Friday, March 30, 2012

Remembering: friends

A year ago sometime this week; Adam, Aden, Zach and I were on the north side of Atlanta.  We went for a family weekend; it was 2 days, well really an overnight.  We were basically walking distance to the hospital but we weren’t there for the hospital we were there for us.  We took the boys to have a weekend that we thought was just a fun weekend but it was life changing. 

While up there we had a nurse that LOVED Zach and who was Zach’s meet up with us.  Her and her girls were going to keep Zach in the hotel and let us take Aden out.  This was a huge deal, Zach had the lines, oxygen, tubes and we couldn’t just leave him with everyone.  Here was this nurse and her family that loved on Zach and treated him as her own.  She loved him and there was no doubt he was safe.  When they got to the hotel Aden decided I wanted to stay with the girls, this allowed Adam and I to have a very needed night together of dinner and conversation, we didn’t have to worry about getting back to the hospital or if the person caring was getting worried.  He was loved on by the girls and they accepted him as theirs.  They weren’t scared to have him in their laps, to love on them, to run with him and to play with him.  To them Zach was the cute amazing little boy that he was.  One of the girls we knew had a connection with Zach and so we knew even if the older and the younger sister weren’t quite sure we knew that she would be fantastic.  She would lay with him and watch movies and lay in his bed, she wasn’t afraid, her heart was full of love.  My eyes even now fill up with tears.  We knew we could chillax and connect.

That could have been the end of the story… between build a bear, the carousal, the gym and the pool… we had had a time to be remember but that wasn’t it.  See one of the daughters was roughly a year older that Zach (I think I never can remember anything but her smile and beautiful curls) she loved Zach, he was her friend.  I never realized till after this weekend that we worked so hard for his quality of life and for medical things to go well that he didn’t have friends.  That weekend he was a friend; they played and had a great time.  Up till Zach’s death, he talked about his friend! He talked about his E and his little E!  She came the Saturday before Zach died and I cherished the moments I saw them together, wrapped in her arms, holding hands.  He knew that he wasn’t alone!

We had this while network of truly amazing people and friends while Zach was alive, it was an honor to be involved, talk to and know every one of them.  It has been hard in these 9 ½ months though… I feel like when Zach died I lost a whole world of friends.  I no longer belong; the reason why we initially met has been removed so people hesitate.  Friends don’t want to talk about things so they don’t talk at all, friends don’t want to be a reminder of the world we were part of, or they are in the medical world and we aren’t anymore.  We are all so busy and it causes it harder to get in touch and to do things.  I miss it, I long for it

Wednesday, March 21, 2012


So I have been sitting here deep in thought most of the time I have been at the computer, not knowing what to type.  My mind goes back and forth on lots of thoughts. This journey that I am on is one that I don’t get and I don’t expect many others to have the answers yet but yet I am still sitting here wondering what the questions are? Maybe if I know the questions I will get an answer, even if it is the wrong one, an answer.  
Grief is a journey that I am realizing that effects every ounce of who you are and the ones around you.  I have been walking it wondering what I am supposed to be learning and well, I just don’t know. Here is a little bit of the lessons that I am learning, I haven’t grasped it at all, somedays I can hold my head up and know that I am doing well but on the other days I am clueless.

Grief has taught me:

·       You can be devastated and Happy at the same time.  This is one of the hardest things to learn. How can you hurt and mourn and ache for your son but be delighted that he is no longer hurting and that he is out of the bondage that he had on earth.  How can you laugh and enjoy yourself with friends and hurt because of death at the same time?  Well God somehow made us to be able to have both emotions at the same time.  We aren’t supposed to have the guilt that we feel when we are laughing during our grief journey.  However, God does allow us to mourn and grief like we have HOPE, We have HOPE.  Zach is blessed to be with Jesus and he is perfect.

·       Emotions can change rapidly.  Oh My, I feel like this is an understatement.  I have honestly had every emotion that you can think of.  Some of those emotions are hidden from the outside view and some aren’t.  However, we all have emotions that change and we can’t explain it.  I have gone from being okay, to being mad like almost in a rage, to being quite sad for reasons that I can’t tell to the outside.  We have learned as a family we sometimes hurt for the things that we can’t do anymore and so it is hard to be okay with what is going on. 

·       Asking and Needing Help Are NOT bad.  Well this one is one that I struggle with on a daily basis; I am supposed to be able to do all that I need to do without help and without all the things that I might have to ask for.  It is something that is very foreign.  It isn’t a sign of weakness.  Asking for help can be as easy as asking someone to listen to as big as you can imagine.  I am learning there are plenty of people that are willing to help in whatever way they can IF they know about it.  However, I have to get through my head that  it isn’t a knock against me or what I can do to admit that I need help!

·       Friends, true Friends, are irreplaceable and always there.  I thought that I knew this. I guess in my mind I did know it but what I am learning is that you find out who your friends are.  Some get tired of ever changing emotions, some get tired of having to be the one to give (without getting anything in return for a while), and some wig out because it is too close to their own experiences.  However there are those that decide that no matter how much time, effort, or love you require at this moment without being able to focus on them it is worth it.  I have done that for others but I am now learning how important it is. 

9 months is how long we have been on this part of our journey, we actually started grieving earlier, and we are still realizing that we still have times that we don’t understand what is swirling around us.  We know that there is NO end to this journey, that God will heal our hearts and that He will put things back together but we will always hurt and miss Zach.  We will always long to have him in our arms and in our lives.  Little things like a BUZZ Lightyear can make me smile or cry.  Having a friend have medical issues can make me stop in my tracks and fall to my knees.  Answering questions from a 6 year old child can make me fall apart.  However, I have learned one thing…. I don’t want anyone to every go through something alone.  There is no need for anyone to hurt without someone loving on them.  Grief has taught me compassion, love and endurance!

Saturday, March 17, 2012

true love

It is another day and I realize that it has been awhile since I have written…. It is one of those things that I have a ton to say but it isn’t always easy or appropriate to let the whole world know.   This week has been a huge up and down week and as high as the emotions could go was as low as those emotions have gone as well.  The emotionally swing was in full effect happy, sad, angry, rage, love, laughter and all… I never knew how I was going to feel?

One of the biggest things that I have realized this week is that FLU season is in full force, this is something that shocked me, not because of the flu but because this was something that was a major concern for me.  The hospital is full and for once I don’t have to worry about going out or being with people.  The flu is to me, this time, just like it is the normal person which is something so far out of your mind you don’t even think about it.  When a person has mitochondrial disease something like the flu could very well kill them literally, it isn’t something to play around with and this week I know of 3 children who have all landed in the hospital with the FLU.  I HATE MITO!!!!

It was very hard to see all the people that I know and that I care for deal with the flu and other things this week.  Many of them were waiting for hospital beds or for tests to come back to see the next step.  Many were trying to figure out what to do; they had gone to the ER with chest pain, only to have the ER tell them that they don’t know why there was so much pain.  I think at last count I had 3 adults all with chest pains that were in the hospital or in the ER, 1 adult that was admitted to have major surgery, 4 children who were inpatient, 3 outpatient praying that they could manage all that they needed to without going in, and 2 that were finally going to be admitted after being inpatient for a while.  All to realize that we were NOT one of them.  WE didn’t have to worry about being inpatient, having a room, having Aden somewhere, or anything… We were simply support for people that we loved. 

So last week in the midst of everything Adam and I realized how much we needed to be there for other people…One of our good friends was admitted to the hospital in preparation for triple bypass surgery.  It was one of the things that she had an episode that landed her in the hospital in Feb and it was decided that surgery was needed.  Adam has a heart for heart patients, I know it sounds funny but it is true.  He had open heart surgery at 14 and so he knows the pain, fear and issues that come along with it.  That paired with the fact that this is a good friend of ours (her and her husband) sent us in on our knees mode.  For those that don’t believe in God or haven’t known me long enough to know what that means… it means simply that we pray for the people involved (all of the parties) and we begin to do things to support the person.  All I honestly knew was that I am a medical person.  I was raised up in the hospital, I have lots of hours in the ER and NICU volunteering (over 1000 hours put together), I had Zach and all that he went through and this was honestly the 1st time that I was in tears over a surgery.  The 1st time I felt like I had to pray because if I didn’t I was going to loose it.  The love I have for her and her whole family was so strong that I couldn’t hold it together.  So on my knees I went. 

I got the call on Monday that they were going to move the surgery up… It wasn’t a matter of if I was going but who was going to take Aden to school.  I was there… There was no option, It didn’t matter if no one else wanted me there or even if they knew I was going to be there.  I HAD TO BE THERE. Adam and I went up to see her and I asked if she wanted or needed me to stay the night before surgery with her at the hospital.  After talking and me assuring her that I would be okay (the 1st time I had stayed in patient since Zach got admitted in June) and I was, she WAS and IS worth it! It was a simple way I could give back.  We got up on Tuesday morning and her family was there and I was included, we waited and waited and waited.  We later found out that the triple bypass that she was supposed to have turned out to a Quintuple bypass (YES 5).  Someone asked me how is she alive? Without asking I said God.  It is the simple truth, God had her in His lap protecting her.  I had to believe that Zach was in heaven watching over her during her struggles and during surgery.  The honor I had to be there at the hospital that day left me amazed and tired.

She is recovering and doing well, weak and tired but considering well.  I am honored to be involved and to care about others, I am praying more and more that I can be the one that God uses for all those that I know and that are in my life

Friday, March 9, 2012

There are no words

I'm sitting here totally in tears... There is nothing right, fair, or normal about a child dying. While there are Some good things about it like them no longer hurting. The tears aren't slowed, they just pour out. The hurt is so huge so vast that if you think you understand and have never lost a child, you just know the surface not the full pure experience of vastness of the pain. You don't get, it just hurts, effecting who you are, what you see and what you do.

Today a child that I have been following on line went to be with God, I have no words, it hurts so badly. There is nothing to explain the pain that is there. While I don't know this family, I know what we went through and I know what our family and friends went through and so my heart just aches. I know he was 6. I know that his family loves him, I know that he had mito but also something else, I know that he has 3 siblings and I know he will be greatly miss. I know through pictures that mito destroyed his body.

On a day I was already missing my son, on a day I am feeling quite overwhelmed with the emotions and feelings that I cant share with the world, this drops me to my knees.... Zach please hug Brent and let him know his family is here hurting, please know that I am here, your family and friends are here hurting too. Not a day goes by that I don't think of you and that I long to have your hug and your smile. Zachary, I will love you today and tomorrow even more than I can express, to infinity and beyond!!!

Wednesday, March 7, 2012

Another wave, really???

Remember those waves that I talked about a couple of weeks ago after several days maybe even several weeks those waves became huge, ugly, and rough. It was time for a storm. Time for my heart, body, and mind to be tested. Time for the waves to beat upon my heart, my body and my mind.

I will admit when this last storm hit I thought, after all I have been through, after all that we have been through we can do this.... I CAN DO THIS!!! Oh my, boy was I mistaken. Aden is a boy from the word go and I've never thought he should be anything different. He is relatively healthy minus a few GI issues, healthy. So when we found a spot on his leg, I thought, oh a bug bite. It looked irritated from from his socks but a bug bit, no big deal. Aden was blessed to go out of time with his grandparents and so we honestly thought no more of it little did we know that his little body was fighting a major war. when he returned he had three spots on his legs, they looked like allergic reactions, I marked them and gave him massive bendrayl dose and to bed he went. The next day the three spots were there plus a rash. It looked like possible infection so we took him to the doctor and she said yes to the infection and gave meds. The next day it was so much worse went to urgent care, by this time it wasn't just three dots, it was his WHOLE calf. They thought about admitting him to the hospital but they didn't, honestly I was so very thankful. Stronger meds and blood work and we went home. Over a week later, we found ourselves in the emergency room with our healthy child (the same er as the one that zach went to). The answer an allergic reaction both internal and contact. He is on steroids because his body wouldn't stop the signal of whatever he got into.

I will admit, this storm threw me for a loop... It has been physically and emotionally draining. While Adam has a new job, we are still waiting to be paid and we are still waiting for us to be eligible for insurance. All of the meds, apps, doctors, lab work, the er were all done without out us having insurance. We were blessed to have family that walked with us and helped in every way possible, friends that cared and showed it by cards, taking aden out, texts and hugs. I am still shocked at how much it all cost and how much we have to pay. I can tell you this though.... Aden is worth it! It was like one horrible, long, terrifiying flashblack... Doctors not knowing what to do, hospitals, doctors, blood everything. Again I was amazed at a child strength in this case Aden's. He is so strong and amazing. It has made me wonder how I ever did it for zach. It left me wondering how my brain worked and how I was able to sleep at all. The children walk through it like it is part of life, Aden made the best of being out of school a week, of having blood drawn and an iv placed.

What is was all for I do not know, I can't even begin to imagine (all I know is that I have to constantly remind myself this isn't a punishment) but I do know somethings that I would love to share...

1. God has always been here and never leaves. It is sometimes hard to feel Him, there are times that I don't understand His ways. In Exodus 14:14 it says "The Lord will fight for you; you only need t be still". Now I will admit I don't do well being still but I am learning that God is here and I need to chillax! God has this!

2. The diet coke fairy exists... You just have to know that this is an amazing thing for me. If you know me, then you know that I love my diet coke, I really love diet coke with lime but diet coke I love as well. Diet coke is like most people's chocolate, you can have the chocolate or the coffee, I want the diet coke. I had some show up, diet coke elves.... Diet coke fairies... Either way! I'm extremely thankful.

3. Family matters... I am not sure what we would do without family that cared. It is hard for me to type more than that because it is so true. There is nothing like family that will pray and love on you through instances that most don't what to be part of, instances that they could have ran far far away it instead they ran to it. They never stopped being part of it;helping, loving and encouraging.

4. Good friends matter... This is one thing that I am learning! God has blessed me with several new friends. One of them in particular is a Christain and while it is a hurtful thing I am blessed that she is on the same route and same journey as I am. Part of the same club that I am in, the one that no one wants to be part of but that we can't get out of. The one where no one knows what to say so we are told stupid hurtful things. All this to say part of going through things and having friends is so you know you aren't alone, part of it is being honest enough to admit that you need help, that there are things you need and things that need to be prayed for. Being willing to open up just enough to get hurt but opening up enough to be blessed as well.

5. You probably never understand why... God says that everything works to the glory of His plans, this means that while I dont get it, God does. In 2 Timothy 1:7 it says "for God did not give us a spirit of timidity but a spirit of power, of love, and of self disciple". I hold this to be my example for what I need, God gave me the stength and power and love. Love, if God loves me and is for me who can be against me? God doesnt owe me an explanation, He doesn't have to ask me or to pass it by me. God is God, I am not!

As the waves come... I don't know what is going to happen but we will, I will make it through. Hopefully being a great friend and helping others as well as being able to remember that it isn't me that is responsible for the world being okay

Friday, March 2, 2012


There is so much going on that I can’t really type an update that makes sense but I wanted to let people know that we are in fact here and still walking this journey that God has given us.  The major update is that Adam started a new job today.

For those that don’t know, we found out in December that he would be losing his job in Jan.  It has been a journey that again we didn’t want to walk.  However, He has been looking for a job and late Wednesday night we found out that he was in fact offered a position and started today.  This is an AMAZING thing, God has been here for the whole journey but I am so incredibly honored and delighted that Adam has a job.   I will be honest it wasn't an easy procress but it is one that we can see how God moves and what all has been in Gods hands

Kicking and screaming don’t exactly fit in this case… The biggest thing on this journey has been all the things that we have learned as he has been at home doing the things that I normally do.  It has been amazing to see how God has worked.  I have enjoyed having Aden and Adam doing the things that are loving and awesome…. Little things like going to the park, reading, playing, etc. things that normally don’t get done because of work.  They have gotten to have Daddy time and it is something that will be in our hearts for a long time.  Daddy time is something that means a very personal and intimate thing in this family and one that we can’t express to others, all we know is that it is something that nothing and no one can take from us.

Another huge thing on this journey has been God teaching us how to rely on Him and how there are times that we have to ask and lean on as well as accept help from others.  There are a huge number of people in our lives that don’t know what all has been going on some of it is because I don’t know how to verbalize things and I don’t know what to say or do.  God has told us in Exodus that God will fight for us and that we must stand still.  We found out what this means as the things that we need and have needed have shown up at our door.  We didn’t have to ask for them but God provided.  I am learning how to ask and how to accept gracefully what others do for us.  There are people that need to know what is going on but I haven’t been able to open up… So I am striving to be more of who I am and less of what others think that I should be, this means opening up and asking for help, well and accepting it. 

Today is a sweet day… a new job and a wonderful new chapter in our lives! I am going to be still and know that I am truly blessed