Joshua's 5th Birthday

Today was Josh's big day! He made it to 5! That was such a monumental event since that was what Dr. Hirsch always told me to get to with him/Mito kids. The very thought that you didn't make it to 5 months just makes my heart want to cry. I am grateful for him and the time we had with you but I really hate this disease and the havoc and lack of knowledge that comes with it. Every day I pray that something will happen so that other parents don't have to know the pain I live every day. Before you were gone I worried all the time that I would wake up to one of you dead and my worst nightmare came true that morning you left us.

I kept myself busy most of the day in the kitchen and running around. It came to presents and I had to give that job to daddy. The thought that you weren't there to be helping Josh open them just broke my heart and I couldn't do it no matter how bad I wanted to. He misses you so much and it just hurts more to know how much he misses you and how I can't fix that hole in his heart. God did he love you and still does! He was so mad at God the other day, he started waving his fist in the air telling him that he missed you and that he was not happy he took you but that he better take care of you. Every part of me wanted to cry but boy could we all learn a lesson from him. I think in many ways that is why he tells us we must come as child to Him.

The day went well and everyone had a good time. I was so proud of your big brother for wanting his party to be something special. You had a party hat on your urn...he had to make sure you were part of the day..and also a lei in front of it and two on your picture! I really don't know what I would do without him sometimes, in many ways it is your brothers that keep me going. Every day they teach me something new. I don't know many 5 year olds that will give up their birthday gifts(although people did bring him some) in order to honor their little brother's memory. I don't know if he really understood what he was really doing but I know he was so excited to do it. We got a bag of donations and some money to send to Comfort Zone to help other kids who have lost family members. Josh can't wait until he is old enough to go!

Once everyone left, I took a shower and just cried over the fact that you were not here today. It was so hard for me on so many levels. I do however know that life goes on and that I will somehow make it through every day until my job is done. It doesn't mean that it will be easy and there will not be a day that doesn't go by where I don't miss you. On so many levels you have changed my life. Asked to do it all again and know what I know now and how hard and terrible it would be to live life after you were gone, I would still tell God I would take you:o) I love you that much and would walk the world for you even though you were here briefly. Please watch over your big brothers they love you and miss you...you are forever in their hearts too.

Moments

Wait
By Russell Kelfer

Desperately, helplessly, longingly, I cried;
Quietly, patiently, lovingly, God replied.
I pleaded and I wept for a clue to my fate . . .
And the Master so gently said, "Wait."

"Wait? you say wait?" my indignant reply.
"Lord, I need answers, I need to know why!
Is your hand shortened? Or have you not heard?
By faith I have asked, and I'm claiming your Word.

"My future and all to which I relate
Hangs in the balance, and you tell me to wait?
I'm needing a 'yes', a go-ahead sign,
Or even a 'no' to which I can resign.

"You promised, dear Lord, that if we believe,
We need but to ask, and we shall receive.
And Lord I've been asking, and this is my cry:
I'm weary of asking! I need a reply."

Then quietly, softly, I learned of my fate,
As my Master replied again, "Wait."
So I slumped in my chair, defeated and taut,
And grumbled to God, "So, I'm waiting for what?"

He seemed then to kneel, and His eyes met with mine . . .
and He tenderly said, "I could give you a sign.
I could shake the heavens and darken the sun.
I could raise the dead and cause mountains to run.

"I could give all you seek and pleased you would be.
You'd have what you want, but you wouldn't know Me.
You'd not know the depth of my love for each saint.
You'd not know the power that I give to the faint.

"You'd not learn to see through clouds of despair;
You'd not learn to trust just by knowing I'm there.
You'd not know the joy of resting in Me
When darkness and silence are all you can see.

"You'd never experience the fullness of love
When the peace of My spirit descends like a dove.
You would know that I give, and I save, for a start,
But you'd not know the depth of the beat of My heart.

"The glow of my comfort late into the night,
The faith that I give when you walk without sight.
The depth that's beyond getting just what you ask
From an infinite God who makes what you have last.

"You'd never know, should your pain quickly flee,
What it means that My grace is sufficient for thee.
Yes, your dearest dreams overnight would come true,
But, oh, the loss, if you missed what I'm doing in you.

"So, be silent, my child, and in time you will see
That the greatest of gifts is to truly know me.
And though oft My answers seem terribly late,
My most precious answer of all is still . . . Wait."

I've been spending most of the day working on Joshua's party. For whatever reason, it has been a hard day for me. I've found myself crying throughout the entire day. With all my running around, I drove past the Farm Fair and the police car was there. All of a sudden, my mind switched back to that horrible day and all I could see in my mind was the officer who responded taking over CPR on my little boy. How in the world was my little man playing and laughing the night before and in a few short hours he walked out of our lives here on Earth forever. I was thinking of how he used to sit on my laugh and how I thought he was getting so big. What would he look like if he was still here? He would be into everything and almost turning a year old. I miss him so much and can't believe that this week he will be gone for 6 months. The pain is greater now then the day he left. Never in my life did I ever anticipate this sort of life and the crazy feelings that come out of no where that send you on a downward spiral when things were just fine.

I woke up early this morning after a crazy dream I had. It just made me so sad and happy at the same time. My aunt had posted a question on Facebook last night asking if she should go to Disney. That was the last and only family vacation we took with George. That simple question spurred of a dream that was just so very real to me. We were back there and he was alive. I as holding him and carrying him in that Moby Wrap just like I did when we were in Disney. Suddenly he was gone and there I was in the happiest place on Earth, the saddest person there. What a sad and lonely feeling leaving so many mixed feelings. I woke up to realize that my dream as true and he was gone. My heart was beating a mile a minute and it was 3am and I just couldn't go back to sleep.

All that said, these are the moments that I find my place in God's arms. I don't know where I would be without my faith and the ability to just know he understands and carries me through moments like these. He understands my pain and hurt and in his own way brings peace and comfort even though it does not take the pain away. I've been listening to my christian cd's and find much comfort in them. Hugh has many of these moments too but due to his lack of friends and support system, he will be starting therapy on Tuesday. I have a lot of mom's that I talk to online and a few people that do understand my feelings and I have my own therapy when I go for bible study at church. I think it will be good for Hugh to finally have someone besides me to talk to. In the end we will always miss him and always have part of us missing no matter how much therapy we get or time goes by...nothing changes the fact that he is dead and with him went our hopes and dreams for his future as part of ours. Unfortunately, we aren't the first parents to go through this and won't be the last but I am so grateful that we have one another.

I don't understand God's plan for us but I trust him completely and know we are part of his greater plan. That's what faith is all about.

Patch

Well, I posted the other day how upset I was when I came across the hole my husband put in the wall the day George died. It had also upset me to see the lonely flower stem that was suppose to be turned into a flower with my little boys hand-prints. After much thought and contemplation, I could not bear to leave that stem empty but could not put the new baby's hands there since it was meant for George. I also could not even think of fixing the whole just for the weird sort of symbolism it happens to have.

I went online and started to look for something large enough to cover up the hole without really having to get rid of it. Low and behold, a few minutes into my search I found exactly what I was looking for...it was perfect! I still hadn't figured out the flower part but I was not worried and just ordered the piece figuring the rest would come in time. Today it came in. I am posting a picture of it. The little boys and I put it up and you would never know unless you happen to really know there is a hole behind it. As I was working on that, it came to me what to do with the flower stem.

Curious George now covers the hole and is being carried away by balloons from the world below...how fitting! I sat there crying when I saw it since I knew it was just perfect. As I looked to place it I had to move a few of the stickers that already graced the wall. The one that was dead center below the hole happened to be a dragon fly! I moved it and put it where his little hand-prints should be. For any of you who don't know the story behind the dragonfly and its symbolism with those who have left us, I am posting the story below in a brief summary.

"In the bottom of an old pond lived some grubs who could not understand why none of their group ever came back after crawling up the lily stems to the top of the water. They promised each other that the next one who was called to make the upward climb would return and tell what had happened to him. Soon one of them felt an urgent impulse to seek the surface; he rested himself on the top of a lily pad and went through a glorious transformation which made him a dragonfly with beautiful wings. In vain he tried to keep his promise. Flying back and forth over the pond, he peered down at his friends below. Then he realized that even if they could see him they would not recognize such a radiant creature as one of their number.
The fact that we cannot see our friends or communicate with them after the transformation which we call death is no proof that they cease to exist."

Miss You

Missing you a lot this morning. Wishing I was getting up to see you and play with you like I used to do. Every morning I would wake and could not wait to see your smiling little face. You would always get so excited when you saw me and knew my voice like no one else ever did. I miss your laugh and just holding you close. I miss your little head on my chest tucked under my chin. I miss singing your song to you...I have not sung it since you left me, it was yours only. I miss walking in your room and it smelling like you, all of your things have lost that smell and it just breaks my heart. What I would not give to have you here with me and to hold you again. I love you more than you will ever know. Part of my heart is there with you. I cannot wait to be with you again.

"THERE WILL BE A DAY" (Official)

Bad Memories

What I would not give to be able to forget those horrible moments of that morning! Ironically another mom who's son passed away over a year ago, posted this morning that she has been having a hard time with the waves of panic and terrible memories that come with loosing your child in this manner. I remember an old friend of mine who had lost her son to Mito before George passed. She called me the morning he died and told me that some day I would be able to look at George's pictures and not cry. Somehow I find that hard to ever believe because of the manner in which he died and the trauma that came with it. All I can ever see is his lifeless body in my arms. Eventually it always moves to ones when he was happy and alive but they just make me sad because the night before he was fine and the next day he as gone.

I was pretty good most of the day...until tonight. Hugh and I have been working on getting the house ready for Joshua's 5th birthday party this coming weekend. Hugh happened to move a few storage containers we had in the hallway. Behind them was a huge reminder of that morning. Hugh was so distraught and lost he punched a hole in the wall. There as the hole behind the items there reminding me of that horrible day and then it was like one of those moments in a movie where all the memories come flooding back. It saddened me but the thing that made me loose it and just break down crying was looking at the empty stem painted on the wall.

I had done some painting on the walls in the hallway when I was pregnant with George. In the corner is a big tree, grass at the bottom, and stickers of butterflies, dragonflies, and ladybugs all over the walls. At the bottom I had painted flower stems with leaves and had traced each of the boys hands onto a sponge to use as a stencils. I used those to create flowers and the petals...it as just so adorable. When I did it, I left a spot for George's hand-prints when he got old enough to keep his little hands open enough for me to trace them. Seeing it empty just made my heart break all over again. The sadness just washed over me as I was reminded he died and that he would never fill that spot on my wall that I had left for him.

I told Hugh I am going to look for either a large dragonfly sticker or a large monkey sticker to add to the mural to cover up the hole! It is weird because part of me feels the need to leave it there and another part of me wants it gone. I cannot tell you the insane and odd feelings that come with this sort of loss. It definitely falls into the Post Traumatic Stress Disorder category and I can completely understand why and the reason it is hard for people to move forward with something tragic like this happening.

Yesterday Hugh and I got to go out for the first time in what has seemed like forever. We went to see Fiddler on the Roof in Philly at the Walnut Street Theater. It was good but best of all it was nice to just get out although it is hard to not find yourself talking about the kids or any of that stuff. We did however discuss a phone call I had gotten from the deacon at our church earlier in the morning.

She had expressed her concern for Hugh and his coping with George's loss. It has apparently been bothering her for some time no. She knows he has no one to really be there and with his low self esteem and many other issues from his past along with the unemployment issues she really worried for him and our family. Of course not knowing how he would take it she came to me and gave me the phone number of a counseling place that works on a sliding scale. With his family history of alcoholism on both sides of his family and all that has transpired with the loss of his dad and George, she was concerned for him. She knows that life herself since her husband had an alcohol addiction that rocked the core of her on family.

He of course has not been drinking nor has he contemplated it but understood her concern. The past few weeks have just been very hard across the board for many reasons, none we were ever prepared for. He has always been afraid of drinking since his father was an alcoholic and he watched it tear his family apart. I too understand since both of my grandparents were alcoholics too. It is something we have a higher chance of happening but are both so afraid of we just avoid the stuff all together. He agreed to try counseling out and we are hoping that in a few weeks we can go to a Compassionate Friends meeting. It is a group for parents/grandparents/siblings of children who have died. We have been meaning to go but it is only once a month and we always forget about it until after. I hope that he can find some sort of comfort in either group.

If there is anything that I would wish for, it would be for all of the bad memories to be gone. It of course is not going to happen in my lifetime so I am going to have to just live with it all unfortunately. Please keep us in your prayers but also all the other parents who are struggling right now in the same manner that we are.