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