Really another day…

I wish that I could say that life has settled down some but what I am learning is that my life is crazy that things don’t always settle the way that we think that it should. I have to say that Thursday was a calm day but we had friends come into town. We have talked for over a year and I wish that I could say that we met before now but I can’t… through all the medicalness that brought us together this was the 1st time that we have met. We have laughed and laughed and laughed, I am thankful that God brought our families together.
Today however, wasn’t a great day… I needed the laughter tonight because I found myself having a hard time with all the events of today. Aden had a hard time last night and when I went in this morning I walked into his room and found a room that had highlighter green carpet. I thought it was Easter grass. I mean literally I thought. “Where did the Easter grass come from?” nope it was marker. My heart sank I mean really the day before his birthday. So today the cupcakes that were going to be made and delivered to school are still in the box and never were made. I couldn’t help it, I had my heart crushed but I couldn’t let him after the events of the night.

I can honestly say.. Laughter has been a healer. While things are hard and I don’t understand why there are illness, pain, problems, accidents, tests I can finally say that the things that come out of the events are wonderful even if shaped in pain and heartache. I never wish all the events on others but I can say that I am thankful that God is always with us and that even in the pain that He holds me in His hands

Birthday Number 2

Well, yes I said two and before this week is over you will have BIRTHDAY 3.  For now though I am going to talk about birthday two.  Birthday 2 belongs to me.  I tried my hardest to get people to forget my birthday.  I was having a hard time with it.  I am missing my mom, I am missing my son and yet I am supposed to be happy and wonderfully okay.  Birthdays are filled with thanksgiving, hugs, love and joy.  I was having a hard time with this.  However, God never does something half way… He always has a purpose.

I got Aden to school this morning and headed to an appt.  While I was on my way to the appt. I stopped and got myself a drink… joy number 1. DIET COKE!!!! Awesome! Then once home I got to eat a cupcake that was made for ME, Chocolate peanut butter, oh my… DELISH!!! So Joy number 2.  CHOCOLATE CUPCAKE, oh my!  Then I tried to get some things done, I am still in the midst of them and I was getting quite irritated so I was sitting here looking at the computer screen and I had my doorbell ring.  My amazing and awesome husband sent me gorgeous flowers.  They are perfect and wonderful.  So Joy number 3 FLOWERS, PINK FLOWERS! Yipppeeeee! Then I was sitting here and wondering what to do next… I only have an hour before Aden gets home, the time has FLOWN by and I didn’t get anything accomplished.  When my doorbell rung again.  I got a balloon, arrangement, and bear.  No idea where this one came from so I sat them down and looked at the card.  It reads “Happy Birthday Jen! WE all love you very much!!! Thinking of you and praying for you each and every day.  May your birthday be filled with joy and peace.  Hugs Your August Beach Baby Moms."  For those that don’t know this, these were sent from the ladies that were pregnant at the same time as I was pregnant with Zach and we all have babies that were born around the same time.  We experienced the same things around the same time.  I recently had to take myself off of the page that we were part of because I couldn’t handle being reminded on the daily basis’s that I don’t have Zachary any more.  This is Joy number 4 PURPLE FLOWERS but even more being remembered and thought of by those that still have their little ones.

No idea what the rest of the day holds but I have learned one thing… I am loved.  God knows that I needed to be reassured that I am here for a reason and for a purpose so a day that I didn’t think that I would enjoy and I thought would just hurt even more has turned out to be a wonderful reminder that I am here for such a time as this!

Birthday number 1

Yes this is birthday number one, as in Adam’s birthday, my awesome and amazing husband’s birthday. I was able to do something special for him and celebrate him. I had a friend make him white chocolate peanut butter cupcakes and I was able to surprise him at work with enough for his department. I took them expecting picking them up from my friend to be kinda difficult, but it was a blessing. Then I was blessed by getting to have lunch with my husband and my mother in law. What a huge blessing!
So for those that don’t know my husband let me tell you about him… He is a God Fearing, God Loving, amazing, loving, caring, and wonderful. He is an Amazing Husband and an Amazing Father. He is so amazingly smart and caring. He is gifted in being able to know the numbers and how they work and what they mean. He has taught me so much more than what I can express and he loves me no matter what which is amazing. He is supportive no matter what.

Today I get to celebrate him, without him, I would be lost. Without him my world would be darker and without him I would have far less touch that I do now. He is my All in All and my Gift from God.

Happy Birthday to you my Amazing husband

One Day at a Time…

One day at a time is all I can do. God has called me to rely on Him, because of this I don’t know what is going to happen. Why is this important or stressful? Because there is so much that I want to know. I want to know what I am supposed to be doing. If I am walking this path the way that I should be? What answers are to testing that has been done? How to help my family and friends that I am close to? The list goes on and on and all.

I have learned a ton about Grief, this is something that no one wants to know about but once you learn you realize that it is so much more involved than you could ever imagine. Grief has a ton of emotions that are involved… hurt, anger, overwhelmed, bitterness, incapable, unworthy, sadness, ashamed, alone, and many more. There are a ton of actions that are part of grief…Crying, screaming, avoidance, hitting, being shy, talking a ton, not talking at all, and many more.

The most important thing that I know is that none of it is predictable and it is all something that isn’t understood. It is like you can be fine in one sec and then the next not be okay. You can hear a song today with no problem and tomorrow it devastates you. You can be in a situation that you think that you can handle and guess what you can’t. I have learned that I am fine or will pull it together when I am with those that I trust but when I am alone or trying to get things done I get overwhelmed. I will be okay to talk and do things and then the next min have no energy to get things done and to be totally panicked.

I am learning that God doesn’t call us to walk this alone… He doesn’t call any of us to walk our lives alone. He wants us to depend on Him and He wants us to rely on His strength. In doing that He calls us to share our burdens with others and He calls us to help one another… So my goal is to reach out. My goal is to be reachable by others.

Friends…

There are times in our lives when things just seem to be unplanned and crazy. Friday a blog didn’t get written because I was dealing with going taking Aden to Scottish Rite for testing. While there I was shocked with how much anxiety it caused to be sitting there while Aden was there. I thought of several friends while there: I emailed some, Texted some, and called some. There were several that were on my mind the whole time. It had been a rough week.
Why a rough week? Well simply because I had decided that I rather isolate than talk, I rather keep it all in and suffer to myself than deal with others. Well, that afternoon my heart was shattered, When Adam called me and told me that I needed to go to his work. Once I got there he told me that a good good friend was in the hospital in ICU after being in a major car accident. They didn’t know what her injuries where, I almost couldn’t drive. My heart was shattered and broken. I honestly can’t imagine my life without her. I have several that I am close to but I have to admit, she is one that I talk to daily and think about more. She is one that I am always texting and I can’t wait to hear how her and her boys are. I heart hurts that she is there. Her family is in my heart and constantly on my mind, May she know how much she means to me.

I wanted to write this awesome blog today and pour my heart out but this is what I am going to say… this week has been filled with a ton good and bad things. A new baby of someone that I consider to be my sister, she by far is the one that I consider to be my sister more than any other. She had a perfect and precious little boy. I was delighted to see her. There is no greater joy than to see someone that you have grown up with and love have a huge blessing. I love love, love her and can’t wait to hear the joy that she has. My emotions are all over the place

May yall know that friends matter… that are close to me in distance and those that are not. Those that text and those that do not. Those that talk to me hourly and those that don’t. Those that keep me company while the rest of the world is sleeping and those that think that I am nuts. I love yall and I am thankful to have yall in my life

4 letters...

Mito… it is a four letter word. It changes life even for those that are mildly affected with it. It rocks the world of people daily. I know of parents that stay up and cry because they don’t know what to do or how to feel. I know that it has parents in tears nightly as their precious son or daughter is no longer here on earth or able to be touched, held, or helped. I know for us MITO stole a ton of things from the whole family. Adam and I had all the 1st taken away, time together and with our whole family, it took away the smile and the love of our sweet precious son. Zach lost the time that he was on earth a ton as well; he had all the normal activities stolen from him. Aden however has lost more than most.


Aden has had stole from him more than I can type. He had his time with his brother, his time with his parents, the stability of always having his family together, and the ability to believe that all is going to be okay. He has learned to be flexible and he is very compassionate. Aden also had his needs placed to the side a bit…Money, time, and energy went to Zach and all of the things that he needed and required. We knew that we would have a time that we didn’t have Zach with us but none of us thought that it would be now. Thankfully we had been preparing him for this and we had great doctors who helped us and talked to Aden like he was a real person. However, it is still hard; we are all pretty much still living sec by sec.

It has been the hardest thing… some things are super hard. Some things don’t bother me this time but the next time it floors me. I have realized that some don’t get it bit that I have to be careful not to wrap up in that moment but to remember that he is Blessed to be with God.

Every day....

I thought that writing would get easier, I thought that if I were to put some of my emotions down I would be okay, I would feel better at least. What I am finding through is that as time is going by and events of this life occur that things become harder. That it is hard to process, there is no level of emotion that will explain, so I am going to try to explain a few things.


Life hurts, there are events that we don’t understand and things that we don’t see the way they are going to work out. There are days that I can get up and go through most of my day just thinking of Zachary but able to function, then there are other days that I don’t understand but they pop up and paralyze me in this state that I can’t express or explain.

There is a whole series of things that we don’t get to see. In this case, I don’t get to see Zach’s face when he sees the cakes/cupcakes for Aden’s birthday. In a week my family will do what we call Birthday Week. Adam’s birthday (sept 27), My birthday (sept 28) and Aden’s (Oct 1) Even when Zach couldn’t eat he loved to be part of birthdays. He loved Cupcakes, he loved to see smiles, and he loved to love on others. He loved this time of the year.

Every day when I pick Aden up at the bus stop or I take Aden to go catch the bus, I remember how much Zachary LOVED the school bus, he loved school, he loved being around people.

Every time we have to go to the doctor, no matter what doctor or for what reason, I think about Zachary and the fact that we no longer have to do that, While he is blessed to be with God, my heart aches that I can’t be there to hold him and love on him.

Everyday is a struggle, one that no one seems to understand

Just a bit

Just a pic of what Zach had to do because of MITO.... He had oxygen and a double broviac.   He had TPN, Fluids, Meds given through the broviac.  TPN gave him all of his nutrition to live.  Zach had 3 pain meds and multiple other meds,  He had to have fluids to keep him hydrated and antibotics. The oxygen helped him break and have the ability to do anything.  You can't see his GJ tuble but it was there and hooked up to drain. 

You know what is so remarkable about this picture...
His SMILE!!!!!!!!!!!!!!!
Even through all that he went through he smiled. 

Zach had MITO, Mito didn't have him

Mito Awareness Week…

This is the time of the year when you will see things about mitochondrial disease. You will see the posting on what it is and how it affects. I am having a hard time because it isn’t just a week to me it is a life. It is Zachary’s Life, it was Zachary’s Life. It was something that we lived for almost 4 years and that took his life. Mito isn’t something that ever leaves our mind. Zachary had mito, mito didn’t have him. He is in Heaven now doing all the things that he couldn’t do here on earth. I strive to be involved in those lives that want me to be involved. There is no treatment and no Cure for mito. It can look very different in every case. There isn’t a standard on what happens or what it should be treated as. Each case of mito is as unique as the person that it touches.


What is Mitochondrial Disease?

• Mitochondrial disease is a chronic, genetic disorder that occurs when the mitochondria of the cell fails to produce enough energy for cell or organ function.

• The incidence about 1:3000-4000 individuals in the US. This is similar to the incidence of cystic fibrosis of caucasian births in the U.S.

• There are many forms of mitochondrial disease.

• Mitochondrial disease is inherited in a number of different ways

• Mitochondrial disease presents very differently from individual to individual.

• There may be one individual in a family or many individuals affected over a number of generations



What are the Symptoms of Mitochondrial Disease?

The severity of mitochondrial disease symptoms is different from person to person. 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.

Well it isn’t really a new journey it is just one that was put on hold for a little bit.  Aden, my almost 6 year old, has had some medical issues.  It is something that we have been dealing with for a long time but now that he is almost six we realized that it wasn’t age appropriate and he asked to go to the doctor so we took him.  I am not going to give all the details or anything but we are starting a bunch of meds for GI meds.  God has it so I am going to let him have it.

I am going to take the same view for Aden as I did for Zachary… Aden is perfectly made just the way that he is.  I will love him and cherish him and be honored to call him my son no matter the situation.  We are learning about how school goes, that is very new to us.  We are getting used to the new plans and new things  

I am having to learn some things and will be trying to reach out to a couple of people, things can be hard but overall day by day we will learn, live, and love.  God is with us, He hasn’t left us yet and he will always be here for us.

ramblings...

I have been trying since early this morning to figure out what to write, the thoughts aren’t here this morning. I have so many random thoughts so I am going to write a few, My hopes are that someone somewhere needs to hear or know that I am thinking about them or praying for them or going through a situation that is similar to them and that they aren’t alone.


• Things may be different and difficult but there are amazing and awesome things in our life. I can’t imagine Zach without his love and his spirit and his caring. Because of his spirit, we are blessed with an ALMOST 6 year old that is by far the most amazing child I know. We have struggling with him but I know that he will always be a friend, that he is flexible and that he cares. He knows what it is like to hurt and he knows what it is like to love and lost.

• Friends, those that truly matter, don’t have to know everything that is going on they have to be able to be invited in. In saying this I have several friends that are no where close to me in distance but we talk daily, we know when something is wrong, and we pray for each other. I can’t imagine my life without them.

• No matter the situation that you are going through life still happens. I am overwhelmed somewhat because while I am trying to grieve and learn to live again with my new role. Life goes on… people get sick, jobs have to be done, friends that need you, illnesses happen, problems occur. You can’t just stop and hit a pause button. Man I so wish there was a pause button.

• After you go through a situation (no matter what it is) that is important and shocking to you then you begin to question and wonder what your purpose it. If you are here for a reason, if your situations matter to you then there is no better or worse. You can’t say… what you are going through is so much worse than what I am. Truth is (and I struggle with this) is that in order for others to help they have to know. You can’t hide your issues in the deep dark part of the corner and then expect others to help you. You have to be willing to be open and transparent. That doesn’t mean that you go around and tell everyone that means that you find those that God leads to you, those that are safe and let them in on what is going on.

I have to say, things are hard, some days are far worse than others but I am not the only one walking through this life wondering how in the world I am going to make it another sec. I have firmly believed that the saying hour by hour wasn’t coined for me, for me it is literally still sec by sec. Am I proud of that? No, I would love to be further along but truth is that I am not. Life still hurts, situations still floor me and I am still walking in the path that God has placed before me. I am just His daughter striving to do all the things that God has placed forth to me. I am not alone, I am not perfect, I am not!!!

Out on a limb…

Okay so I am not sure how to write this but I think that I am not the only one dealing with this problem, so since God has called me to be honest and transparent I am going to write (hopefully it will make sense) about it here. I just hope I am not the only one that is dealing with it. I hope that this makes sense and that whatever is meant to come out of it does.

Because of all the things that have gone on and are going on I have been battling depression, grief, and anxiety. With these things are feelings and emotions that I can’t explain or share because the words just aren’t there. I am striving to be able to talk and to be around people. See although I am an extremely social person this has made it hard to be around others. It doesn’t take much to floor you when you are already dealing with so much. I thought that I would be feeling a tad better by now but bottom line I am not doing better.

So to be real and honest there are things that I am struggling with… I have had some amazing people ask me what they can do and honestly I don’t know. I know we all have birthdays coming up; I know that I have to do the food for that and I can’t wrap my head around it, it isn’t just the food it is that we are doing a birthday with part of our family missing, it is all the emotions of last year’s events surrounding Aden’s birthday.. We need encouragement, we know people are around but at 2am it is no one around but us. I know for me that since I am private I have had a hard time sharing and even till I worry about it. One major reason is because I don’t have the words to speak I don’t know what to say. I know that I am hurting but I don’t know what can be done about it, I know that I am devastated but again what can you do. One of the other reasons is that I don’t know how to ask or accept help. We are trying to focus on eating at home and dealing with things at home, this means I have to be able to get a menu today and food bought. Trying to figure out how to live again as a person, as a couple and as a family since for so long we were locked down and isolated because of having to be near medical equipment. I have been having issues with pretty much everything.

Think about the last time you went through a rough time at work; remember all the things you struggled with the frustrations of trying to get things done. The last time you were separated from the one that you love. The last time that you didn’t know what to do but knew that you had to do something. The last time that you knew you weren’t supposed to worry but since you didn’t know what to do. That is what I am going through. What can you do? I dont' know but whatever you want to do and felt let to do please do!

Friends

I have to say I have some pretty amazing friends. Throughout the past couple of years I can truly say that one of the only things that have keep us going is that we have friends that care, I mean really and honestly care. That doesn’t mean that they get it all the time, it means that they are there no matter if they understand or not. I have a friend who constantly reminds me that she has never been through this situation that she just can’t imagine, so her words are few. I have another two who love on us enough to help stand with us no matter what is going on; to be hugged on no matter what, it is so important. I had a friend that moved away and I thought that I would never head from her again, I have to say that God is so amazing, I have gotten cards from her and she have emailed and texted me. I have texted friends for hours on end when I had no intentions on bothering them, but God just had us talk and allowed me to express a little. I know that our friends need to know what is going on in order to pray for us. I know that they pray without details but they care so much those details are nice for them to be able to pray specifically


See what I am learning is that you don’t have to know the words to say… Now I know this, I tell people all the time that if they are going through something just to pour their hearts out not to worry if it doesn’t make sense or if they think that it will make sense. What I am finding is that it works the other way too? Even if I don’t have the words, even if it doesn’t make sense to try to pour my heart out, to try to communicate the pain, the hurt, the feelings I have to try. The honest truth is that we are walking this journey sec but sec and there are times that seems like too much. I can honestly say that I can’t figure out how I am supposed to make it through this but I can say that having friends that are here to support me and love on me helps a lot. I know that I am one that doesn’t judge and that people come to for prayer and support. So now I am trying to learn to be honest and transparent. However my heart is aching and I don’t understand it all.

There are no words to express my heart…. We are learning as we go!

3 months

3 months roughly 90 days… how in the world?
It seems like just yesterday we were doing all we could do to make him comfortable and to live a life full and wonderful. It seems like just yesterday I was stickering and listening to him play with playdough. It seems like just yesterday our days were full with oxygen, pumps, medications and appointments.

It seems like years since I got to see his sweet sweet smile. It seems like years since I got to hold him in my arms. It seems like years since I got to hear his cry. It seems like years since I got to see him and his daddy together. It seems like years since I have gotten to hear him and his big brother laugh. It seems like years since I had to be awake at night to give medications and to comfort him. It seems like years since I was able to help his pain.

3 months is not enough time, it isn’t enough time for any part of this road that we are on. I could say that this road is HORRIBLE, well it is but I love my son, I love my family and wouldn’t do this without any of them or without the friends that I have. So horrible no, difficult yes!!! I could say that this road is lonely, and yes it is but there are people that are trying to walk it with us. Do they totally get it no but they are loving us the same?

May the words of my mouth and the desires of my heart be that of God’s and may I be the light to others as the situation on this earth are far harder that we desire them to be

SHORT

This blog today is going to be short…

Each and every day things come into our lives and we choose how to handle them.  I get so sick of hearing this, it is true but I also know there are situations that ROCK us to our core.  Things that hurt, that devastate, that change us, that make us walk a road that we didn’t know we would be doing or have a desire to do.

Today is a day that I am going to do what my momma said, “I have nothing good to say than not to say anything” that would be me today.  I would love to be spiritual and godly but I am not God, just his daughter.  I would love to be wise but I am not I am simply learning as I go.  I would love to be okay with things but I am simply overwhelmed.  I do know that I am not alone.  I do know that it is all for God’s plan.  That He knows the plans that He has for me, That God looks for me all over the earth. 

Every time that I want to say “WHATEVER”, I realize that it isn’t my decision

Every time that I want to say “I’m done”, I realize that it isn’t my plan

Every time that I want to say “I hurt”, I realize that I am not the only one

Every time that I want to say “why”, I realize it is for God’s glory.

I don’t understand but I will cont to walk, the question will be am I alone or do I have friends. Do I have those that Truly care or are they words that are said to make things seem better

rambling

My heart is heavy, My Words are few.

The pain is real and the heartache is too.

People don’t understand why I hurt; they think it is okay that he isn’t here on earth.

Heaven is great, he can run and play but here on earth is where I wanted him to stay.

I hurt, I cry, I scream out too

He will never come back and how can I deal with that?

Others get to play with, do things with, love on the ones they love

I sit and watch and wonder why I can’t? What did I do?

In my heart I know it is good, I know what it was nothing that I did.

I pray he is never forgotten but that I can become all God wants me to be.

Broken and crying with all my heart, I come before the throne and curl up in his lap

For God loves me more than I can imagine, fill my heart and make it real.

For I need that love and I need to be still.

Hope, love, peace and comfort are His to give to me

I pray that I can be all that he called me to be

May I love on all, be that friend, my they know they are never alone

Remembering…

Today is a day when the country stops to remember all of the things that occurred 10 years ago on 9-11. I don’t mean to be selfish or harsh but I am having a hard time just remembering them. I am kinda stuck on remembering my mom and on remembering Zachary. I am stuck on remember those children that have been lost to mito this year, to the parents that have been lost to cancer, to the car accidents that occurred and took lives way too soon. They are no longer here.  All of them are missed and loved.

My mom died in 2002 and Zachary almost 3 months ago… yet I have been told to get over it, that I need to move on, that my sadness needs to be replaced with being okay. How are these two any differently? Yes, 9-11 occurred and wasn’t their faults the people that died that day were tragically ripped from their families. They went to work that morning thinking of what would be for dinner, what they were going to do the following weekend and what their family would do that night. They never made it. Those in the Towers called their families, husbands and wives, to tell them that they loved them. May God be with them, May we never forget the blood that was shed.

In the same case, this year has been hard for us. Zachary, a child that God blessed us with in 2007, was ill and continued to get ill. Adam and I had to make a decision on what the best thing was to do, why as parents was it okay to make that decision? Why is it okay for us to make a decision on bringing our sweet little boy home to die? The pain of losing a child, the pain of losing my mom is still very very real and powerful. I have been told that I am strong and honestly it is all God, every sec is a struggle. Yes, I know that it will get better but just as 9-11 is still burned in many minds 10 years later. Zachary is forever going to be in my heart and my mind so how 3 months later am I supposed to be okay. God is holding me in His lap and I know that I am going to be stronger on day but for right now my heart is broken.  I am crushed, the little things make huge differences.

We each have things that we struggle with so I am writing this to remind you to pray, to encourage, and to love on those that you know that are hurting. If you know someone that lost a loved one, be there for their hearts are hurting. It isn’t something that you can just get over and while you might be okay one sec, the next you can be floored. We need the love and the support, the encouragement of those that love us. Hold our hands and love on us for we are struggling to take each step.

Strong Enough

I often have many different thoughts in my head swirling around but today I will simply say… until I am strong enough to stand strong I will be right here! God is working with me, I am learning a lot but one of the main things that I am learning is that I can’t do it. It isn’t in me, I can’t do so much that people want to put expectations on me for. There is this song that talks about being “strong enough”… I can do all things through Christ who give me strength. But what I am learning is that God doesn’t have to take away through the pain. Sometimes those situations of pain are there and part of us to teach us something. I am not really sure what I am being taught but I know that I am becoming a stronger person. I also know that I would be lying if I didn’t say that I am so tired of being molded into that stronger person. I am tired so the time like I am not, I am going to just stand firm, holding on and realizing that it isn’t my desires and my plans but God’s.


So until God gives me that Strength I am right here, you can choose to love and support. You can choose to pray, love on, encourage or help. Or you can choose to place more judgments, more expectations and say more comments that destroy. The Choice is yours!

Hurts

There are things that happen that I can’t explain how badly they hurt. It is like something that I can describe, yesterday I got in the mail 2 letters, not just 1 but 2 letters, saying that Zachary was supposed to come in and be seen by those doctors. Well 6 months ago when Zach saw them Zach was okay. They didn’t know that Zachary had passed away. Now I am not upset that I got the letters in the least bit, I know that they didn’t know. I did think that they had been told but that is okay. What is upsetting is how much things change. It is also upsetting that it takes very little to really upset me, just think about it when your heart is upset or healing it doesn’t take much to knock you down again.


So these letters crushed me they took me back to where I was before Zach’s death, lots and lots of doctors. It made me think how much life has changed for Aden as well. He shared a room with Zachary. He changed his life for Zach, now before you think; well they all change when they have a sibling. Let me assure you Aden paid the price more than normal… Aden had his life basically put on hold. I know that last year Aden wasn’t invited to birthday parties because of Zach and I know that he wasn’t invited to play dates because parents were scared that they would have their children get sick. I know that he was sent to different people’s houses because of Zach being in the hospital, I know that he had to be extremely flexible never knowing if the plans were being changed. What I don’t know is? How to help him? How does a 5.5 year old express that he hurts? If he is hurting even an ounce of what I am hurting then he is hurting badly. Step by step, we will get through this. He is loves his brother and remember him, I pray that never changes. I am honored that he will talk to us about Zachary and he knows that it is okay to love him and miss him.

Each step for a reason… no matter how hard each step is for a reason and something that we may never understand. What I am learning now is that it is okay to hurt, it is okay to need people, it is okay to not have things together, and it is simply okay to be struggling. I am not alone and that I have people who are thinking and praying for me (us) all the time.

Emotions

I want to a second to talk about emotions…They are the things that you feel that either define you or make you. They don’t have to be reality, they don’t have to be rational, the thing is that in your brain they are there, they are how you are dealing and coping. Most of us if we are honest have emotions that we are thankful that NO ONE else knows about.

I was recently asked to take a piece of paper and write down all the emotions, feelings that I have been having. It is different, I journal and I blog but to just think about the emotions I hadn’t done. It is hard because those emotions are spinning faster than I can express around in my head. Emotions are such that we can fake it; we can walk one way but feel a totally different way. The Emotions and feelings are shaped by what we do, what we think and who we think we are.

Just a few emotions: Hurt, pain, confusion, embarrassment, feeling ashamed, lost, incapable, unworthy, cloudy, unclear, a bother, a burden, feeling silly, feeling like a failure, isolation, guilty, relief, sad, ok.

What about the other feelings? Sad, like you are not being understood, being looked at, having expectations laid on you, unsure of what to do next, unsure that you are worthy or good enough to continue to do things, Angry at everyone and everything, disbelief.

We all have them, not all of these are in my brain but ones that I know others have expressed to me. Some of the emotions are fleeting, we know that they are just there to confuse us but we know who we are. Then there are others that we work through and have to relearn the truth. Some of us are able to hide them and some people are so transparent that when you think of them you know that is an emotion or feeling that they have. Now I have learned that God has called me to be real, transparent, and honest. This means somehow the emotions and feelings that are in my head have to be able to be told to others. In Luke, we are told that even Jesus went outside and wept bitterly. If Jesus wept, then I am thinking that means that I can to, that we can too. I am praying that I can be the friend that others use to come to and to help express. See not everyone needs to know what goes on in our head. We should have safe people. Those people that we can share and not worry about, where you don’t have to worry about the emotions and the feelings that you have are being judged, they are simply listened to. I pray that I am one of those safe people.

words

Lost


One of the emotions that I feel right now, I know where I am and I know the daily things that I should be doing but it is like I forget, It is like I no longer know what the right way to do things is. I have heard several stories about feeling clouded and I get that, I know what it is like to be doing something only to realize that you have been doing something different all along.

Lost, I used to think that it was just a location thing. Oh I am lost, meaning I have no idea where I am at. I know now that lost can be a feeling that is overwhelming and powerful, it can change what you do and change who you are. Sometimes with being lost you don’t realize what you should be doing or you feel like you are doing the wrong thing. It is something that can be quite embarrassing. I mean think about it for some amount of time you had a normal and then you all of a sudden feel like you don’t know what normal is, who you are, what you should do, or if it was/is all worth it. You feel lost.

Bitterness

I used to think that this word meant an anger that made you irritated beyond mentally dealing with it… I have no idea if that makes sense. In other words, I thought that you were bitter if you we so angry that you where changed by that anger. Now I have learned that bitterness is something far different, yes it can be my old definition to but in this case I have learned that bitterness is that emotion that you have when you look at someone and are upset at them because they have or can do something. So using me, if I looked at a friend of mine who had children and I got upset and angry because she has 3 boys and I lost one of mine. If I get mad because I can’t do something but someone else can that is a form of bitterness.

Now why do I tell you these things… It is simple.. They creep up into your life. They come in and they change you and they aren’t a good thing. We all have things that we struggle with and I haven’t dealt with the bitterness as much but the Lost I have. I know that I have felt totally incapable because what I knew was gone. It isn’t just about Zach it is about everything. Aden just started kindergarten and it is a new normal. Having a school age child who is growing up is a big deal. I have never done it before and I don’t know what the right answers are or what the right things to do are

such a time

We are given people we need when we need them. I am sure if you look in your life you can think of at least one person who can tell you anything and you know that they are saying it because of and out of love. They are the ones that you tell everything too even though you know that they might tell you that you have lost your ever living mind but they are also the ones that will hold you the tightest.


It is no secret that these past couples of years have been extremely hard but through it I have learned that God has some things that are always there. I know that many would put all the references and that they will look at this and say Goodness where is it found but I want to write something that I have learned. As I felt like God spoke them to me. I am a person that needs to be touched, hugged, loved on and encouraged. I have to be reminded that what is going on has nothing to do with how much I am loved or needed. This was whispered into my ear as I was sitting protected in his lap.

God has in fact adopted me; He has chosen me and picked me. Not only did He chose me but he made me and he knew everything that I was going to do before I even thought about it. He sings over me, He protects me, He will never ever leave me, No one can take me from his hand. That I am wonderfully made, that all of my tears (ALL OF THEM) are collected he knows every one of them. God can use me even though I am made from dust, He can use me to be his mouth piece, I am his bride.

Now some of that makes sense… we all want to believe that we are worth that much. But really we are, God made us and He made us for such a time as this. I am thankful that I am alive and going through this in today’s age verses another one. I can be connected with people worldwide; I spent part of last night talking to a friend that lives in Taiwan. We are living in an age with technology means that we are never alone between cells, blackberries, laptops and desktops we can ALWAYS be connected. We are living in an age where medicine is good, tests and things that can be done and can give someone a second chance. Living for such a time as this, it isn’t by accident, we each have a purpose. A God ordained reason to be here right now with the friend that we have and the situations that we are going though

EAGLES

Isaiah 40:31 (NIV)

³¹ but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

Sometimes we can’t see something for ourselves; we need someone else to tell us, to help us, to be with us.  This morning I was told by someone that I trust that I needed to read the above verse that I needed to realize and remember who my strength is.  I know that the person was right and I fully believe this verse but I am having a hard time realizing it.  That was until I was eating with a dear friend of mine who is going through a circumstance that no child wants to be going through.  One that I went through in 2002 when my Mother was ill and died.  I started to pray for her and what came into my mind but that I am praying that she can run and not grow weary and that she will walk and not grow faint.  That she can know that she is loved and not alone. God says that we are never alone; we are never walking this path no matter what is on it alone.  We can be renewed, our strength can be renewed. 

Why is it I instantly knew it for her but that I struggle with it for me? I think it is because God has me in a place to try to rely on others, to be transparent.  Yesterday I was at church sitting with a family that has become so dear to me.  I thought about the times that I have been strong lately, not in appearance but honest strength.  In this case I could think of two things… One of them being in Adam’s arms, being held by him, assured that Adam was there beside me on this journey that I don’t understand.  The other was to be asked to sit with a friend and her family, to be next to her and to be singing and worshipping God with her.  Now for those that know me, I love to sing.  I have had a hard time singing lately but I love to sing.  With this friend, I could literally feel God reach down combine our words and remind me that I am not alone.  I was able to pull strength from her like I haven’t had in a long, long time.  In this case, I have been amazed about how many things I have realized that singing meant to me.  To be that close to her to be able to worship together, to have friends that are of the same belief mean a lot.  To know that she is here: praying for, holding my hand and loving on me.  I am thankful that I am worth that much.  I am thankful that she hopes in God and that she is helping me walk and not grow weary.  I pray that she is helped just one breath as much as she has helped me lately.

See I am learning right now that no matter the road that we are on, the path that we are on that we are there for a reason.  I am here to be the one that God needs to touch someone.  I am also the one that needs others.  We need each others, we need to pray for each other, we need to love on each other.

feelings

The pass couple of days the words have been extremely hard to come by… I am not sure why, I don’t know if I am hurting that bad, if I am that sad, or if I just can’t express it. It could be all three; actually that is what I am betting on.


This week, Aden had a rough week at school. He loves it but he has his momma in him and he loves to talk. He has his momma in him and he loves to climb and jump off even if it is in the wrong places. He is like his momma and sometimes just doesn’t want to do anything. It leaves me wondering what to do, how to treat it?

So whatever the case may be this week has been a challenge on all roads. It has been rough dealing with Aden and his actions (which are typical behaviors) and then rough dealing with me and all the emotions that I am realizing are there. Sometimes it is much easier to push the feelings to the back and to hide them, the problem with that is that when they do finally surface it isn’t easy to handle at all. The other problem with pushing them back and hiding them, not dealing with them at the moment there is a chance that when they do boil over to the surface, or explode to the surface it is harder to express why the emotions are there. So while I am struggling horribly with words anyway if I have pushed emotions to the back, which I have, then now that they are popping up I can’t express why they are there. I struggle to communicate and to express, which is hard and leaves me wondering, how do I know that I am really feeling this way if I can’t tell them (anyone) how I am feeling or why? It is just hard

it adds together

So it adds together: all the pain, all the hurt~
Whenever you have a death or a loss of any kind it brings back the hurt and the pain of anything else that you have lost before.  In my case, In 2002 I lost my mom.  I didn't loose her, God called her home.  She was blessed enough to go be with Him.  In 2011, I lost my son, Again I didn't loose him, He was blessed enough to go be with God. 
It hurts though, I have no words today but it hurts.  It is deep and hard and I am without the ability to share words.

Family

Today is the day when I decided to load the van (with the help of a friend) of all the little things that were part of Zachary. All of the things that I needed to keep Zachary. Things that made his life easier, things that I needed to keep him at home, things that I had to have just to keep him alive. I never really realize that it took over, I never saw the tubes. I never saw the pumps. I never saw anything but Zachary. Wow, sitting here just looking at all the stuff makes me wonder HOW did I miss it all. It also makes me wonder if I keep all of it will God just bless me with one more day, well I would take one more hour?


So I am sitting here looking at my other son, my little big man. I wonder how much I missed of his life. He is amazing and wonderful and more than I can imagine. However, for almost 4 years, he took a back seat and was the most flexible thing ever. My love for him is so amazing.

Then I quickly think about this awesome and amazing man, the one who has worked and poured his heart into my boys and me. The one that is at work even now when being at home in bed might be a tad easier. The one that had his heart broken daily as he had to go and leave us. The one that loves us and takes care of us. In case you don’t know I have the most amazing husband ever, he is my all and all and I love him more than I can type right here. Adam has made this journey bearable; he is the one that I adore.

I think of my inlaws who ultimately made the biggest sacrifice, they were on call 24 hours a day every day. It didn’t matter how they felt or if they were asleep when we called they jumped. They didn't have to do this, they CHOSE to do this.  They chose to walk each step with us and to love on all of us and to take a stance to be here for us no matter what it caused them.  Many talk about how their in-laws are this and that but let me tell you my in-laws are wonderful and I definitely claim them as my own. I love them dearly.

Even with the hard we have a ton of Good, I know how strong my family is, I know how wonderful it is now because of going through this. Would I choose to go through it again? I don’t think so but I wouldn’t choose to change any of it either. Know that family is God given and so important, they are here to help you have a more enriched life.

My challenge for today if I can leave you with one is to tell your family that you love them!

Hands, small and powerful

I have to say that hands are some of the most powerful things.  They let us know that people are there and that they love us.  They hold us when we don’t know what to do and they wipe our tears when they are streaming down our faces.  Today simply is to show some of those hands.  I am thankful to have hands of hope and of love around me all the time