It has been a long time since I have written and truthfully it is for many reasons.
Life got busy, Illness came in, Depression crept in and family and friends needed my attention (and I wanted and needed to give it to them). Even now I am not typing on a program that I cant spellcheck (so forgive me)
God has been bringing things to my attention, this time of the year is hard for many reasons...
+Missing love ones
+Trying to figure out how to honor family that has been with you for everything. That has helped you more than you can express
+Trying to figure out how to honor friends that God has placed in your life, ones that without them you would be lost
+Being a Servant. I have a servants heart but it is hard for me sometimes to see what I am supposed to do
This year it is a tad harder since I am also dealing with God working with my heart. Laying things down at his feet and not taking them back. I have been taking a class that is called "God thinks your scars are Beautiful" A Class I was invited to at a friends church, a friend that I would be lost without that God has given me to help me sort though and deal with my story. Not only was I invited by that friend but I recieved an email about it as well. I figured God was giving me a hint. God was touching my heart to let me know that I was not the ugly, scarred, horrible person that I often felt that I was.
See we each have a story, every day is a part of it... all the good, bad and ugly. All the things that we hide and the things that we shout from the mountain tops. Very often the hurts that we have we don't share but God uses them and no matter how painful or ugly they are they are used. God helps us through them
The things that cause our hearts to be hurt are often ones that have a lasting impact on our lives, they make scars! I am whom I am because of my past. I don't judge because of what I have been through. I tend to stick with people no matter what because I had people leave when I needed them. I don't judge when someone is dealing with sexual abuse and all of the emotions that come with it because I was sexually abused, I don't turn away when someone is in a relationship with physical abuse because I was physically abused, I don't cut down and hate when someone is dealing with psychological abuse because I have had that too.
For a very long time I have hidden everything, I am the one that everyone comes to but I don't allow myslef to deal with and sort through things.I felt embarassed, ashamed, like it was my fault, that I would be hated. However, I am learning that the situations that I have gone through, my
"scars" are important and that God uses them. This is the 1st time I can say that I have shared a whole lot of the things that have happened in my past. Now I haven't hidden it all for 10 years I have been blessed with my wonderful husband who has supported and loved me every step of the way, but I truthfully didn't handle or deal with it all. God has blessed me with a WONDERFUL friend that not only do I love dearly but has been through some of the things that I have been, Our SCARS
are similar. I was able to share and instead of the pain, hurt and anger I thought I was going to get I recieved arms WRAPPED around me and I LOVE YOU spoken. I was told that I wasn't alone and not only was I told that but I feel that now. It was freeing to know that some of the things that are so part of me didn't make her hate me. I was met at God's feet with LOVE and support.
It was a freeing and humbling experience.
I am learning to express it and so far I haven't been able to. God however is working and I can share this Christmas I have learned that Jesus came to Redeem me. I am redeemed!!! The scars and the past are a distant memory because God has picked me up and has this under control.
God is using my skills and my passions daily. He has surrounded me with a purpose and a task! One day I will annouce my scars but until I do... know that you are not alone. There is no emotion, hurt, word or situation that means that you are unworthy of love and friendship! We don't have to walk our lives alone, the scars are meant to be shared as our stories are too.
Monday, November 19, 2012
Have you ever just hit a moment and feel like I am done, everything is overwhelming , you are tired of everything happening and you want to be okay and have things settle down for a bit? There are moments that you can literally look back and wonder how in the world did I make it through all the things that happened. There are moments when you just sit down and sigh wondering how in the world you move on to the next moment. Moments when your brain just needs help wrapping around everything.
.The fact that in a few days it will be 10 years since my mother died after a yearlong hard battle with brain cancer, this hit a week after 17 months of my son fighting an almost 4 year battle with mitochondrial disease. I often look back and say how did I do school and help take care of my mother and date at the same time? I often think how did I be a wife and a mother and take care of a child that needed a full time nurse? It has taught me to Praise God in the storm, that when I need to cry to cry, to try to let others help when I need it. Often that is hard, I am not good at asking for help but I am getting better, I am getting better at realizing that God has an ultimate plan for each one of us. I have definitely learned that I have some skills that are very special. I have learned that I have important people in my live that without all of the things that have happened in my life I wouldn’t be able to touch people the way that I do.
Today I was thinking about all the things that have happened and all of the things that I need to do. Things about the blessings that I have and the things that are hard. One of the biggest things that I need to do is make flowers for Zach’s grave, I know that I don’t go enough to his grave but I know that he deserves to have flowers at his grave. What types of flowers are appropriate for a 3 year boy? What colors? However, it is hard to think that it is okay to be shopping for flowers for my 3 year olds grave! I just have to remind myself that it isn’t okay it is the ultimate plan that God had and Zach was honored enough to get be there with Him. I often wonder what they are doing in heaven. I know that they get to Praise God face to face which has to be an AMAZING thing! However, what else do they do? How much fun is it to be in Heaven? I can’t imagine. Does it feel like an everlasting overnight slumber party? Does the joy just radiate and ooze off of everyone?
Then there are all the other things that come and go and it makes everyday life interesting, fun and busy! Emotions come and go, Good and Bad!
Friday, November 16, 2012
I have written about this several times but today I am writing about it because it is so raw and so there that it is difficult. Grief is a cycle, a wave of emotions that sometimes come and hit us when we are least expecting it. Sometimes the waves are good, laughter and good thoughts. Sometimes the waves are hard and difficult.
Today I was hit by a wave of emotions after hearing a very special person who has to perform a memorial service tomorrow for a little infant; there is NO worse pain than that. I was hit by a wave of emotion by looking at how amazing Aden is becoming, a good friend who is amazingly compassionate. I was hit by a wave emotion, good and hard, realizing that Thanksgiving and Christmas will come no matter what I do and say. So I could decide to sit here, cry, and bury my head or I could choose to live each day walking with smiles. So I decided to stop and think about the holidays… why do we celebrate them? What do they mean? I thought about it and cried about it and wondered what is the next step?
Thanksgiving…. Being thankful for all of the things that we have in our lives and sometimes what we are thankful that we don’t have in our lives. Joining around a table to laugh and to celebrate being part of something, enjoying talking and looking at ads or watching football, having people that love us and that are here for us. When Adam and I first got married we decided that we would have an open door home. This meant that if someone needed a place to go, someone to talk to, or something we could provide we would try our best to do that. I have had people come because they needed my help with a crisis and we have had people come because their family wasn’t in town. The Holidays are this to us to… we strive to provide a place that everyone feels comfortable, as we have friends with a little one that they have never gotten to hold, ones who love ones are fighting over seas, ones fighting through cancer, ones that are fighting major depression, ones that are like us that are dealing with missing loved ones. We want to be there to cry on, laugh on, and take each wave of our lives. We choose to not just be there for the good times but to also be there for the hard times. I choose to remember that God always holds me in His hands, that I am his and that He sings over me! I am worth it, No matter the emotions that I have, God loves me and He will always protect me!
Christmas… The birth of Jesus! The birth of a baby that changes everything, I am sure that Mary wondered “why me?” I am sure that she was scared that she would mess things up and that she wasn’t good enough for the life that God gave her! I am sure that she was scared and worried. Jesus, a baby that was born and placed in a container that was made for feed, who was perfect and who choose to die for my sins so I could be united one day with God…for me, Jesus died for me! God gave up the ultimate sacrifice for me. He understands what it feels like to have had a son die; God turned his back on his son because of sin, what pain god must have felt? And so why am I here talking about this? It’s simple… there isn’t an emotion that God doesn’t understand and that is what I am choosing to remember today. That as I am hurting and wishing that we could continue the traditions that we had with a family of four but truth is I can’t do those… We are an earthly family of 3! Last year I was okay with doing things and this year Christmas brings me to tears. I have decided that I want to start new traditions and love on each other in ways that people looking in can’t deny.
Walking through this Holiday season I am remembering that I can choose to make a difference, I can be here for all that need me, I can love on all that I know, I can cry and I will be okay!
Thursday, November 15, 2012
One by one I have been counting my blessings… I have been thinking of all the things that I have to be thankful for that people understand or know about and then I have also been thinking about all of the things that people don’t know about. There are things that no matter how silly they are we can be thankful for them.
I am thankful for text simply because it allows me to be able to stay connected when I am forever away from people who know and understand my heart. Texting first thing in the morning to say I am praying for you or that I love you. Texting late at night because I can’t sleep or because someone needs to talk. Staying connected with each other while in the doctor’s office, work or traveling.
I am thankful for the dinner table or a table that we gather around for a meal because without it the conversations and the laughs that we have will be far different. I cherish the times that I have had family and friends around the table and we get to laugh, talk and enjoy. There is rarely a better feeling than that!
I am thankful for friends that guide my heart into things that I would have never known about without them. One of the things in particular is Compassion International. I would have never known that I could make a difference without a friend introducing me to it. I would never be able to understand families of 8 living on less than $2.00 a month.
Then there are the little things that just make me happy… glitter, butterflies, fingernail polish, colorful toenails, twix bars, seeing a friend, cupcakes, tea from QT, tutus and smiles!
Monday, November 5, 2012
I haven’t done as much writing as I would like lately… I have to say this is because I have been sick, Adam has been sick, I have had things come up that took my attention and that by the end of the day I was totally exhausted.
November is a month that we very often think about all the things that we are thankful for… I just got finished reading a book that is 1000 gifts, this book talks about being thankful for everything, it was very much written to explain how if we look at things as gifts we will realize how blessed we are. So for now I am starting of listing the one item a day but I am finding myself being thankful for things that I know others won’t understand.
Thankful for family, Thankful for the sun and for the clouds, Thankful for texting, Thankful for tears, thankful that the tears end, thankful for endings, thankful for cupcakes, Thankful for legos, thankful for stickers, thankful for glitter, thankful for peace, thankful for friends, thankful for well you get the point…. I am also realizing that I am also thankful that I was given a huge support group that I can’t imagine life without.
I am going to try to be thankful for the little things… who is with me? Anyone willing to step out with me and say that they often will complain and fuss verses seeing all of the blessings that we have been given. How many gifts/blessings can you be thankful for today?
Saturday, October 27, 2012
Each day I wake up at different times and for different lengths of time… sometimes it is at 3am for about 30mins, sometimes it is 2am for an hour, other times it is a time that I have to stay up for the rest of the day. I very often though have the urging from God to pray for things when I wake up. Sometimes it is for people or for places, sometimes it is for events that I know or for groups. I often text the people that I am thinking of if I know that it won’t wake them up or if I know that they are up and one day someone asked me why I pray for them. So I thought that I would take a sec and I would write about prayer.
Prayer has many definitions and some of them are MORE scholarly that others but I am going to tell you my definition. For me PRAYER is talking to God, asking God to protect, guide, help, love on those that are important to me and my family.
I pray for:
· My Husband, that he will have a good day and that he will know that he is very much loved, for the traffic that he is going to face when he drives an hour to work. For the things that he looks at that runs circles around my brain when he tells me what all he does. That he gets enough to eat at lunch and that he knows how special I think he is how much I love him, how thankful I am to be married to him!
· My family, those that are by marriage or by blood and those that are selected by that deep relationship that God has blessed me with. I pray that they have a good day that classes go well, that work goes well, that emotionally they are hanging in and that they are safe in all that they do. That health is good and that if they are going through a crisis that they have the right people that can help them walk through it all.
· Teachers, not just the teachers that are at my school but ALL teachers. I pray specifically for the teachers that are touching my son’s life. That they will have patience when they need it, that they will be able to minister to them, that they will love on Aden if and when he needs it. That they will have extra love for all the situations that they are involved in.
· Schools, not just HOPE Academy but ALL schools. I pray specifically for HOPE academy for the children that are there, for all of the illnesses, losses, grades, and things that are brought into the school. Situations that I don’t know about. Every grade, every student, everything that happens. I pray for the chapels and for the Bible studies that they get exposed, that they will listen and that God will touch their hearts.
· Friends, I pray for those that I see every day that I know what specifically to pray for; losses, family situations, health, money issues, stresses. I pray generally for health and for self confidence, self worth that is found in God and not in the world. I pray for the ability to share what needs to be shared and that they will know that they are never alone. I pray that they will know in their hearts that I am there for them no matter what. I pray for those that I don’t see every day but mean the world to me. I pray for those that I wish lived closer, those that I pray that I see more. I pray for those that are battling things that I can’t even begin to imagine.
· Church, I pray for the churches that I am involved in. Lighthouse Baptist Church; the ones that have provided the building that HOPE academy is in. The pastor that loves on our students by doing chapel and smiles when he sees our students in the halls. For the love and compassion that they show us by allowing us to be a school in their building. Eagles Landing 1st Baptist, where Aden and I go on Wednesdays night that they will continue to share God’s will and God’s love to us. Tara Baptist Church, My home church, where my husband teaches Sunday school, where I have family and friends, that has walked through some dark times of my life with me. I pray that they all can Share God’s love and His message. That I am doing all that God calls me to do there.
· I pray for other things that come up, events of the day, stories that I have heard hearts that I know.
If you are one of those people and I have your number to text or on facebook with you, I will take a sec and let you know that I pray. I hope that if there is something going on in your life that you let me know. I firmly believe we are not made to walk this life by ourselves, hidden in a closet somewhere, sometimes it is easier for people to not know what is going on. I pray that God touches my heart and allows me to be all that those around me need me to be!
Thursday, October 25, 2012
More and more I feel like I am starting things off but I am realizing as I get older that there are just times that you realize things…
There are just times that you realize:
· A touch is sometimes the one thing that helps someone make it another moment
· A smile can make a difference
· A laugh can change your whole mood
· A thought about a friend might mean that they need you
· A mood is contagious
· Sometimes you just aren’t okay
· It’s okay to not be okay
· There are times that when you help someone you won’t have the words
· There are some people that you want to be there when the walls come crashing down even when you don’t want to have to be weak in front of them… when you are secretly wishing they will go home and be there at the same time.
This came to my mind this week as I have had two events that have reinforced them in my heart…
The 1st one is from a friend who had a book given to her and she started to read it and after reading it for a bit, she knew in her heart it wasn’t time for her to read the book but she thought of me and my heart. The questions that secretly I have been asking her and myself, struggling to find the answers but asking them still, struggling to find a reason. She made it one chapter and brought it to me, I took the book home and after reading the second chapter I sent her a message.. See in the book the author writes something that I very well could have penned. I have felt the same feelings, thought the same thoughts and cried almost the same tears. Secretly though, here this author wrote them for the whole world to know… for me to know, for a friend to feel the prompting of God to lend me a book that I didn’t ask for. Needless to say, 3 days later she found the book on her desk returned to her waiting for the day that her heart is ready to read it.
The 2nd one is from another friend, well actually two. I went to church last night and while the class was going on I had a friend on each side me. We were listening and taking notes of the references that were being given. Every few minutes the speakers would say something and the one on the right would tickle my ribs, and then a few minutes later the friend on my left would kick my leg. God knew I needed to hear from the speakers but he also knew that I needed to have people near me, I needed the touch, I needed them to remind me that I wasn’t alone. While we were closing in prayer one of them reached over and firmly held my hand. Instantly I knew that at that moment, God was healing a bit of me… the tickling, the kicking, the smiles, the eye rolls, the holding hands and the prayers. God was touching me and healing just a little bit of my heart. I never thought that I would have people in my life like the two that were with me at the table and yet not only do I have them in my life but God is using them to move me to the next step in my journey.
See these are two things to remind me that we aren’t alone; we are not meant to walk this path, this life by ourselves. We are called to be friends, to love at all time, to be there no matter what, to love on, to help and to pick up. To listen to friends when they say things that are from their hearts, to love them when they think you are going to hate you for it. I want to be that friend; I want to be the one that is known as being nonjudgmental, loving and caring. I want to be there, I want to walk the path with my friends holding their hands, praying for them and loving on them. Why because I know how important it is. I know that we need it and it is so very important. That touch matters that a smile matters, a pm/text matters, a letter matters, being there matters
Tuesday, October 23, 2012
I have taken a little time from writing not because I wanted to but because honestly my mind and heart couldn’t do it. I have tried to hold it all together for all of the assorted people in my life and worked on getting it together for me. So I am sitting here thinking about this again, about how much I miss writing. About how I wonder if anyone missed the posts that I have made.
I have had people tell me that my medical journey is over since we no longer have Zachary on earth, while Zach’s journey is over. My family’s journey is not… we have 3 other people in this family; we have extended family that matters and close friends that matter. I mention this because we have been walking in and out of the medical world; I am learning it is quite different than what I had with Zach. Zachary was blessed with some of the most caring doctors and his story wasn’t the norm on what had to be done. I developed friendships because of Zachary which have helped me walk this new journey. Friendships that helped connect me with doctors that I could trust and that if they said don’t worry it calmed my heart. I am learning things now that I never had to with Zachary but I am understanding right now how hard it must have been for him to SMILE and to be the amazing little boy that he was. Friendship developed through my grief but now stand strong through the normal waves of life.
There are so many things that effect us and yet we just keep walking, we keep working with the waves. There are many people that are impacted by invisible diseases, diseases that you can’t tell that the person has from the outside of the body, they don’t have to lose their lives to them like Zachary did, and they may simply lose out on some of the other things in lives. Those diseases can cause you to lose out on family time, work, recreational time, and/or dates with friends. They may affect how you feel about yourselves and often will affect the moods that you have. Why do I mention this? Well it is simple; I as well as some of the people I am close to have invisible diseases. They have different names… psoriatic arthritis, rheumatoid arthritis, fibromyalgia, chron’s disease, abdominal migraines, metabolic diseases, depression, allergies, migraines, diabetes… I know that there are many other diseases. However, with these invisible diseases come along pain and sufferings that we often face in silence.
Now that I have mentioned this I can say why I mention it… I am learning that I am the only one that can determine how I am going to listen to my body. The standards and normal that I was used to can vary hugely based on how my body is doing. There are times when I can’t get up to do things and while I really want to I can’t. There are times when I want to be able to talk with a family member but work has taken all of her strength from her. There are emotions that I have to realize aren’t truths, they aren’t based in fact but in emotions that because of the daily waves that are hard to deal with.
My Goal is to learn how to deal with things… as the waves of life come and I get knocked down to remember that I are worth it, that I am alone, but also to learn and to remember that I have been really blessed by the people that I have around me, that love on me and care about me.
Tuesday, October 9, 2012
To the girl down the hall that doesn’t see how smart she is. There is always hope, there is always a reason. You are in fact smart enough; you are bright enough, your thoughts matter, your actions matter! Without you in this world, things wouldn’t be the same! We would laugh less and cry more. It may take you longer to get things and it may take a lot of work but it doesn’t make you any less important or smart!
To the friend who doesn’t know what to say. The words don’t matter, it what is in the heart, the actions that take place and the amount of true, real concern there is. A word might be nice but it doesn’t have to be real or true, that action tells us the true meaning. Being there always and hanging on when the rest of the world gives up matters. It is also important that you share what your heart is feeling you don’t have to walk it alone . Open up, try to say something, it is hard but it is worth it
To the one that doesn’t know what to do next, who thinks they can’t do another thing! Yes you can, baby steps, any movement is worth it. Sometimes we don’t know what we are doing but we are equipped to do what God has called us to do. We are strong enough, YOU are strong enough!!!
To the one that is barely making one step in front of the other. To the one that wonders what is going to happen next. Keep Going, keep trying, you are moving more than you know, you are making a difference you are touching someone in a way that you will never know. However, each little step is important. Things are not always bad and God can use the bad things for His glory! You are an important part of the Masters plan.
To the one that no longer sees how things are going to be okay. Please know that you are not alone and that no matter what the actions are and no matter what happens knows that you will never be alone. It may take time but it will be worth it.
To the one that doesn’t think that they matter. There are no words that I can express to let you know how much you do matter. The things that you do and the things that you are part of help more people that you can imagine, you are smart, talented, amazing. You matter, repeat after me, you matter!
To the one that hesitates to say anything to anyone. Please say something; please know that it is worth it and that you are worth it. You are not alone in your battle but until you open to share and expose yourself you will never know that there are more people walking the path that you are. You are so important to touch someone that needs to know that they aren’t alone. You aren’t going to scare everyone away.
To the one that thinks that they are alone, you are NEVER alone, YOU ARE IMPORTANT! YOU MATTER!!! You matter to someone more than you ever will know, there is someone that needs to talk to you, needs to laugh with you, needs to be your friend, needs to be blessed by you!
Sunday, October 7, 2012
I am tired, it is a good tired but I am tired, unable to wrap my mind around it all but thankful that I have God in my life with joy, happiness, friends and busy-ness.
I am learning about forgiveness, not for the rest of the world but for me… how do you figure yourself? Have you ever tried? Have you ever done something not quite how you wanted to? Have you ever failed? Have you ever done something in a different manor than you wanted to? Have you ever just simply messed up? Have you ever REALLY messed up?
If we are honest with ourselves, if we honestly look at our lives we will find out that we can answer YES to all of the above questions but we can also answer YES to more that I haven’t mentioned. I struggle with forgiving myself for things that I have done in my past. I struggle to forgive myself for not trying harder in relationships that I can never have back. I struggle to forgive myself for getting tired, for getting overwhelmed, for just needing a break.
Are any of these things that are horrible or things that change who I am no? Unless you want to consider the fact that the experiences that I have been in, the things that I have had to do, the things that have gone “wrong”, the things that I struggle with are simply things that just make me who I am. Every situation good bad or both are from God. There is nothing that we can do that can pull us away from God, from Jesus, once you have a personal relationship with God accepting Jesus into your heart, nothing can change that. Nothing I can do, nothing you can do can take you away from God.
I struggle though; I struggle to build the confidence to talk to new people, to open up to build deep relationships. I struggle because I have people that I get to talk to and spent a little time with that I deeply want to get to know more and spent more time. I struggle knowing that there are children and families that I want to touch and make a difference I and I can’t because I just don’t know what to do or what to say. I struggle because I want to be a good wife, a good mother, and a good friend. I struggle because I don’t want to judged or laughed at. I struggle with knowing who I can share with and what I need to share.
One step at a time. We are never alone. Our story makes us stronger!.
Thursday, October 4, 2012
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!!!
Tuesday, September 25, 2012
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!
Monday, September 24, 2012
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
Wednesday, September 19, 2012
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.
Tuesday, September 18, 2012
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 1st. 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!
Sunday, September 16, 2012
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 4th 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
· 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!