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.

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.

New?..

New...instantly when I think of new I think of the overwhelmed feeling that you get when you are not sure exactly what to do.  I think of sitting down and learning new things.  I think of exposing people to things that they might not know how to accept or handle.  I think of changing things.

When zach was 3months old he got his ng tube and then at 11 months he got his gtube, when we got his tube it came with lots of newness and lots of fears.  I worried if I was doing it right, if I would be good enough, if i would understand it.  I wondered if he would ever be accepted by others.  I wondered if oeople would think thar I messed up.  However, time went on and the newness wore off and I learned quickly what Zachary was.... He was an amazing little boy who was full  of smiles and love, that everyone seemed to fall in love with.   I didn't forget about the pumps, tubes, doctors appointments, medications, and hospitalizations but I realized that he was simply and honestly AMAZING!

All of this came to mind as I am receiving an insulin pump, my blood sugars have been high and in need of further actions.  I have had to fight through medical issues that I never thought that I would have to go through and basically learn a new normal.  I have had to think about how to do things with other people near me, if they would still want to be friends with me, if I would be treated the same.  I have had to think about what the next steps would be for me,

While getting my pump ordered  I was asked what color I wanted, I knew but I wanted to see what all the had.. The colors where clear, royal purple, pepsi can blue, smoke and pink.  Now he said pink first, I knew that was what I wanted.  Pink and glitter make me happy and since glitter isn't a choice I knew pink was.   When I said pink the man on the phone said "well just go bold". I without thinking said "yes, my som taught me this". I didn't said much more

It was till later that I thought one of the biggest things that Zach taught me was to be and me wasn't the circumstances.  Zach wore his pumps, all 4 of them, as if they were an accessory!  He was happy to say something about them or show others that he was just an amazing child.

So yes I am going to wear my pump boldly for my son, who at the tender age of 2 started teaching me that the outside doesn't matter.  That education, exposure and knowledge helps the rest of the world understand.   That emotions can come out of no where but that ultimately those that love you, those that care don't care if you have to inject yourself at the dinner table.  You see how many see you for you, you see how many truely love you when life changes.  We experienced this through Zach's life and even more in his death.  However, I will be bold, I will wear my pump proud for my son!

Honestly..

I can honestly say that I can sit here and say I don't know what to say or type...I can honestly say that a lot that is swirling in my head right now are things that many won't get.  When a family has a child that is sick things a done differently, siblings grow up faster, parents adjust to different roles.  When that child or any child die people tend to treat them like they have some sort of disease that they can catch, now don't get me wrong they are there for a short season. But if I were honest with you people often are scared of saying the wrong thing or doing the wrong thing.  I can say sometimes not saying anything and not doing something hurts far worse that ignoring what is going on.

I honestly can't believe that I now have a 2nd grader, when did Aden get to be so big? Throughout this year I can see how he has grown, I can see how much he cares for his classmates and for the teachers that he has.  While I am sad to be leaving some of the people that I have been part of I know that God shut thre door for a reason.  While helping him hang up his calendar in his room yesterday I was encountered by a situation I didn't know that I could handle.  On June 14th he had it marked simply with zach. When I asked why he told me it was like another birthday for zach.  It was hard to tell himm that it was his death date but Aden simply said but momma it's important.  We marked his birthday so he will know and I sat and watched him finish his task at hand.

I honestly can tell you that it has hit me hard that I should have one graduating from Kindergarten this year, as I see one of his best friends graduate, I am reminded that his life was taken far too early, however, that no matter what God's plan is perfect.  I see pictures of the little ones that I love that are graduating and I take a moment and pray for them, what an honor!

I can honestly say that while I know without insurance things can be much worse but to find out how much my insulin pump is going to cost us out of pocket is hard to deal with.  Some how I dealt with all of zachary's things and we had all that we needed for him, I know that God was in it.

I can honestly say that while working on Remembering Zachary I am being reminded that little things matter.  We are collecting items to take to Scottish Rite to donate for the children that are there.  Zach often received things while we were there and they often helped us cope with all of the things that were going on.  We want to touch others and let others know that they are not alone!  We are collecting toys, puzzles, games, Xbox 360 games, movies, babies, playdoh, playing cards, craft supplies, balls, cars, etc.  I can shop for you if you can't make it to the store.  You can purchase online and have it shipped directly to me.  You can purchase it online and have it sent site to store (toysrus, target and Walmart all do that) I will be happy to tell you which locations are local to me.  You can send an electronic gift card, I will be happy to share my email address.  Even if all you can do is one item, it will touch one child, which in return will be touching one family

Honestly, things are swirling, fast and crazy but I am glad to be doing the things that I am doing

Remembering Zachary

As time quickly goes by and we are reminded of all the things that are coming up…. We are quickly reminded that 23 months ago (almost) my precious son lost his earthly battle to Mito.  He touched so many lives are there is never a day that I don’t think about him and wonder what he would be doing.  I wonder how it would be for him in school, would he be graduating from kindergarten this year.  I wonder who his best friend would be, If he would still like stickers, who his favorite character would be.  If he would still love to give hugs as much as he did.  I wonder if his smile would look the same.  I wonder how Aden and him would interact.

In saying this I would like to announce Remembering Zachary.  To Touch and Make their illnesses a tad easier for the 2^nd anniversary of his passing we want his memory to live on through donations of the following items to be collected by the Moody Family donated at Scottish Rite (TICU/PICU) in honor of Zachary. Zachary died June 14, 2011 after a life long battle with mitochondrial disease.  Zach may have mito but the mito didn’t have him.  We would like to remind others that they are not alone and while the four walls they are in might seem small there is a world that cares for them!

Items and ideas, please know that you can donate other things as well:

-hotwheels, cars, trucks, other vehicles of any size

-babies or other dolls

-markers all sizes and types

-paper: copy paper, construction paper of all sizes

-notebooks

-new dress up clothes (boys and girls)

-new brightly colored pillowcases

-books for all ages

-DVDs rating pg and under

-balls

-games for all ages

-stickers

-coloring books

-puzzles for all ages

-play dough sets and just dough

-pens, pencils and other writing instruments

-store bought prepackaged snacks

-drink mixes

 

We will be more than happy to go shopping for you if it would be easy to mail money, checks, or gift cards.  There is a store that is near us called (www.fivebelow.com) It is a place that I will be doing most of the shopping, all of the items are under 5 bucks but they have a nice assortment of games, beauty items, toys and other things that would be loved by those at the hospital.  If you have this store near you please check it out and consider buying from there it would be an easy way to take a little and help a lot.  Please know that if you can donate one item that would be accepted gladly or if you can donate many more that is accepted as well, we really just want to touch as many lives as we possibly can

just a moment

I wont promise that this blog will make sense, I won't even promise that there is correct splling or grammar, Please bare with me.

Every day I get up and I wonder what is going to happen… I kiss my husband good morning, get my son out of bed by turning on his light and tickling him (yes, I know this isn’t nice but if he isn’t up it is the only way that he will get up), I then begin to get ready for my day.  Many mornings getting ready for my day includes picking up my phone checking on the weather and then opening my text messages.  Sometimes I have one that I need to read but honestly most of the time I hold my phone in my hands and I start to pray.  I pray for the people that are so important in my live. 

The now widow, who was willing to come and sit with me when Zach was so sick and who immediately after Zachary’s passing did something that I will always cherish, that is still very much new to the title of widow that helps her children and loves on her grandchild.  The dear friend who opened up to me and was willing to tell me about the personal things that she has been through, who has had meals with me and who has cared enough to ask how I am doing, who has diabetes and who was in a major car accident.  The dear friend who has made me laugh more than I can tell her, who I miss since it has been a long time since we have really gotten to do anything, who tried her hardest to do the things that I needed when I needed them.  A friend that I love dearly and wonder how she is doing at getting her three boys off to school.  The dear friend who was totally honest with me and told me her story, every detail that I was willing to listen to, who listens to me even when I am not able to get things out, a amazing sweet person who almost never has her husband home and who hates to be alone. A very sweet friend that has adopted my family and that loves on us, who currently is having their family grown through a situation that I can’t imagine having to know what to do.  A friend who is willing to pray for me and talk to me when I don’t know what is going on.   I sit there and I pray and I think of all the amazing things.

See each person has things that we struggle with and while we are not always aware of it there is a reason that we are going through the things that we do.  Lately it is that God is telling me that He has everything that somehow it will be okay.  I am struggling with things that are beyond my control and yet God has been reminding me it isn’t over yet! Things will be okay.  I can look at each of the people that I pray for and I can say that I not only pray for them because of the situation that they are in now but also for the type of person that they are.  However, if I am truthful I don’t know what they are going through at the moment most of the time.  Most of the time I am thinking about the type of person they are or how they have touched my heart so much.  If we are honest with ourselves we all have titles that we can use and some of them will not be nice or pretty to be called but we can use them.  I simply pray for who they are and for all that they are.  I pray for all the ripples that they cause and for the ones that they cause.  I wonder if it will be just ripples or if the waves will come crashing over and yet I still sit there and pray.

God has brought me to where I am, Only God will take me to a different situation, I can move and do the things that he called me to do but I am still called by God to love, respect, care for and do all the things that He has commanded me to do.  Right now I also have to learn that Worry is not one of those things that God has called me as His child not to stress.  That the things of this world Money, medical, jobs, friends and anything else that I add to it are just God reminding me that I don’t have control but that it is all God!

Adapting

Adapting is something that I have gotten used to in the past fifteen years or so...
Think about the changing in the past 15 years

• Graduating college
• Getting married
• Having a job
• Having one child
• Having two children
• Dealing with brain cancer
• Dealing with mitochondrial disease

Well just to name a little

However, I can honesty say I am getting used to putting me first and to take care of myself.  After taking care of people and various illnesses, even dealing the health of myself. My body is telling me it is time for me to adapt again. 

After a very long time of dealing with pcos, insulin resistance and diabetes...I am dealing with it in a very new way.  My mother had type 1 very brittle diabetes, I grew up with insulin, shots, checking blood sugars and all the up and downs of it.  In 2002, I started meds for my blood sugars and insulin resistance.  My a1c had been great.

However, I'm trying to adapt since my body is having more issues and my blood sugars are high.  I am now in the process of using insulin to help.  In this it means I'm adjusting to shots and sticks but also am adjusting to carrying machines, meds and needed supplies.  It's getting warmer, how do I deal with it? How do I keep it cool?  Can I find something to keep up with it all? A pouch that has my personality?

I'm dealing with people not understanding or thinking about what they say before they talk.  The tests are pointing to this not being because of what I eat, mostly cause my labs are pointing to this.  I went from an amazing a1c to one hat is way higher than it should be.  I'm dealing with and adapting what I eat,  drink, and do.  Learning who can deal with me checking my blood sugar, give  myself insulin,and who is bold enough to help me by adapting themselves.  

We adapt as we live, with each breath!
I'm thankful for family and friends that are considered family

12... 12 what???

12 a simple number…. It can stand for a dozen of something.  It can be the number of any number of things, however, for me 12 stands for 12 hours. 

12 the number of injections in my knees and thumbs to help with the psoriasis all done at a doctor’s appointment that took an hour of my day to wait and 15 mins to see the PA

I got a pedicure done, my legs massaged, and my toe nails painted bright orange, think highlighter orange and got a butterfly on my big toes

I got my 2^nd holes changed to hoops, after the weeks that the starter earrings had to remain in.  I got to change them and I got to put hoops in.  Not a big deal I get it but for someone that doesn’t wear much jewelry and honestly who has NEVER worn earrings that weren’t studs, this is a huge thing for me.

I gave my best friend control to change my hair.  Yes, GAVE! See I have always had the same style… Never having bangs or layers.  Until this past 6 months I had never colored my hair.  I didn’t know what I wanted so I told her; she could do whatever she wanted as long as I didn’t look like a boy.  I think it is safe to say, I don’t look like a boy.  I just knew that I wanted something different and I wanted it to be short and well fun!!!

 

Why 12 hours?  See 12 hours was given to me as a gift as one of the ultimate signs of love and concern…my best friend gave me 12 hours.  She was willing to give up her day off to go with me to a doctor’s appointment to make sure that I voiced concerns that she has had to hear my cry over.  She was willing to watch the PA inject my knees and thumbs with 12 shots.  She was willing to help me schedule things that needed to be done that I have to have another adult at with me.  She sat and heard me call other doctors to voice concerns on new meds and things that I am learning about again.  She was willing to remind me to take meds, heck even waking me up when I fell asleep before I gave myself my meds.  She dragged me to get the pedicure because it was obvious that we both needed it.  She listened to me say that I didn’t want to look like a boy but that I would love to be more girly and ready for summer.  She took the time to listen to me respond to styles and to explain to her what I wanted for my hair.  She took the time to teach me the things that I needed to know to fix it.

So why am I telling you this… is it because I wanted to brag on her.  Well yes, I do want to brag on her, I am thankful that God has brought her to not only me but to my family.  But the main reason is because 12 hours isn’t a long time but it has made the biggest difference ever in my life and in how I feel about myself  If you know me you know that I very seldom put myself first, I am a servant and I rather serve you than have myself be served.  However, God really stepped down and showered me with love.  See I had asked several people to go to lunch, meet to pray, to just talk and we were all too busy and so I was feeling alone and isolated, not for anything that had gone on in the past but because of what is going on now.  I needed to know that I was going to be okay.  I mean I know that I am going to be okay but when you feel overwhelmed with life having someone invest in you makes a difference.

When is the last time that you cared enough to talk to a person, to a friend? I am not talking about small talk but to really find out how they feel and what is going on in their lives.  One of the changes that I am making to spend more time on others and on myself, to take the time to learn about the people around me.  How is their family? How are they?  I want to make a difference, I want to be the one that people know they can call on but also be the one that they know that I will call, come and help whenever they need it.  When is the last time that you helped someone not because of the appearance of things but because you were willing and able to do something that made a difference in their lives? No matter what they needed.

I can tell you it isn’t easy… I am sure it hasn’t been easy for those that truly know me to see me deal with the medical tests, doctor’s appointments and medications.  I am sure that they haven’t enjoyed watching me be so hard on myself and cutting myself down.  I am sure that it hasn’t’ been easy for them to change things about their own life to help me with my life.  I am sure they haven’t enjoyed the stories they have heard or the tears that I have shed while told them.  I am sure that they haven’t known what to say and worried that they were going to hurt me with words instead of help me with them.  I am sure that they just didn’t know what to do.  But truth is they did know.

They held my hands, wiped my tears, and heard my stories, didn’t discount my emotions or think that they would understand.  They have cooked dinner; they have taken care of my family when I didn’t want to.  We have laughed and had a great time in those 12 hours.  It starts with a moment, just a little time and desire to know.

 

How are you doing?

True friends Best friends

A friend is something that most people take for granted… I know that until I had Zach I did.  I never thought about what was going on and if I was going to have someone to share it with.  Zachary had an illness that robbed his body of his ability to grow, eat and to eventually live, he however touched everyone’s life that met him or saw a picture.  Even with an AMAZING spirit Zach didn’t have a friend besides Aden.  It wasn’t till towards the end of his life that we realized that because he was in the hospital so much he didn’t know what it was to be a friend or have a friend.

For me though it goes past that though… see we all have cycles of friends let me explain.  You have a good friend in high school, you may grow more distant when you go to college but you still talk however, someone else fills that role… you have a child and your friends change, we have a ton of situations that effect our circle of friends.  I learned that I had friends, people that said a lot of words, that did things with us and that seemed on the outside to care.  However, what I learned was that when Zach started to have issues people started becoming less available to talk and to do things.  Then Zach started going to the hospital a lot more and people said “you’re going again” and told me “well I can’t handle him being sick” or “I can’t handle yall going to the hospital again”.  Then well we had to make the decision to let Zach go and put him on hospice one of the hardest decisions we have ever had to make and I am venturing to say the hardest one we will ever make as parents.  I thought that we would have more people come around since we were home and dealing with it at home but that didn’t happen, even more people left, more friends.  Sigh, then the heartbreaking event of Zach’s body being no longer to take the struggles of this word happen, he went to heaven to receive his Holy and perfect body.  People showed up for a while but after the “newness” wore off so did their offers to talk and to do things.  Then we lost the circle of friends that we had because of Zach, they either thought that I would be upset because of their child being sick or they thought that I should only have “normal, typical” parents as friends. 

So why am I writing about this?  Simply because I have learned some things about friends, not only things about the friends that I have but the type of friend that I want to be!

·        I have learned that when you have TRUE friends BEST friends that you gain more than that one person you gain the family that surrounds that person.  Mothers, Fathers, Aunts, Children just to name a few.  They will speak their minds, hold your hands, tell you to call doctors and well tell you that you are beautiful!

·        I have learned that when you have TRUE friends BEST friends that they are willing to say their heart even if it might hurt you.  They tell you to get over it, to whine but then to put it up on the shelf.  They tell you need to redo your hair or get a new outfit.

·        I have learned that when you have TRUE friends BEST friends that they are willing to change their lifestyle to help you change yours.  They are willing to help you make lifestyle changes because you have to even though that means that it effects what they get to eat, drink and do

·        I have learned that when you have TRUE friends BEST friends that they willing to hold your hand and walk through a situation even if they have not a clue of what to do because they only want the best for you.  They are willing to pray for doctors appointments, hold your hand, encourage you and even go with you when you need support.

·        I have learned that when you have TRUE friends BEST friends that they are willing to do something that they might not like to help you through a rough time.

·        I have learned that when you have TRUE friends BEST friends that they are willing to have the same emotions that you have.  When you are mad, sad, aggravated, hurt, happy or a mixture of them all, they experience them with you!  Willing to cry tears because the only thing they can to is to hold you while you totally lose it

·        I have learned that when you have TRUE friends BEST friends that it doesn’t matter what time you call or text they will listen.  This isn’t just limited to them but to the family that you gain as well.

·        I have learned that when you have TRUE friends BEST friends that you learn to trust them with all of the silly and embarrassing things.  That includes the questions that you are too embarrassed to ask anyone!

·        I have learned that when you have TRUE friends BEST friends that they are willing to talk to you or text you into the early mornings just to make sure that you do fall asleep and that you know the dreams that keep you awake don’t make you who you are.

See I know that I want to be a better friend; I want to be the one that walks in when they rest of the world walks out.  I want to be the friend that gets asks embarrassing personal questions to because I am trusted that much! I want to be the one that is called on no matter what is going on.

Do you? Can you say that you are that friend? Can you say that you will stick around no matter what?