a new SITE!!!

I am touched to say that God has blessed us with a friend who is amazing at graphic designing and who understands the world of being sick.  Her family is a family of four, just like us, two boys, a mom and a dad.  Just like us…. Two major differences Zachary was able to go see Jesus and all four of them have mitochondrial disease.  Yes you read that right the whole family.  It was diagnosed in a child, then the other, then the mom and then the dad.  Can you imagine?

Can you imagine? I can’t because one is overwhelming I can’t imagine all of them having this disease that has no treatment and no cure.  This disease that destroys the body at different rates, sometimes slow and sometimes so fast that you can’t blink before something happens.  What is the fear that they have?

10 months ago roughly I met the mom of this family while sitting in the lobby of the neuropsychologist.  I was sitting there with Adam and Aden.  Not paying attention to anything but Aden picking on his dad.  This lady across from me kept looking at me and then we both got the courage to talk to each other.  I found out that roughly a day before she had read my blog, my blog, I didn’t know people that I didn’t know read it.  I know silly, but we are just an ordinary family that was touched by a disease that no one understands.  A disease that is taking children far too young and causing adults to lose the abilities that they once had.

She and I were talking about something I wanted to do for Remembering Zachary and she offered the one thing that she can do… her talents and her skills.  So I am very proud to introduce to you a new site that I can take donations through if it is easier than sending a check and something that will tell more information about what we need and what we are planning to do.

Thank you Brandi for helping me with my vision, for listening to me ramble and for understanding all my rambling!

http://rememberingzachary.weebly.com

please Consider using Brandi if you need something designed for your blog, business, or anything of that nature! She is a wonderful person and I know that she would appreciate the support.  thank you again Brandi, I deeply appreciate it!

www.sissyfrissys.com

Really almost 1 year..... Really!

So yesterday I came to the conclusion that I am not sure why God has our brain work the way that it does.  I realized that in 2 weeks it will be 1 year since Zachary was blessed to be with God.  I am not sure that I am excited about it or that I am looking forward to it but a really good friend of mine told me this…. Think of it this way, you got to one year.  Remember when you didn’t think that you could make it through one sec, one hour, one day, one week, one month.  Now you have almost 12 months behind you. Thanks, that is how I am going to try to look at it!

My heart’s desire is that I use all the things that I do and all the things that I have been through to touch and impact other people in a positive manor.  That I use Zachary’s name and his honor in a way that will always be positive and uplifting sharing with others the smiles and the joy that Zachary always had.  The 1^st thing that I am doing is an event that I am praying that I can make into a yearly event, which is Remembering Zachary.  During this event it is my goal to collect as many items that we can use in the hospital to bring hope to not only the patient, the child, but to their parents and caretakers.  It is my heart’s desire that no one walks through their journey without knowing that people are praying and that they matter.    

In doing this we are collecting items for the hospital to deliver to the patients but we are also collecting food items and other things for the nurses and doctors that are serving in the PICU/TICU.  These nurses and doctors are honestly sometimes the only people that you see during your stay there.  You don’t want to leave your child and you can’t bear to so they are the ones that come into your room and make a difference.  We want to thank them, let them know that they are not alone and that we appreciate it.  Almost a year out, I still think about the doctors and the nurses and I miss them.  I remember when we were there at the hospital and I was praying that they would come and bring something to Zachary to play and do because I was bored and having trouble being stuck in a room after 10 days.  I remember when Zachary would get things that it would make him smile and laugh and it would instantly give me hope that things were okay.  I remember Zachary stickering with fairies and flowers because they didn’t have boy stickers for him, Zachary laughed and was happy.  It brought him fun and smiles and brought me hope.  I hope to bring hope and joy to all those that I can that are living the life that we lived. 

I guess I am being selfish because I want to get so much stuff, so many items that we touch EVERY patient that is there.  So in having this dream and this desire, I am asking that you consider donating items to help us accomplish this.  We were asked to do an Amazon Wish list, here is this list to help.  They have shipping and can ship it directly to me.  Here is that link: http://www.amazon.com/gp/registry/wishlist/2SG56OQNW2UK1/ref=topnav_lists_1

Here are some suggestions of things that we still need:

·        Crayons

·        Markers

·        Coloring Books

·        Notebooks

·        Journals

·        Infant toys (crib toys, stroller toys, etc)

·        Stickers

·        Bubbles

·        DVDs (rated PG or less please)

·        Board games

·        Prepackage Snacks (for parents)

I realized I was blessed beyond my wildest dreams; My goal is to bless others! Please consider helping us do this.  If you would rather send a gift card or a check, I would be more than happy to shop for you!!!

I have learned…

I have learned that in a blink of an eye things can change

·      Things get better

·      This get worse

·      Life experiences happen

·      We fall in love

·      We have our life change

·      We realize that it isn’t about us anymore

I have learned that in a blink of an eye we do things that are ordinary to everyone till you find that you or someone that you love can’t do them.  Things like

·      Going on vacation

·      Going outside

·      Going to school

·      Not having a doctor’s appointment daily

·      Having friends

·      Being able to talk

·      Giving Hugs

·      Having a favorite food

·      Eating popsicles or other candies because they have one ingredient in them

·      Being able to leave at a seconds notice to be gone as long as you want for whatever you want.

I have learned that Happy things can be hard:

·      Graduations that never happened

·      1^st days of school

·      Spelling test, math tests or any other tests

·      Riding a bike

·      Reading and Writing

·      Birthdays that didn’t occur

·      1^st boyfriends or girlfriends

·      The heat of summer

·      Playdates

I have learned that sometimes you have to slow down enough to pay attention to the real things that are going on the simple things that we think might not be the true story, things like:

·      A six year old paying for toys in the store might be because he is giving some of his graduation money to buy some toys in his brothers honor not just so he can get more things

·      A child that is having a melt down at school might be because they are missing the love of a father who has died, a brother that has died or some other loved one that isn’t available to hug them not because they are a bad child.

·      An adult might be short with you and distant because they are dealing with depression, another medical condition, grief or pain that causes them to have difficulties. It isn’t just because they don’t like people or because they don’t want to be around people, sometimes it is hard to fight through it all and still be what we think others want us to be(all of us think we must be a certain way).  They might long to feel like they matter or that they still are a friend

·      An adult might be grieving the loss of dreams… dreams of a child being what they desired or dreams of what they were going to be,  dreams of always being with the one that they loved not because they are broken but because God had better plans.

I have learned that in a moment we learn who we are, who are true friends are, and we can realize how blessed we are to be surrounded by those that care about us. 

Remembering

A while back, I don't mean months but years ago, I walked into church for the first time. I was a sophomore in high school, unsure on where I fit in if that was even something that I could accomplish and wondering what it was about. I went that Sunday morning and found out there was a youth function later that night. I wanted to go, I wanted to be involved, to have a friend. I went and I had a youth worker who took interst in me and we developed a relationship that was amazing, she opened her house to me, she helped me when I was discouraged and she believed in me. she allowed me to fuss and to develop who I was. When my mom became I'll with brain cancer she was simply amazing, she cooked at least once a Week and she visited us while she was inpatient. She somehow walked this amazing line of being friends with both a parent and a child. She made my wedding cake for me and she drove the hour or more to attend my wedding. She was amazing. Several years ago, she helped me learn the basics about cake and icing so I could make cakes for my son. Zachary was turning 1 and couldnt have any milk protein, I needed an icing to decorate. She quickly emailed me the bare basics and a recipe. I made my first cake shortly after and she praised me for the attempt. I still smile at that fish with the huge blow pop lips and the little star fish that was Zachary's alone. Why am I writing well last night I sent a simple Facebook message... Hey! To her and quickly on my screen was Hi Kiddo! All I could do was smile, it flashed me back to nights sitting at her table or days sitting in her livingroom talking and sharing. It flashed me back to her livingroom decorated for my mom's 50th birthday that se celebrated literally months before going to be with Jesus. It reminded me of why we develop relationships? We are here to encourage and to help build others up, how are you doing? Do people know that you are one that cares that will be a good support or one that they shudder to think about. For me this friend, even though I have no gotten oldere, I'm no longer in her youth group, I know I care to her.

11 months

11 Months, Today is 11 months and so I am praying that I can start to get things together to take to the hospital. The pain is VERY VERY real and I am praying that this will make someone else’s pain a tad easier.  I know that the way I hurt isn’t the way the next one will hurt but I know that I lived a life that no one should have to and it ended far before we were ready for it too.  11 months seems like a breath then I am reminded that Zach has now been dead longer than I was able to carry him inside of me.  I am reminded that he is now dead longer than the number of days that he was inpatient for 2011.  I am reminded that these days will add up and will continue to grow and one day he will be dead on earth longer than he was alive on Earth. 

Zach was perfect and we let him do all the things that we could but we also spent lots of time in the hospital and making things better.  Today I was taking care of a little boy that was about the same age as Zach, he had what we think was an allergic reaction, I didn’t hesitate and I went back into medical momma mode.  I miss it, I miss hugging on Zach, talking to him, loving on him and taking care of him medically, I had a closeness to Zach that I miss.  I still wake up in the middle of the night thinking that I need to do medications or that I need to check the pump that is beeping.  I still have moments in the day when I think that I have to check for an appointment that I can’t miss or that I need to check to see if he is breathing.

The children that we are collecting for through Remembering Zachary deserve to have days, months and years outside the hospital but they are instead laying in a hospital bed with parents looking on wondering what the next things that they are going to be robbed of.  They wonder if they are going to have another day of school, a full night of sleep, a day without things going “wrong”.  They wonder if they have the procedure done on their child that they need to if they will wake up again, if it is worth it. 

11 Months ago, we were staring lovingly at our precious boy who smiled and loved everyone,  He was amazing and wonderful.  He had mito but Mito didn’t have him.  He struggled as Mito robbed his body little by little of the things that he needed to live and to cope.  We were robbed little by little of the time that we were could spend with him and the things that we could do.  Zach’s body gave up, Zach gave up.  The week before Zach died we had a conversation with Zach, he asked us if Buddy could go to see “Jsus” (Jesus) with him, I told him absolutely and that Buddy was his.  WE loved on Zachary and Buddy....we gave medications to them and made them comfortable.  11 Months ago today Zach and Buddy were blessed and welcomed into Heaven to spend time with Jesus.  Yesterday I had tears in my eyes missing him and my mother and I suddenly thought yes but Zach is hugging my mom right now, they aren’t alone and neither am I.

Please consider donating to help us take things to CHOA Scottish Rite, please help us touch lives that are desperatly needing some smiles in their lives right now.  Please help us bring smiles to children and tears to parents as they see their children enjoying themselves.  It all matters, everything no matter what, no matter how small or how silly matters. 

Items and ideas:

-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
-play dough sets and just dough
-pens, pencils and other writing instruments
-store bought prepackaged snacks
-iTunes gift cards
-visa gift cards

In honor of Buddy Zach’s friend for life.. There is a group online that is making them with build a bear animals. It isn’t buddy but for another child it would be a friend going through the same thing. We would like to help other families through this as well.

Please contact them at: myminibuddy@gmail.com. You can donate to them through paypal myminibuddy@gmail.com Any amount of money will help, I am not sure how much it costs but including shipping is probably close to 30 dollars.

Please make sure to let them know you are donating in Zachary Moody’s honor. We want to try to get a picture of all of them to save

Mother's Day

REALLY!!! It's Mother's day and I'm sitting here wondering how my heart and my brain will work through this. Mother's day a day set aside for us to celebrate the women of our lives. The women of our lives are neccesarly mothers but are women who have loved us and helped us through out our lives. I feel blessed that I had a mother who loved me... She helped me with school, taught me about unconditional love and walked through life with me as the apple other eye. In 2002, my mother after almost a year fight died losing her battle with brain cancer. Many people in my life now never doubted that my mom existed or that she was a lovely lady. In 2011, my life was flipped upside down when one of the people that mattered the most in my life lost his battle theirs mitochondrial disease. A disease that robbed him of a lot but didn't rob him of his spirit, zach had mito but mito didn't have him. Why am I saying this on Mother's Day..simply because of this...I am still a mom of two, I was blessed with two children and while one is now with God. I am still. Mom of two. This was the first mothers day where I have my mom and a child with God and I can say I made it through. It was hard and crushing but it was good too. I am praying that I will make a difference. My goal into make as big of an impact in my life as my mother and my son did.

Random

Once again it's been weeks I tried to write this blog before and it closed out so frustrated I shut it and went on with life...trying again! It's may, how in the world is it may already? I was very very thankful when may rolled around. See Adam's insurance wasnt effective till may 1st so once may rolled around I was able to call doctors, get meds, and know all is good. I'm thankful for insurance, as much as I, we, whine about it I am now aware that without it life is hard. During our time without insurance we had a er visit, a doctor appointment, an urgent care visit, lab work and cultures as well as medications....I'm thankful for insurance. Its may, how in the world is it may already? Aden is getting ready for the end of school... I'm excited as well but it also means that after a year of change Aden is going to graduate from kindergarten. Already??? My little guy is getting big. Adam and I are looking forward to Aden being made special, to us he is but he has made an accomplishment. I am in awe. He is getting big, riding a bike and graduating from kindergarten. Can't wait to figure out how to stay busy this summer. People have asked me for ideas for him for graduation, he has several things that he really wants and that we are saving for if you're intrested please text me or message me. Its may, how in the world is it may already? May mothers day, normally I'm always sending cards letting people kow how much they matter but I will be totally honest this year has been hard. I've struggled with buying cards and with signing cards and with what to do or give...this simply is a day for this one year I want to skip. For whatever reason I am missing my mom greatly and that has caused me to miss zach mor which has made me feel like I've missed the boat this year on one of the biggest days of the year to celebrate the women in my life It's may, how in the world is it may already? When I started Remembering Zachary, I honestly thought everyone had forgotten him, I mean I know that they hadnt but life goes on and I'm still hurting. I started it because I was hurting missing him. It started because I have very important people in my life that dont know that zach exist, that Aden isnt an only child or that adam and I have two chldren. Im honored that things are coming in, how many lives will be touched by the things that are coming in? I'm honored to be able to call him my son. People have asked me about things to do as part of this and so I was thinking I would write some about it all. My family and I would like to take items to the TICU and picu to the child life persn that can make sure that the items get passed out to patients and th families, these items bring smiles not only to the children's faces but to the parents and siblings as well. Sometimes it takes little things to bring a smile. These children are birth to 21 years old and may not be cognitively or physically able to do everything. In saying this that is why we are asking for all ages and genders. Often these children don't care if it is for the wrong age or gender they are thankful, zach often used princess stickers because that was all they have and he was delighted to show them off. Items and ideas: -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 -play dough sets and just dough -pens, pencils and other writing instruments -store bought prepackaged snacks -iTunes gift cards -visa gift cards -buddies as listed in several posts (please contact me for details) I would be delighted pass on any items and would be happy to shop if you would like to donate! I am honored to share in zachs name and in his honor. Thank you for helping me