out of the BOX

I have been trying to figure out what God wants me to write.  I mean I start something over and over again but NOTHING sticks through a full thought.  It is hard because I can’t seem to get something to finish, to share a thought that will complete my heart.

I think for me it has to start here…. We each have things that God calls us to do, things that are often outside of comfort zone.  Think about it before you accept God before you follow God. You step out of your box and you choose to accept Him.  Before you graduate from college you graduate from high school often leaving, going to a new place and start studying something new to you.  Before you get married you go on a date.  Before you get a job you go on an interview.

You get my point… I kinda thought that you get used to being uncomfortable and stepping outside your box, outside that comfort.  This doesn’t mean that it gets easier just that you know that it is coming that life is going to change and that you are going to be going out of your box again.  However I am learning that isn’t true.  Sometimes those changes, those things that are outside your box seem to come out of the blue and to be unexpected.  I am a social person; well I am the one that tends to care about others, to take care of others, to want to be prepared for every situation to be prepared to help whenever needed.  I am a person that wants to make a difference.  I am the one that people come to for help, advice or just to vent to.

What I am learning is that I am a private person. I don’t like sharing about me; I get nervous about really really being open about the things that have happened in my life.  I am taking a class at another church right now, not because I want to move Churches but because it is a class that I need to take.  In taking this class I have learned I love it because no one knows me, I can hide and I can be upset if I am upset, the mask of truth can be different.  However, the other side of this story is that I don’t know what to say, how much to say, I don’t know if they will keep things in confidence, will they judge me? Will they run away screaming? I don’t know if a bad emotion or tears will make them all want me to be banished from the table.

I am learning that I am one that finds it very easy to serve however, I am not good at being served.  I am not good at accepting compliments, or even honestly understanding them.  I don’t understand why anyone would want to walk with me no matter what the situation is or how many we walk through that seem to be hard.  Part of this is because of the situations of the past.  I was told a lot that people would be there no matter what I needed and then Zach got sick and people got scared, they weren’t able to handle it.  Then he got really sick and they left the relationship all together.  Then everyone came back when Zach died, at least for the first couple days, well until the funeral then they ran away.  It has left me not knowing what to say and what to tell people that I feel.

Why am I mentioning these two points because.. this is what God is working on me with? I am learning what it means to honestly pour your heart to a friend.  To tell the content of your heart without the fear of being judged, laughed at, blamed, or having then run away.  To tell it knowing that the other person may need to help, to wrap their arms around you, to talk to you, to make phone calls, to run errands.  To laugh, to make up funny songs (do do doodoo, do do dooodoo), to be willing to text  no matter the time or day, to be willing to drop everything and help!  To realize that I am not the only one, that I am not alone.  That forgiveness exists that bad situations can be used for good, to help, to heal!

See in one day I was asked by God to

1.       To accept the fact that I have good friends

2.       To accept the fact that I have to ask for help?

3.       To give my number (to text) to someone that I have known for 6 weeks so we can continue to deeper our relationship.

4.       To be open enough to send a text and then to send a more in depth email

5.       To be honest with good friends

6.       To do what I need to do to develop the relationships that I have been blessed with.

7.       To be honest with myself

8.       To admit when it is not okay, when I am not okay

9.       To write, to be honest, about who I am

In knowing this I am in awe, who am I that I can be used to make a difference? I think one of the biggest things is that emotion that I have on not wanting anyone to feel alone, is now me knowing that I am never alone.  We are NEVER ALONE!!!

cake

Remember in my last post when I said that I sometimes just think about random things… today’s is a message that I feel deeply about and it is one that surprises me.

I have a friend who I ask questions to when I need to know something about allergies, not that she knows everything but she knows where to go to get answers.  She has helped me find doctors that will be more the style of medicine that our family needs.  She has been willing to talk to me at odd hours and to be chit chat about everything.  Today, I was reminded about how the simple things can make a huge difference.  In this case CAKE!!!!

When your birthday rolls around what is one way that you celebrate??? For most of us it is a cupcake or a cake! What happens if you are allergic to dairy, eggs, gluten?  What happens if you allergic to it all?  What if you are a child that needs to have a very special cake, cupcake or cookie made or you can’t have it at all? Now I faced this in a small scale when we celebrated Zachary’s birthday because he went from having a milk protein allergy to not being able to eat anything, however Zachary never really loved to eat.  He wanted to make the cupcakes but didn’t care to eat it!  I have friends that can’t eat anything but potatoes and plain chicken… can you make a cake with that???

Today I was reminded of this as I was thinking about several families that I know that face this… There are amazing people in this world!!! In this case seeing a business card at a doctor’s office I was reminded of Cake.  It made me smile to know that someone is out here that cares that much.  The card was for the lady, the friend, that made Zachary’s last cake and who made Aden’s 6 year old birthday cake.  Someone who took the time to talk to Aden and design a cake that was exactly the way that he wanted it even when he honestly didn’t know what he wanted.  I was able to order GF cupcakes from her for a friend of mine that I wanted to surprise.  She works with an organization that is called Icing Smiles, whose goal is to provide cakes to children that have illnesses and to their siblings.  I have seen her make things for children and adults who can’t eat the things that I take for granted. 

Now I have been talking a lot about Remembering Zachary and making donations to help families in the hospital.  I have been talking about my friend and compassion but today I want to put a plug in for a friend and her amazing company Sweet Startts!  www.sweetstartts.com is her website.   She has decided to use her talents to touch all those that she can. I have seen and heard the time that she spends making dreams come true! Take a moment and look at her stuff and if you need something that she can do (which seems like everything) contact her!  Her heart is amazing she cares and is amazingly talented.  I know that she is going to kill me for writing this post but it was something that was laid on my heart today while checking out of a doctor’s office!  The next time you eat cake or a cupcake think about those that can’t eat it! I know that I do!

Amazing...

Every day I take a moment and I think about all that has gone on in our lives.  Some days it is the little things like the weather being cooler and some days it is harder to deal with things like health or those that are no longer here with us.  Sometimes it is desires that are ever present like one more hour of sleep or a few more dollars.  However some days, sometimes it is just simply being amazed at what I have in my life.

Today, I honestly have to say that I am amazed… see if you don’t know us or don’t know us well September is a month full of loving stress… this is commonly known in my house as birthday week.  This means that there are 3 people in our household and out of the 3 all three of us have birthdays in the same week.  Adam is September 27, I am September 28 and Aden is Oct 1. 

Aden was very blessed with some money to buy whatever he wanted, normally, Adam and I take tithe out and give him the rest but this time we felt like Aden was old enough to start learning about tithe.  So we laid all the cash out and Adam taught him about “God Money” and Aden learned that money is telling God Thank you for giving him the money.  After putting the money that he was tithing in an envelope, I asked him about something else…Fabrice Oegadegu...This little boy is the child that Aden’s school has decided to sponsor.  He just turned 7 on July 27; Aden will be turning 7 this year.  So I asked him out of the money left would he like to give any to Compassion International to Fabrice and his family.  Aden has occasionally been donating money to him and to his family and I wanted him to have the chance to donate again. 

Aden, my soon to be 7 year old, reached out, took two dollars and handed it to me.  He without thinking about it said… “MOM this should make a difference in getting food to his family”.  Now I will be honest I don’t know how much it will take to feed Fabrice and his family, however, I do know that money goes a long way where he lives.  I do know that two dollars can make a huge difference in food, healthcare and in schooling for him.   I also know that God is smiling down at my son.  At almost 7, he decided to give some of his money that he got for his birthday to make sure that someone else is provided for. 

I will be honest again… I don’t have a heart for missions when it comes to going around the world.  I am more of the behind the scenes person.  I, however, have a friend who is mission focused and has a mission heart.  She has been teaching my son about missions, even if she doesn’t know that.  A year ago she did an event that Aden got to be part of missions… she taught about what some of the children and families went through.  Aden will still talk about it: the size of the house (10x10), the one meal a day of rice and beans if they are lucky, the walking barefoot and getting yucky things on their feet.  His heart was touched, He is making a difference, ARE YOU??   

What can I do? What can you do?  Well if you are like me and aren’t called to missions… maybe you are called to be a sponsor? Maybe you are called just to click a link to share awareness? Maybe you are called to click a link and pray for all the ones that you see pictured there? Maybe you are called to collect money and donate? Maybe you are called to be like my almost 7 year old and give up on what you want for a few more days and give to someone who desperately needs it?

Please take the time to click this link and to learn more about those who need to have people to love on them and that need food, healthcare and schooling!!! http://www.compassion.com/sponsor_a_child/default.htm

I choose...

The days are filled with things…

Happy things, sad things, hopeful things, overwhelming things, things we laugh about, things that we don’t know about!  Things that we can’t wait to happen and things we don’t want to happen. 

Our Lives are filled with people…

People that are hurt, that are sad, that are happy, that are faking it, that are amazing, that are gifts, that are walking a life that no one knows. 

Our Actions are real…

Our actions can hurt, destroy, lift up, encourage, love.

 

Tonight I was sitting in a room talking about if you ever have had to give something up to God? Have you even had to give up control of something?   My initial response was of course everyone has but then as I sat that I was hit with this overwhelming emotional wave.  Some people have had to give up way more than I could imagine, they have accepted the path that God gave them when they developed cancer.  I know people who gave up jobs, cars, houses and everything worldly to go around the world to teach others to read.  Honestly, I couldn’t do that!

I thought of my mother who daily got up and went to work as a nurse, who wrote medical journals for doctors, who spoke to educate other nurses, who called patients at home during the night to check on them.  I thought of being told after her almost year long battle with Brain Cancer about she would work late so those with small children could go home and be with them.  I was older and understood the whole working thing, but their children where babies, toddlers and younger children.  Family meant everything to her.  She gave her heart to being a nurse that was what she was designed to do. 

I thought about mito week, not just because of mito but I thought about all those who have an illness that is invisible.  Those that have Mitochondrial disease, Diabetes, Lupus, Arthritis, Psoriatic Arthritis, Irritable Bowel Disease just to name a handful.  Is there a purpose?  So I am back where I started. 

Our days are filled with things, Our lives are full of people, Our Actions matter!  During the time that my mother was so ill I had people that pulled up beside us and helped us, no one seem to waiver or doubt if I needed them there.  They simply were.  During Zachary’s life people came and went, some deciding they couldn’t handle it and some saying enough is enough.  But I learned one thing, I am still trying to get it right, but I learned… My Days are filled with THINGS, My Life is full of PEOPLE, and MY actions matter.

Yes you read that my things, my people, and MY actions…. MINE!!!  I have had some days when I have been upset, gloomy and hard to get along with because of the depression and overwhelming emotion.  There have been days when I did say I hate mito!  There are days when I want to go and hide.  There are days when I can say life isn’t fair but ultimately I have a lot to be thankful for.  I have an amazing husband, an amazing son, I have an amazing job where I can be me and have fun, I have amazing friends that will love on me, hug me and let me fuss.  I have smiles, joys and a lot to be thankful for.  My actions… MINE!!!!

So during Mitochondrial awareness week I choose to pray for those affected with the disease, I choose to pray for all those that are dealing with the waves of emotions, I choose to give a hug, I choose to be honest, I choose be real, I choose to forgive, I choose to forget the hurtful actions, I choose to love, I choose to be there for those who might need me.  I choose to build up and to encourage and I choose to be a friend at all times!  

So is this post about just about mito… no it isn’t! It is about what I have learned, I am responsible for only my actions and I know what my heart is designed to do.  I am the only one that can do that.  However, I learned a lot of this going through life with someone I love very dearly having mito, I still fight through my days with people that I love about and care about fighting mito.  You learn a lot when you learn that life isn’t about you.  You learn a lot when you realize that the one that you love is no longer there to walk with you.

Mito Awareness Week

MITO…

What can I say about this disease?

It is an invisible disease that robs the body’s ability to function properly.  It does NOT have to be a death sentence and those affected with it can live happy productive lives.  I know individuals that have mito that are playing baseball, have blackbelts, have college degrees, successful careers and wonderful families 

So you can see all of the tubes, medications, doctors and other things that are needed or you can see the smiles.  For us, if you ask us our mito story you are going to get a different story.  Our mito warrior died from the disease, however, not because he smiled a lot, made an impact and changed my life.  I learned more than I can ever express.  I care more about people now and I have a desire to make sure that NO one feels alone or isolated like I did and like I do even still at times. 

So what would I like you know about mito???

·        Mito is an invisible disease…. So you know that saying don’t judge a book by its cover.  Well that is what this means.  Some, well many of those with mito have very good days and look healthy.  This can change sec by sec though.  Their bodies are fighting to look good.

·        Mito affects many beyond just the person that has the diagnoses.  It affects the family, friends, coworkers and others.  It can touch every relationship in ways that you can’t even imagine.  It can bring people together but the not understanding can rip people apart as well.

·        The is no treatment and no cure for mito.  Many pray for a cure… for me I am praying for a treatment 1^st.  I had a hard time knowing that there was nothing that I could do to help my son and that all the “treatments” that we did were just temporary fixes.  As a mom you just want to know that you are helping your child that you are taking care of them.  So for me I will be praying for a treatment and then I will be praying for a cure as well. 

·        Mito can affect anyone, any age, and at any time.  You can be an infant or a senior adult.  There are adults that don’t know that they have the disease until a grandchild gets diagnosed with it.  There are adults that seem to be healthy that get hit with an illness and all of a sudden can’t walk.  Then there are those that seemingly have it since birth always struggling to maintain weight and to do all the things their peers do.

·        I would like you to know that mitochondrial disease exists, you might not be able to see it but YES it is there.  I would like you to share information and to promote awareness!

This week is one week out of many people’s lives… please pray for them, pray for awareness, pray for treatment, pray for a cure! Share the information you learn, ask questions if you need to!

a WEEK, Mitochondrial Awareness Week!

It seems like a lifetime… for one is was!

It seemed like no one understand… for one family, we did!

It seemed like there was no answer… there was one!

It seemed like we couldn’t help… for us we couldn’t

It seemed like we were okay… for one he wasn’t.

It seems like we moved on… for us, we are working on it!

 

Mito awareness week… I skipped it last year; I was hurt that my son who fought so hard lost his battle.  I was mad at the people that wanted to tell me to get over it or just deal with it.  I was mad at losing my friends who couldn’t deal with it all.  I was mad at loosing people who said they would be there but it was too close.  I was mad that people wanted to tell me that I was too sensitive and that I couldn’t be part of the mito world any more.

 So this year I am here choosing to say that I am part of this world and that you are not alone.  That mito does have some parts that suck and I am here to tell you that it wasn’t ALL bad.  Mitochondrial disease took my son’s life but my son lived his life to the fullest while he was here.  Zach had a smile that was wonderful and he loved everyone that he came into contact with.  He didn’t know he was sick.  He went to school and to church when well.  He played with his brother and loved Daddy time.  It wasn’t all bad. 

 

This week is about awareness… yes, Zachary’s story could end at his death but it isn’t.  We are choosing to spread more awareness about the disease that took his life.  He would have wanted that, we are taking things to the hospital in his name to continue his legacy. 

Mitochondrial disease: what is it?

Every cell in your body with the exception of red blood cells have a mitochondria, they are the powerhouse of the cell.  Simply put they are the batteries that allow the body to work.  Because of this mito can affect every part of the body.  It can be severe or not noticeable at all.  A person affected by mito may have periods where they are able to walk, talk and do all the things that they want to do.  Then they may also have times that their body has to make a priority of what is more important breathing or another skill.  Zachary had moments that he could walk, talk and do all the things that his little heart desired then there were days that he couldn’t even hold his head up.  We learned that Zachary’s GI tract was affected the most, which is why he needed a GJ tube (a tube going into the stomach and into the intestines from the outside of the body, it kinda looks like what you would blow a beach ball up with) and why he had to have tpn (when he was feed directly into the veins).  He had trouble growing and maintaining his weight, when he died a week shy of his 4^th birthday he weighed a little less than 17 pounds, this is smaller than most 1 year olds.  As mito progressed Zachary needed help with breathing and had to be on a bipap machine to help him breath at night and oxygen during the day.  He also needed blood transfusions and help fighting infection.   He looked good though, He laughed, we allowed him to do all the things that his heart desired.  He was worth that and we tried to make sure that he did all the “normal” 3 year old activities. 

At the moment there is no real treatment or cure for mitochondrial disease, which is heartbreaking but the truth.  Many of the things that are done to help the people with mito are temporary fixes.  Research is happening but we need more.  Awareness is happening but we need more.  MITO NEEDS A TREATMENT, IT NEEDS A CURE!!!

The severity of mitochondrial disease symptoms is different from person to person. No two people are affected the same way. The most common symptoms are:

·         Poor Growth

·         Loss of muscle coordination, muscle weakness

·         Neurological problems, seizures

·         Autism, autistic spectrum, autistic-like features

·         Visual and/or hearing problems

·         Developmental delays, learning disabilities

·         Heart, liver or kidney disease

·         Gastrointestinal disorders, severe constipation

·         Diabetes

·         Increased risk of infection

·         Thyroid and/or adrenal dysfunction

·         Autonomic dysfunction

·         Neuropsychological changes characterized by confusion, disorientation and memory loss.

How common are mitochondrial diseases?

·         About one in 4,000 children in the United States will develop mitochondrial disease by the age of 10 years.

·         One thousand to 4,000 children per year in the United Sates are born with a type of mitochondrial disease.

·         In adults, many diseases of aging have been found to have defects of mitochondrial function.

·         These include, but are not limited to, type 2 diabetes, Parkinson's disease, atherosclerotic heart disease, stroke, Alzheimer's disease, and cancer. In addition, many medicines can injure the mitochondria

 

Will you help me bring Awareness to this disease??? Will you learn about mitochondrial disease? If you don’t know please learn.  If you have questions please ask! On facebook? Please like and share http://www.facebook.com/#!/RememberingZachary  as we are choosing to honor Zachary’s legacy by providing things for Scottish Rite CHOA.  I will go in two weeks to take stuff for “BACK TO THE HOSPITAL” which is school supplies.  In February I will be collecting STICKERS, which was Zach’s favorite thing ever and take them to the hospital to brighten days!

A year...

Have you ever thought about a year? I have it is!

·         12 months of various lengths

·         365 days

·         4 seasons, unless you live in a place that the seasons just kinda all run together!

·         A measure of time that helps you tell how old you are?

 

 

I used to think that was all a year was; now I know that it is several things.  It is a gift from God.  To say this year has been easy would be a bold faced lie, in fact I would almost say that I would never ever want to repeat it but if I said that I would have to miss out on some very important things in my life.

 

A little over a year ago one of my longest friends was pregnant and she invited me to the baby shower, knowing that I might have problems with being there, she promised me I could go hide in her room and that I would be okay. She is literally the sister that I never had, we have been through everything.  The thought of not being there totally destroyed me so off I went and it was amazing.  I was beyond blessed!  Then came the birth and she let me know.  I again had a decision do I stay at home and miss out on this exciting and AMAZING part of life or do I go and love on someone who is very important to me.  I went and again I was blessed by getting to see her and her amazing little son.  A year, Today I will go and celebrate this little boy perfect in every way turn 1!!

 

I have had many years… God has blessed me with them.  I have had heartache in several of those years.  Cancer, mito, losing a job to name several of the big ones.  But I have had a lot of good things in those years… things that are not heartaches but are heartglows.  Things like weddings, births, new jobs, grades, new homes again just to name a few. 

 

One of the ones that the Years have taught me is friends.  Friendships.. The whole reason that I am writing this, I have learned life changes and based on those changes is how you develop relationships.  We have the tendency to say I will be here no matter what but then when something happens we decide to leave.   We have years that we might not be as close to people, not because of a trial or because of something that is wrong but because life just gets in the way.

 

For me I have learned in the past year:

·         Life does go on

·         That I have several friends that will be here for me NO matter what, not just in words but they actually will be here for me.

·         Life is precious and amazing

·         Even hard things and horrible things can be turned to good.  While I am hurting because of some of the things I have learned so much about me and who I want to be. 

1 year… how are you going to use it? Are you going to make a positive difference? Are you going to put someone else above you? Are you going to help?