True friends Best friends

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Remembering

Zach had mito but mito did not have him... something that I say often and think about more.

To help others as we remember Zachary, To help Zachary’s legacy continue, To Touch and Make their illnesses a tad easier for the anniversary of his passing we want his memory to live on we are collecting items to be donated at Scottish Rite (TICU/PICU) in honor of Zachary. Zachary died June 14, 2011 after a life long battle with mitochondrial disease. Mito is a disease that can affect every part of the body, every organ system, in Zach’s case. Mito affected his ability to stay well, to gain weight, to communicate and to do a lot of the things that we take for granted.

Because of not being able to stay well, Zach spent a lot of time at the hospital we often would receive things that would make Zach smile, when Zach smiled it reminded me that we were going to be okay. Zach’s favorite things were stickers, cupcakes and play doh. Often however, Zach would get fairies and flower stickers because it was all that they had left, they often have more children than they have items to pass out to them.  When Zach died we bought all of the new packages of stickers, the dvds that we never got to open and watch, the new coloring books and all of the new toys that he had been given to the hospital, this started Remembering Zachary. We strive for each year to have more than the days following his death. We want no family to think that they are walking the path alone.

This is a list of suggested items (please know that this is NOT exhaustive), please remember and keep in mind that the patients are birth to 22 years of age on average. They can be boys or girls. Please try not to donate items that have to do with death. Characters like Monster high, Spongebob, Disney characters, Pixar characters are all acceptable.  Please remembering that items that can be used to do multiple things are wonderful to

Items and ideas for patients and families:
-hotwheels, cars, trucks, other vehicles of any size
-barbies or other dolls
-markers all sizes and types
-crayons
-paper: copy paper, construction paper of all sizes
-notebooks
-new dress up clothes (boys and girls)
-new brightly colored pillowcases (homemade would be best)
-new brightly colored blankets (homemade would be best)
-books for all ages
-Stuffed Animals (NEW and must have tags on them)
-Infant toys and Crib Toys
-DVDs (rating pg and under)
-puzzles
-balls
-Crosswords
-cards
-word searches
-games for all ages
-stickers
-coloring books
-play dough sets and just dough
-pens, pencils and other writing instruments
-iTunes gift cards (to be used by Childlife and therapists)
-gift cards

Items for staff and Parent Bags:
-prepackaged chips and pretzels
-prepackaged crackers
-prepackaged granola bar
-individual packaged peanut butter
-bottles of water
-drink mixes
-juice boxes

hope it makes sense

So this week has been odd…. I started off the week thinking… I know that I shouldn’t but I do…

I know that I shouldn’t be jealous but I am.

I know that I shouldn’t be tired but I am

I know that I shouldn’t worry but I do

I know that I shouldn’t be in tears but I am

I know that I shouldn’t be upset but I am

And If I am honest with myself and in return be honest with you I can probably add several more to this list.  In fact I can probably add specific things for each of these and for several I can probably time multiple things.

I can think about a new vehicle, since my van has to be replaced and I don’t know how we are going to replace it but I am going to have to replace it.  I can think about trips, trips to the mountains, trips to Disney, trips anywhere with the whole family.  I can choose to listen to the one that tells me not to worry or be sad because Zach is in a better place when my tears and sadness are because I am missing the love and the joy not because I want him back. 

I can look at pictures of me and my family and it instantly reminds me how blessed we are.  I can look at pictures and be reminded of how close and bonded my family is, how we know that we can pull together and love on each other when we need to.  I can watch my son love on and help others because he was shown that being a friend means more than just the easy things. 

 

So why am I writing this now…. My ideas have been swirling and until tonight I was thinking that this would be a dark and upsetting post.  Not that I wanted to be dark it was just that I was missing Zach so much and was having trouble with all of the unexpected things that are in our lives.  However, I am here to write another thing… Several months ago I started going to my best friend’s church on wed night, not because I hate my church, I LOVE MY CHURCH but because they offered a class on something that I very much needed to learn about.  After building some relationships I asked one of the leaders if I could pray with her, again something that it was nice to be able to hide a little, to be at a place that I wasn’t expected to do anymore than to worship and learn about God.  Somewhere that I could have tears if I needed and that no one knew about Zach unless I told them.  Now if you realize who I have been lately talking to others, I am not talking about small talk but real talk, has been extremely difficult for me so step one, ask if we can pray.  Step 2, actually meet to talk and to pray.  Step 3 talk! Yeah it didn’t work out that way, I made it through step one and step two but actually talking about things that matter, nope, I couldn’t.  The leader several days latter facebooked me a name of a lady who had also had a child pass away.  I fought it and I didn’t want to do it… well needless to say after 3 months and several facebook messages I met her tonight. 

Let me tell you about tonight, tonight was a night that I almost didn’t go… plans had been changed at the last minute, instead of the bible study that I normally go to things had been cancelled and there was a concert.  I was excited to go hear them since I like their music but I have never seen them in concert.  I texted and asked her if she was going… she said yes! So tonight I went with my best friend to a concert and met a woman.  Two things that God used to touch my heart. 

I stood and I listened to my best friend sing, not be shy and not shy away from me but to sing, I got to watch her worship.  I worshipped as well.  I was touched, smiles filled my heart.  I think about the conversation with my new friend and I think I want to be the one that God uses for giving others hope, I know that some of my days are hard and some days I am not the best to be around but I want to be as encouraging as this lady was to me tonight.  To lay it out where I knew that I wasn’t alone or feeling things that no one else got.  To say things that she instantly understood and was able to help me know that it will be okay, worked out for a purpose!