2016

Its 2016 and I should be thinking of all the new and exciting things that are coming our way.  I should be remembering all of the amazing things that this past year had for us.  Truth is I am hopeful; I am thankful that I am promised by God that He will never leave me nor forsake me (Hebrews 13:5).  I am thankful that I am God’s child, that he chose me and that he loves me (2Corinthians 6:18).  I am thankful for trials that have reminded me that being in the fire refines us and makes us stronger and purer (1 Peter 1:7).

Truth is 2015 was a continuation of trials that have reminded me that we are called to help, called to love and called to do all that we can do for those around us.  I can say sometimes a drink is all we can afford but can change a life.  I can say sometimes we have a second for a text and that text helps bring a smile to a face.  I can say that sometimes time is more valuable that an amount of money.  I am blessed to have people in my life that have poured into me and helped me remembering in the storms there are rainbows. 

I am a different person now than I was 5 years ago and because of that I am going to strive hard to be the light that people may need, I am going to try to love all that I can love and I am going to try to be a positive difference in those that I come in contact with.  I want to be real though. 

See I know that sometimes you don’t know what is going on unless someone tells you, I know that sometimes you may be trying to take it second by second because literally looking a minute ahead is too long.  I am here to say that you are not alone.   You are never alone, have the courage to speak up.  Have the guts to ask for help, to ask for a second of someone’s time, to ask for a drink, a laugh, a hug.  Share a smile and say Thank you. 

December 2015 was rough for me, it was hard faces battles that I have seen before with different faces, it was hard to realize that I each step had to be taken at by itself, one at time.  It was filled with illness and death.  It was filled with reminders that life has changed.  I won’t lie and say that I understand the plan or that I am okay with the plan.  I won’t lie and say that the waves of grief and pain don’t hit hard at times.  I will say I am blessed, I have a loving husband and son.  I have loving in-laws and family that walk the world for me.  I have extended family who loves me. 

So what do I want in 2016… I want to walk tall, support those that need it, make sure no one ever feels alone, be a light for God and show His love to others, and I want to smile when all I feel like I can do is cry.  Why smile? Cause I know I am blessed and have a lot to be thankful for

I choose

I have been absent from typing simply because life got busy.  Things got hectic and well I thought maybe life was better without my few words that I tried to put into a logical sense for the world to read.  Then I was looking at something and I found pictures from the blog, they didn’t have words with them, they simply were the pictures and my heart started doing all sorts of things.  I was happy, sad, touched, hurt… well everything.  Pictures that I miss because they are of a smiling boy, well in many cases of smiles boys.  My life…. My boys!

Life has changed: I have an amazing husband who now has his B.B.A, his Masters, and his C.P.A license, I have a son who just turned 9, who now can read and hold conversations and is amazingly awesome. I know I am biased and that is okay.  I am now working and have a classroom of 21 new little ones (of chickadees and muchkins).  I have a family who walks the world for us and that I know we are taken care of and I have a best friend who I couldn’t imagine life without and who helps me more than anyone knows.  Yet on top of this I have a son who was blessed to go to Heaven.  I know he is there, my best friend while she never met him knows that he is there and helps me know that it is okay to hurt and even more okay to be happy.  Yes, life moves on! Life moves on even for me. 

Sometimes I still feel like time is stopped only for me, that the pain is so real and so painful that I can’t breathe without feeling like I am going to have my chest shatter.  Sometimes I still get mad at people who seem to think cancer is the only way to die or that certain things are better/worse to die of.  However, I can see that life moves.  Good happens, God’s grace is evident   I won’t sit here and pretend that I don’t miss people or that everything is always good.  However, I can tell you that I am stronger, that I will be always be moving towards touching as many lives as I can.  I strive to let others know that they are not alone and that no matter what they are never in it by themselves.  Its okay to hurt to be mad to want it to change but it is okay to celebrate birthdays and to see good in bad situations. 

I will look at the pictures and I will see hope, I will see joy and I will see love!

Pouring my heart out:

One of my best friends just had a life changing event, one that she will one day recover from but she will always be changed.  It is something that changes her and makes her wonder if she could have done something different or if she was bad.  One day she simply texted me and told me that the little one that was growing inside her is no longer alive.  Without warning the excitement and joy of being pregnant again, of having another precious one was ripped away from her.  She was only weeks pregnant, I say that like it makes it better.  Deep down I know, well no I don’t I assume, there is nothing that will make it better.  You simply develop a new normal.  Whatever that means, I know that I can love her, support her, listen to her without judgment and hold her when she needs me too.  I pray daily that she knows how much I love her and that I AM here. I listened to her as she tried to get meds from the pharmacist and the days as her body did what it needed to do.  My heart broke and I suddenly realized that I had no idea how hard it was. That this was one more thing that over the 30 years we have shared together

The other day I was thinking about her, I was thinking about what we do when we unexpectedly loose a child, what do we do if we know that we will be losing someone that we love.  For some unknown reason a page popped up in my newsfeed on FaceBook.  It was of a beautiful couple whom I don’t know holding a baby that didn’t survive outside of the womb.  They were holding each other in a beautiful picture that I can say they will never get a chance to make again, made in the hospital right after birth.  This organization is called “Now I lay me down to sleep” (www.nowilaymedowntosleep.org).  They (the photographers) go into the hospital at a time when tears and heartbreak is common.  They provide pictures for the family.  Ones that they can look at whenever they may feel ready no matter when that may be.  Some rejoice in having that special family picture immediately some have to wait years before they come to a point in their grief to accept it.   

My friend’s baby was too young for this service but I found it touching that this was offered and wondered if someone else that I knew may need this service at some point.  I wanted to spread the word and make sure people know that no matter what happens they are not alone.

See I still don’t know what to tell my friend, HONESTLY, I have no idea what it feels like to carry a baby in your womb and then have it die before you even get to deliver.  I look at the picture that is over my mantle and think that is the last family picture that I will have of my whole family.  It was taken two days before Zachary died.  It calms my heart, so what do I say to my Best friend who will not have that.  I am sorry “dirt” that I don’t have the words.  I am sorry I don’t know what to say, I am sorry that I can’t help somehow.  I don’t know what to do or say but I can tell you what I do know:

·       Losing a child is never comfortable, it is never okay.

·       Once you lose a child you lose part of your heart, it will forever be longing.

·       It doesn’t matter how old the child, you will always wonder what life would be like.

·       It doesn’t matter how much time you have with your child, once they are gone, it HURTS more than you can explain, your world stops and you have develop a new sense of normal.

 

I love you “dirt” and I am delighted that over all the years I am still here with you! I will always be here

Mountains, Molehill!

There are moments when you just kinda curl up, pulling your knees up to your chin and hide under the covers praying that no one sees you or needs you.  In our society we have phrases that let others know that we are struggling with things.  The main phrase runs through my head right now is “making hills out of molehills”  We often use this phrase when dealing with something negative, mostly when people can’t handle a situation.  I, however, would like to challenge you to use this phrase positively. 

Immediately after Zach died we took one 9x12 box full of items and took them to the hospital to be given to others that were in the hospital and facing times like we were no longer going to get to have.  In that moment on that day when I will admit I wanted to do nothing but curl up and hide, I wanted to try to touch more than just me.  I tried to reach outside of myself and touch others, to remind them that they weren’t alone and honestly that well it was worth it. 

Fast forward to 2014, 3 years later and I can say I think that molehill, I mean 9x12 box, has become a huge mountain.  This year I prayed that we could touch as many lives as possible, that we could touch Moms, Dads, Brothers, Sisters and Patients themselves.  I prayed that we would touch Doctors and Nurses.  I prayed that we would touch anyone that might need a smile or a simple reminder that they were not alone. 

In praying this, I took action, I emailed and facebooked my heart out.  Asking everyone to pray, to donate items and to make a different even if was just for one person.  I was immediately amazed to get my first box of items donated.  The box was full of items, it was more than one life touched.  I thought “ok God Thank you!” and I thought it would be done.  Well as my pleas went out and things straggled in I was worried that this was the year that time went on.

See one of the hardest things about losing someone that you love is that the world goes one.  The people that flooded you at the funeral leave, those that helped are gone and you’re left picking up pieces.  I was worried that this would be the year that my sweet strong amazing little boy would be forgotten not because people forgot him but because time moved on.  People got busy, money got tight, Children got older and well time flies by. 

Then one day I got a text, simply saying “I need to talk to yall”  Yall being Adam, my husband, and myself, after several hours and several texts later I was shocked to think that my church was going to use Remembering Zachary as the missions project.  Now if you know anything about VBS and penny wars, this was and is a huge deal.  Every night we took Aden and we went to VBS, we worked and listened to the lessons that were being taught, listening to their goal in awe.  God is faithful to complete that which He starts, and truthfully I was praying for $100 maybe $200.  Then it hits me that they were not just doing pennies but they were collecting some of the items that could be used at the hospital as well.  Not only was that but my mountain was built even more as I was asked if the children could help fill some of the bags and if they could be involved. 

This morning, Tara Baptist Church ended their VBS in the morning service.  The mission is explained to everyone that is there, since not everyone makes it to VBS and a total was given.  The total was $500.85, this alone shocked me, really, you’re kidding me right! That is huge.  Well see my mountain wasn’t tall enough, this isn’t the end of this story.  The God that made Zachary perfect, that loved him enough and blessed him by allowing him to die, wasn’t done yet.  Walking out of the doors I was grabbed and asked if I had heard the new total… “Yes, it was announced” her response…”no, that wasn’t it, want a new total?” Now I thought one or two more dollars maybe fifty dollars.

Nope God made my molehill, my little to do about nothing, and made it huge, a huge huge mountain.  Grand total was $871.42  Now I will Confess I had no clue that God would bless us so much that God would give us a mountain, that we would be able to touch so many but I am reminded God can do anything that if you ask Him and if you are in His will, He will be faithful.

 

Tara people: THANK you!!!! I am beyond blessed and shocked at everything that was donated, thank you for allowing us to share about Zachary and to be reminded that he was very much part of the church.  Thank you for missing him, loving him and caring about us!  Thank you for allowing us to share love and smiles to so many more people than we ever know. 

Times....

There are times that we simply have to sit and wonder about things…. Each of us do this.  Sometimes we simply wonder how an old friend us doing or what would have happened if we chose to go into a different field.  As parents we wonder if we are empowering our children to be successful and productive citizens of their communities.  As children we wonder why our parents had ways for us to do things, if there was a reason behind it or if it was simply how things happen. 

I can go back and I can think as younger adult I can remember wondering about if I would finish school and be successful, if I would ever live on my own successfully, I knew that I would but I wanted to be successful and not struggling to make ends meet.  I wondered if I was going to ever date, marry, and have a family. 

I can as an older adult (not calling myself or anyone else old) I can say that I still very much wonder about things… I wonder how things work together, I mean I know that everything that is occurring or everything that has occurred all is orchestrated by God’s hands.  Not only is it orchestrated and planned by God but it is for a reason. 

Now I can type that I did in fact graduate from high school and I even got a B.S. in College, I did marry a wonderful man and gained an amazing family with his love, I have been given amazing friends that have become part of my family.  I do work and make a difference in lives, and I was in fact given one of the most amazing, touching, rewarding, difficult gifts in the world.  I was chosen to be a Mother.

As a mother the looking back on how life could be different happens all the time.  It isn’t always serious life changing things that we wonder about but as a mom we do.  What would have happened if I had let them sleep longer? Why couldn’t she have just worn what I wanted her to? Why did my son have to wear his super hero pjs again out? Why can’t I get things done?   For a few Mom’s that I know those things that we worry about are a tad more serious.  Do we do this surgery? Do we take the summer off of therapy? Do we tell people how sick they are? What do we tell the family?  For a few of my friends they have the overwhelmingly painful experience of having a miscarriage.  For those their tender hearts not only wonder but they doubt… Am I good enough? Will it happen? Did I do something wrong? Do I share with people that I lost a baby?

This week is a week that I wonder a lot… I used to think that Birthdays were the only time that people really sat and wondered about what happened, is happening or what might have been.  I have learned in the past 3 years that in death we do the same thing.  I would like to make this clear before I even start. I know where Zach is, I know that since he is blessed enough to be in heaven, he is healed and whole.  However, in knowing that doesn’t take away that it has been a while since I have had my baby in my arms, loved on him, heard his voice, touched his skin, heard his giggle or taken care of him.

I wonder what he would be doing.  I wonder if he would be sicker or if he would have stabled out? I wonder if he would have new equipment, I wonder if he would have finally made friends, I wonder if he would enjoy school,  I wonder if he would be talking more, if he would still be into elmo or if his big brother would have introduced him to a new character, I wonder if cupcakes would still be his thing, I wonder if his smile would have gotten bigger. I wonder if people still remember that I have two children, if I should say that I have two and go through why one isn’t here with me.  I wonder… yes, I wonder.

I also look back and see all that we have been blessed with…. I am blessed that our family endured illness, treatments and death together all a whole and became stronger.  We didn’t say we wouldn’t or couldn’t handle it and no one walked out.  I am blessed that I have an amazingly in tuned son, who doesn’t see disabilities or differences.  I am blessed that I have gained some friends that go through things that on one will ever know but still show up every chance we get to love on me.  I am blessed that God has given me the ability to love and grow and become stronger. 

This week I am blessed to be able to go back and look at pictures and read about events that swirled around quickly in 2011.  I get to see pictures of going to pick up an amazing cake made by one friend, commissioned by another friend, and brought to our area by another friend,  See that is a confusing sentence!  3 separate friends working together to help us do something that we didn’t know how important it would be at the time.  I get to see pictures of our Make a Wish trip, to see smiles and the love that we shared during our last trip being a family of 4.  I get to see my husband loving on my son and the smiles, the love that I miss and I know that he does as well.  I get to see me holding him at one of the last family outings that we made breakfast at IHOP. I get to see pictures of people coming in and out of our home to loving on us. 

I do have a ton of questions and I still have days filled with hurt and tears.  However, I have a lot to remember and a lot to be thankful for

Mother's Day

My dear sweet boy,

In my head you are still almost 4, however, I realized lately that you will almost be 7 years old this year.  I can’t believe it. It is almost Mother’s day.  It is almost to the anniversary of your death, the date that you were blessed to go see Jesus and be in the presence of God.  It is almost to another birthday, to your 7^th one.  To almost everyone else these are just ordinary dates, ordinary boring days.  To me, thou it is a reminder that I had something that I was extremely blessed with taken from me.  I know where you are so I don’t consider myself to have lost you although lately I can’t help but wonder what did I lose?  So another Mother’s day with you in Heaven, another day with you with my mom and surrounded by the loving caring amazing God in Heaven. 

I wonder if you are celebrating in heaven with my mom…. Are there cupcakes and skittles at every meal? Have you managed to put stickers all over heaven?  Do you still have the most amazing smiles? Do you give the most amazing hugs? Are you with my mom? Can you see your brother? Can you hear all the conversations and do you take sides?  Are you sitting by Jesus asking Him to give us 5 more mins?

I wonder what you would be doing if you were still in my arms.  If you would have made it through with kindergarten with friends? Would you know your letters? Your numbers? Would you still have oxygen or TPN? Would you be wheelchair bound or would you be running marathons? Would your heart be filled with the love of those new friends that we have? 

I miss you so much but I also miss my mom… I pray today, this week, this day that you are loving on my mom in a way that she imagined as I was going up.  I pray that you can throw your arms around her and stay in her lap.  I pray that she is able to pull you close.  I pray that you are able to have moments like I did growing up.  Mom Moments that when we are young we don’t realize that they mean so much it is only when it is gone that we realize that we not only loved it but we NEED it. I miss my mom, her hugs, her love, her laughter, her care.  No One cares like your mom.

This year Mother’s day is hard for me, not all because I am missing my son, part of the reason why I am a mom but because I am missing my mom, the reason I am here.  I am blessed to have Aden, the other reason why I am a mom.  I am blessed to have an amazing Mother in Law, I am blessed to have other Woman in my life that matter.  I am blessed to have a husband that loves on me and friends that love on me.  Tears come hard and fast without reason this year.  This is I long to be in my mother’s arms, feeling her love being the only one that matters at that second. 

 

I love you mom! I love you Zach! I pray yall have skittles, a cupcake, enjoy some football and sticker some for me!!

Remembering Zachary

Remembering Zachary and Why we do it!!!

 

I was blessed to at one point be part of the Scottish Rite (CHOA) family in Georgia, I was blessed at one point to be part of the medical world.  I was blessed by having a wonderful and amazing Family.  My son Zachary was the reason why I was blessed to be in the medical world.  Zachary had Mitochondrial disease but mitochondrial disease did NOT have him. Mitochondrial disease effects the mitochondria of the cells.  Every cell of your body no matter who you are have a mitochondria, however, those that have mito have issues with energy production which is what the mitochondria do.  This means every part of the body can be impacted.  Mito looks different in every person that has it and while Zachary was blessed to not have seizures and to be able to walk at times... There is NO treatment and NO cure, which research is hopeful that one day there may be a treatment for Zachary there was no treatment and no cure.   There were times that his body had to decide if it should breath or hold his head up, if it should breath or walk.   His body was tired a lot and so we spent time in the TICU and PICU a lot due to mito crashes but also to infections because his body couldn't make enough energy to fight them off. He had trouble gaining weight and had difficultly growing; at the time of Zach's death he weighed less than most 1 year olds do.  Zachary had lots of tubes and medical equipment throughout his whole life.  During his time at the hospital the hospital staff loved on Zach and often my face of HOPE. 

 

June 14, 2011 after being home less than a week Zachary was blessed to go to heaven and we were left wondering what to do.  We had been given lots of the things that Zachary loved to do but yet he never got to touch it.  On June 15, 2011 we made our way hurt and devastated to see Zach's Favorite Child Life person Lauren with a box of things we wanted to pass on... Barney movies (which was his favorite), Stickers (which was his favorite), coloring books, playdough and a slew of other things.  They were shocked to see us already and truthfully it was hard but we wanted to make a difference.  To pass on the things that were given to Zachary but he never got to enjoy.  To share Zach's legacy

 

It started with one box of items and that box was to share the love that our son was and to hopefully spread hope.  In my heart, I prayed that it would be a smile and that smile would in return be the glimmer of hope that I so needed when I was isolated in the hospital.    Each year I pray that we can collect more than that one box of items in order to pass it on to those that are still living the life that often can be hard and isolating. 

 

We are starting this process now... we hope to have more than the past couple years. There are a number of things on the list and I am letting people know early so we can try to collect as many as possible. Some of the items are going to seem a tad odd and some are going to seem like a given.  To those that have followed us on facebook (https://www.facebook.com/RememberingZachary) in the past thank you!!!! If you are new to this journey please go and like us and help us share the Remembering Zachary. Help us touch as Many people as we possibly can. Following is a list of ideas or items that have been asked for that can help.   Please know that anything helps and even if you can only do one item that is still one child that can be touched.

 

Items Needed:

• Items for parent bags
• Wrapped Protein snacks
• Wrapped  Sweet snacks
• drink mixes
• Items for Staff Appreciation
• Wrapped Snacks of all kinds
• Wrapped Chocolate and other candy
• Drink mixes  
• Stickers
• One piece Infant toys
• Plastic Crib Mobiles (5-10, they must be able to be wiped down and sanitized)
• Playdough and playdough toys
• DVDs for all ages
• Games for all ages
• Puzzles for all ages
• Journals
• Barbies
• Hotwheels
• Legos
• Tattoos
• Coloring Books
• New Books
• Anything Crayola
• iTunes gift cards 
• musical instruments (like egg shakers, small drums, small tambourines)
• homemade pillowcases or new pillowcases

 

 

Please contact me if you have questions or if need to meet up with me. 

I will also be happy to give you my address to ship items and if you would like to send a gift card or a check I will be more than happy to go shopping for you.  You can do site to store as well and I will be happy to pick up just please tell me what location you sent to.  Under each the closest will be listed 1st.

 

Site to Store Ideas:

• Walmart- Lovejoy
• Walmart- Hudson Bridge
• Walmart- Fayetteville
• Walmart- Griffin
• Target- Fayetteville
• Target- Jonesboro Road/McDonough

Communication

 

Communication: Imparting or interchanging thoughts, opinion, or information by speech, writing or signs.  Sharing news, views, or information between people. 

I came across this picture today and it made me think, it made me remember.  The picture said... Just because your child isn't communicating verbally doesn't mean that they are not communicating. I had a son that was considered to be nonverbal but if you knew Zach you knew that he communicating  loud and clear to everyone that was near him.  He smiled, laughed, giggled, he had a twinkle in his eye.  I have known others that can’t verbally say a word but are dearly enjoyed by their family members and friends.

This picture simply reminded me… Body language means a ton! A simple smile, giving your time, reminding someone that they are worth it.  There are many diseases, syndromes, disorders that can cause a person to be nonverbal.  This is where my thoughts are going to change a little so please follow me. 

Do you know who is writing this blog?  Some readers have known me as long as I have been alive and they know all of the things that I have shared.  Some are new and have only known me for a little while.  Some know me through the social word and technology.  Here is a little about me…

                                I was born Sept 28^th and I am an only child

                                I love teal, pink and brown

                                I love love love Sparkly things, glitter…YESSSSS!!!!!!!!! I love Glitter

                                I am married and I have been blessed not only with an amazing man but with an amazing family.

I have always been one that other have come to for help, to talk to, to run ideas by me and to ask for prayer.  I have never been a judger and have often wrapped my arms around people.  But, I have trouble talking about certain things.  In 2007, Zach was born and I was ecstatic.  It wasn’t till we were in the hospital a lot that I noticed… People didn’t have the words to talk to me.  I stopped getting phone calls, emails, cards, visits.  Then I started to try to talk to people about what Zach was going through.  I heard I don’t have the words to say, I don’t know what to say… Truth is none of us do.  Zach got sicker and people went further away.  It wasn’t till Zachary came home on hospice care that I realized how badly certain things were for me.  I no longer heard verbal communication.  People weren’t near us, they were choosing to stay away. 

Communication was being done…Body language, time, resources were painting a picture that I still have in my head some days.  It brought back insecurities that I had.  Fears about talking, speaking, sharing.  Fears on being transparent.  I am still working on getting my verbal communication back but I look at this picture and I think.  I have a family, I have several friends that Communicate with me without using words.  They are allowing me to a few words at a time, build myself back to a person who rejoices to use ALL communication. 

What would I like you to know? Please use all of you to communicate.  Speak to your Children and to others.  Even more so remember that every person is worth being listened to no matter if it is a verbal communication or not. Remember we are ALL worth it!!!

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