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?

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!

Long time

It has been a long time since I have written, if I was honest it has been busy and God has been super busy in my life.   I am learning that there are times when things don't make sense and yet God leads you down the path.  I'm learning to plug in the earbuds and to turn on the music and just roll with it.

I can not believe that february is almost over, it seems like it was just thanksgiving time and yet time is flying.  Since I wrote the last time I have learned that friends matter, now I knew that, I knew that without people that will love you and support you life can be too hard.  However I also went through situations that people decided to walk out on.  I have hated valentines day as long as I can remember... It is simply that I don't understand why you need a special day to say I love you, you should say I love you every chance you can get.

Now in saying this, this is the first valentines day that I was shown how fun this day can be.  It was fun to watch this day through the eyes of a child.  It was amazing to get to experience it through my son, Aden, he has a special friend and he adores her, they are like brother and sister.  He went to the store and bought her something, then he would go back and buy her something else.  It was super sweet! She made it to the day with quite a but bought for her.

I was surprised by my amazing husband with candy, a card, the best balloon ever.... It said valentines day is overrated!!! Totally a me feeling!  He also Suprised my best friend with a card and candy, since her Husband was out of town.  A true image of how much friends can become part of the family and How much of am impact they can make without knowing it.  I was suprised by a gift as well, a token of how much God has blessed my life. That through hardship, pain and life chamges there can be huge blessing.

  However I have to admit one of the best thing that could have happened to me was I got a new ring from my husband for Christmas.  It needed to be sized and yet two months later I hadn't taken it.  it  was breaking my heart that since the medical issues that I am having I couldn't wear my old engagement ring, it would cut my finger.  I tried it in the day before valentines day...it fits and even better I can get it  on and off without struggling.  I'm super excited about it, I am wearing it and I am totally stoked!

I hope that life will settle down and I will blog more, God is working in my life and I'm holding tight with earbuds in jamming along.