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?