasn’t been an update or why I haven’t written lately… well the honest truth is that life has been unpredictable and busy. So here is a mini update for those that are curious and that are wondering.

It is SCHOOL time here in my area.  Aden has started a new school and it is far more amazing for him than we could ever have imagined, they are still assessing and doing lots of overview but he loves it.  His teacher is an amazing woman who retired from the public school system and honestly is an amazing well seasoned teacher.  Exactly what I have been praying for him, a teacher that will be sweet and loving but that will push him and kick his hiney into high gear if needed.  This he has and he respects her.  I am overwhelmed by all of the things that kinda just fell into place with this school and the emotions that we have with it.  We are very excited to be starting this school year and yes I know it is only 4 days into school but Aden is still waking up every morning eager to go to school.  This was the 1^st year since he started preschool that I didn’t get to be part of the 1^st day of school drop off, well to be honest, I don’t get to drop him off this year 99% of the time, this is very different for me but I am excited that his daddy gets this time and that my son is seeing that Daddy’s do more than just work.  It has been amazing to see them in the morning talking and getting breakfast.

My big news that I accepted a job well let me rephrase that... I got a job, then after a day of being there I got warned that I might get a different job and then I got a different job.  I am now teacher Ga Pre-K and I love it… now it is harder than I imagined for me, I have a ton of things that I am learning and honestly I am still very much confused.  I am trying to get it to a routine that makes sense to me… but I have 22 new loves of my life that love to get tickle hugs and tell me all the things that they do.  I went through a lot to get this job, since my B.S. is not in education; I had to go through the state to get approved.  I found out that yes I was approved to be a lead teacher and I was able to keep the class. 

So life is a changing as I like to say.  We are getting used to things… we have a new school, a new job and 2 new routines so if you count our family together as a whole we have 3 schools, 3 routines and 2 jobs!

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.