George's Eulogy Read at His Service 2/13/2010

From the day George was conceived, I knew he was my gift from God. Hugh and I would joke about how he was our Christmas baby. We had been trying to have a baby for several months at that point and were getting very disappointed and heartbroken as each month went by and there were no positive results. Finally, on Christmas day God answered our prayers by blessing us with the gift of one of his very special children.

Many people have said they don’t know how we are getting through this, but I know God is carrying us through this very difficult time. Had the Lord asked me to be George’s mommy before giving him to us and told me that I would only have him for a short time, I still would have told him that I would gladly take him. He was such a loved little boy from the moment he took his first breath. There were even moments I would tell my mom that I thought there was something as too much love, when Joshua would hug and kiss and squeeze him as tight as he could! Despite everything, George was the happiest little baby anyone could have ever known. I will never forget his very first smile where he just melted my heart. That same very smile lit up the room the moment anyone would walk in and he caught their gaze in his beautiful big blue eyes.

George and I always had this special connection from the very beginning; it was just very different than anything I could ever explain. I would always try and explain that it was as if he was my kindred spirit. He had the softest cry, the softest skin, and the big blue eyes that we both shared. At night I would place him on my chest and walk around with him singing a song that had always touched my heart. (I sang this to the melody) For you must become as a little child as a little child come unto him, for you must become as a little child and share in the kingdom of God. No matter how fussy he was, he would calm down the moment that I did this. He knew my heart as well as I knew his.

From the beginning George did have some slight issues. Reflux was an absolute nightmare for him. He had trouble tolerating regular baby formula and also special formula. Despite the fact that doctors would tell me he was “a perfectly healthy baby” I knew in my heart differently. I knew that George had the same genetic disease that his big brothers have. Mitochondrial disease is a silent killer that has been linked to so many more common diseases such as Autism, Parkinson’s, Alzheimer’s, Systemic Lupus, Diabetes, and so many other well known diseases. Research is in its infancy and does not have enough awareness or funding to be able to even be diagnosed. For anyone who may be interested there is literature about the disease here today, I beg you to take it with you and spread the word. Many people have heard me advocate about this disease and silently would say “there she goes again” but I always remember telling them at the end of my conversation; there is no way to look at a person and tell they have Mito. The person could look totally fine one minute and be gone the next. George was living and dying proof of that.

Doctors are just not aware of this and have no idea what they are looking for in terms of diagnosis. If they even know about the disease their thoughts are severe patients in wheelchairs with traches and feeding tubes that you can look at and tell there is something wrong. So many people do not know they have it and many of the death’s that do not have answers are more than likely from Mitochondrial Disease, it is undetectable via autopsy! I ask you today to please become an advocate for your own health and that of your child. If you know something is wrong, keep seeking an answer. Ask for copies of your labs and medical records and question even slight abnormalities. Do not let people make you feel as if you are crazy. I very wise man, who diagnosed George’s big brother Joshua and has a child with this disease himself, once told me “trust your instinct, “A mother’s instinct is 99.999% always right!”

God has sent us an arm to help us get through this, as it is proven by all who have come today and showed their support in some way. I know every passing day I will yearn to hold my baby and my heart will remain forever yearning to be with him. George was such a wonderful baby and spirit that God yearned to hold him as much as I do and has called him home. I have always believed that there is a purpose to each of our lives and everything that happens is for a reason. As I was trying to breathe life into my baby I kept praying to god to give him back to me and yet in the back of my mind the words Christ said in the garden the night before he died kept playing in my mind. “Please let this cup pass from me, but thy will be done” In the hospital as Hugh held our little boy after he passed, he asked “why us”, and I said “why not us?” I remember the first days crying and wondering “why God why” as Jesus did on the cross. I wondered what I had done so wrong in my life that I deserved this, why had he kept testing my faith over and over again. My thoughts went to Job and if he could do it, I could do it. Each of those horrible things that had happened before were preparing me for this day. Had I been the person I was then, I never would have survived this and be able to stand here in front of you with the strength that I have.

George’s early departure from this earth has taught many of us to cherish each day as if it were our very last because it very well could be, just that. I will see him again in heaven and the day that I leave this earth myself, I know I will have a more glorious reunion because he is there. My job here is not yet done. We have been blessed with such wonderful children and had we been asked to choose, God knew we would never have been able to do that. George is there with my grandparents and Hugh’s father. I remember being so sad when I found out I was pregnant with him because I knew he would never have an Oma blankie. I had found a picture of my grandmother holding Richard as a baby and sobbing because George would never be able to sit on her knee like that and know the wonderful woman that she was and she would not be able to experience that joy of holding him for the first time and telling me about his perfect ears. The irony in all of this is that when I think about what he is doing in heaven, all I can picture is him sitting on her lap doing just that. I picture both my grandfather and Hugh’s dad bragging about how great he is to all of those who have gone before us. Most of all I can see my grandfathers big wide open mouth belly laugh as George just brings him so much love and happiness. I remember saying this at our very first fundraiser for Joshua…”We are all on loan from God.” The only difference is that none of us know when that loan will expire. “ Tell those that you love how much they mean to you and don’t worry about the dishes in the sink or the clothes piling up on the floor as much because it will always be there, your loved ones won’t. I know our “Georgie Boy or Poogie Woogie” is looking down on us today smiling and here celebrating his life with us as he awaits the day we join him in God’s Kingdom.

3 Weeks and Counting

It has been three very long weeks since our sweet boy earned his wings. My heart breaks every single day because I miss him so much. Dispite how much I hurt, I know he had a greater purpose here on Earth. His little life had so much meaning and as the days go by the plan begins to unfold to the plan that had been laid long before we ever knew.

Today was a tough day for me as Fridays use to be so great for me, they now mark the day I lost my baby so I can say I don't particularly look forward to them like I use to. It meant that I got to spend time for him once my hours were done an now it just makes me sad to think the day I looked forward to has become the day I dread. In time I know a lot of these feelings will subside but for now they just are hard.

We went to Costco today. It was nice to get out of the house. Most of the day I had it pretty together. Each day seems to bring a little less in terms of tears and a little more of coping on my part. It was hard when I went to Costco though. I was fine until we got to a part where they have clothing and someone had held up these one piece spring baby boy outfits. That of course just hit me very hard as I thought how I loved those and swore that was all I was going to get George. The thought that I just would never be able to do that just tugged at my heart and I found myself trying my hardest not to cry in the middle of the store. Many people have told me that I will have moments like that but this was the first out of the blue moment I have had.

Richard had a rough moment tonight. I came home from my mom's and found him on the couch. Hugh was rubbing his back and when I asked what happened, he told me that he was having a George moment. With that I sat down and hugged him and told him we would get through it all together. We then sat down and talked about how we were lucky to have George and how lucky Richard was that he would remember him and knew how much George loved him.

I think we are all just going to have these moments. Together we can get through this and it is just going to take some time for all of us. The little boys are each having their own ways of dealing. Michael has become very clingy, especially with Hugh. Josh has become very moody and cries at the drop of a hat. I wish there was a way for me to explain things to them all but I don't think that is even possible when I just don't always get it all myself. In some ways I am glad they are young and in others I wish they were older. Then again, Richard is older and it is no easier trying to help him cope.

As each day passes, I don't miss him any less, I just think I've found a way to know that I cannot look back but have to look forward. We happened to watch the movie Meet the Robbinson's tonight with the kids. They had a part that was an extra that went over that very fact. The whole thing they keep saying in the move is to keep moving forward. We have watched that movie a million times but it has never meant more to me then it does now.

Baby Steps

Today I decided I wanted to dismantal the posters from the service. I went to Walmart and picked up two photo albums that will fit in his memory box I have started to keep. It was odd being in the store. I remember when I actually liked to shop and now, I really don't want to do it at all. It is as if everyone elses lifes are not in shambles and the whole world is moving without me in it. I know in reality, that really isn't the way it is but that is how it feels when this sort of thing happens.

Hugh went to his mom's to help her, Josh and Richard were at school, and Michael went with Hugh. I went into the baby's room and began to take all the pictures off the boards. It was such a wierd experience. I organized them all and put them into their places in the photo albums I picked upt. There were left over stickers from when we made the boards so I began to put them through out the album. I don't know if I was happy or sad to be doing it but I knew I needed to do it. There is still some more to do but I had to take a break from it all for a while.

I got an email from a friend of mine who lost her daughter. In it she told me that the whole grief process could take up to two years. I have read that in the literature that has been sent to me by the SIDS foundation and the UMDF. The thought of that is just so overwhelming. I didn't even have him in my life for that long and I can't immagine being sad like this for that long. Knowing that it is a real possibility just makes me feel exhausted and overwhelmed. I am still trying to live life but right now it is the very basics. We have contiuned the other boys doc visits and school things but other then that there is not much left of me to give.

I find that most of the day I am ok until something hits me or it was a time that I spent with him. I was fine until tonight when I knew I would be playing with him. My life just now feels so empty. I could not immagine my life with him in it and now it is so empty without him. It is such a confusing feeling and a very lost feeling. After my shower I walked into his room and looked at his empty bed wishing he was still here. I ran my hand across the spot he always slept and sat there wondering what went wrong. Why was my perfect little boy gone?

The odd part is that I have a wierd sort of peace about him being gone. I know he is ok. I'm just sad for myself and I miss him terribly. I'm sad for the boys and my whole family who is now here not knowing what to do. No one in my family has ever lost a child, as many of us as there are. Very few friends of ours have lost children. This is yet again another lonely road that I have to travel with very little guidance or knowledge as to what to do or how to proceed. I cannot explain the peace that I have inside. The reason I cry is for myself and the pain that loosing him has created in my life and heart.

I find that as each day goes by, I take one more baby step towards finding a way to live life without him in it. Lord knows it will never be the life I knew before. I don't know exactly what it will entail but I know as long as I trust God to lead me it will be ok in the end. My faith remains strong dispite my lack of understanding the purpose of all of this.

Church Tonight

Tonight Hugh and I both decided to go to church tonight for the Ash Wednesday service. I really needed to go to church. There is a whole new meaning when we go there now. Some of George's ashes are there in their memorial garden. Both Hugh and I stopped and kneeled to visit with our angel. It was so odd but something I know I needed. Tears streemed down my face as I touched the ground where he was laid to rest. We stopped again once the service was over and I made the sign of the cross over his grave just as I did on his forehead when he was alive.

I lit a candle for him before the service. While I was there I just kept asking God for the strength to get through all of this. I am so greatful that I have my faith and also that Hugh and I have an awsome relationship. We have been coping with all of this together. Individually we have our moments but we know together we can overcome anything. This is the hardest thing I have ever had to do in my entire life.

This evening before church we got a call on the phone. It was the medical examiners office. He had a bunch of questions he asked me about George and our family from the SIDS foundation. I don't know why they needed all the info but we gave it to him. He was very nice. Unfortunately, he didn't know much about Mito and I spent a lot of time explaining it to him. There were tons of questions and he felt bad for asking them but we got through the whole thing. He just kept telling me I was a trooper and that he was greatful that I understood his need to ask the questions. The day George died, he was here in the house while we were at the hospital and he was taking pictures and going over the George's bed. I hope that we will get the autopsy resluts soon so we can find some sort of closure with all of this.

I have poste some pictures from the service in Saturday. You will have to scroll all the way down. His service was so beautiful, we could not have asked for anything more. You can now see for yourself how beautiful it was. Hopefully by the weekend we will have some video from the service that I can add a link to.

Signs

As hard as it has been to get up and function every day, each day has brought some sign that out little angel is still with us and makes it a little easier to get up in the morning. Yesterday, I happened to be getting ready to take a shower and as I grabbed my towel, I saw the monkey tail from his halloween costume stuck to it. The towel was on the floor in my room and Hugh said it was in a pair of sweat pants that he had on last week. I have had a rough couple of days and I am sure it was my monkey's way of letting me know he was ok.

Today in the mail we got a certificate saying someone had adopted a gorilla in Africa with the name Charles(George's middle name) in George's honor. I just about cried when I saw it. It meant so much to me and I can't even tell you why. Sometimes it is the smallest things that touch you profoundly.

The detective from our local police department came to get my statement. It was very difficult for me to do. I was able to tell him about some of my concerns with George that had bothered me and I had brought to the attention of doctors. He told me that as of now they are just waiting on toxocology reports but that could still be several more weeks. It is pure torture to have to wait when in fact I know that they will find nothing. I think the hardest part is just not knowing why. There were many things that could have happened to him due to the issues he was having. I was glad to finally have the questioning done with and something I no longer have to worry about.

Yesterday I talked to Michael's OT. She had lost a child at about a month old to some medical complications. She was a great help to let me know that what I am feeling and going through is very normal. Her son would have been 5 years old an they still celebrate his birthday and do things as a family to remember him. She understood the problems with the boys not understanding since her son was older and had some of the same issues. She said she was surprised that I was doing as well as I was and that even though time will pass, it won't be easy but we will cope better. Still 5 years later, she talks about her son and still cries when she talkes about him.

Hugh and I put the picture of George that we had at the service up on the wall. We miss him so much and I think we just need to look at him. I've been pulling his clothes out of the laundry and putting them in bags to hold onto until we decide what we want to do with them. We don't know if we want to have more kids or not but we know for sure that we are just not ready to get rid of anything of his. The two of us have always wanted a large family but this has surely made the thought of more kids difficult for us. I think we are both very gun shy with it all.

It is very early to make a decision either way but we have already been asked by many people if we plan to have more children or not. I do have to say, it is very empty around here without George. It was hard getting use to having 4 kids but now it is even harder getting use to having 3. We were in a routine and truly miss the whole baby thing. George will never be replaced by any means but we just have a hard time picturing our lives without a little one around here.

I do want to go out and get a scrapbook for all the pictures we had on the posterboards at the service. It will be a nice memento to put together and help is to remember him througout the years. There were so many awsome things about George that I miss terribly. He was such a wonderful little boy and that is what makes his loss so very difficult to deal with.

I've spent a lot of time alone sinde his service ended. I think it is time I have needed to get myself together and make some assemblance of our new life. There have been times I just sob uncontrollably and other times where I have been mad, try to come up with what if's and so many other htings that are very natural to this process. I knwo it has been hard on those around me to watch me do this because this is not typically how I operate. Right now though, this is what I need to do. I sit and pray and ask God for strength and guidance. The very thought of just getting up in the morning has become a struggle but there is that voice that tells me life goes on an I need to be a part of it. I keep replaying the line...it is then that I carried you. That is so true and I am greatful for my faith and those around me who are supporting Hugh and I every step of the way. There is nothing more difficult in a person's life then walking this path. It is unknown territory that is met with many ups and downs. Please keep us in your prayers, we can use them all.

Anxiety

4AM came early yet again. I have been having anxiety and panic attacks since all of this has transpired. The doctor gave me medication for it but it is not doing much for these sudden onset moments that I keep waking to. The events of the day he died keep replaying in my head over and over again. It is like a plauge, it starts with one thought and then turns into a million in my head.

So many what if's keep creeping into my mind although I know I cannot change them or bring him back. I wonder if I had gone into his room when I got up with Richard, would he still be here. I opted not to go in so he could stay asleep because if he heard me he would always wake up. I wanted to get done work early that day so that I could finish early and spend the rest of the night with him since I had missed so much time earlier in the week. Instead, I continued on my way to work and never did go in his room dispite the urge to check on him.

THen I go back to the moment it all fell apart and wonder had we called 911 immediately, would there have been a difference. Hugh was in such an uproar and I was trying to do CPR that we were trying to locate the phone and it was just so chaotic. I just kept saying he was dead and crying and trying to do CPR. Once we got 911 on the phone, I realized I was doing adult CPR not pediatric. I was so use to working with aults I forgot in the panic that it was totally different for children. I sat there with him in my lap rather then on the floor. Finally right before the police officer showed up, I realized my error when talking to the woman from 911.

There was a moment when I thought he was coming back to me. The air I had given him came back out but had made noise...little did I realize at that second that it was just the air hitting his vocal chords. All of these things just keep playing over and over in my mind and I have no idea how to stop it all. It is like reliving a nightmare every time you shut your eyes. The smallest thing will trigger these things and there is nothing I can do about them. My heart and head begin to race and hands begin to shake as I wonder would things have beeen different, would he be here? I know I cannot change things now but it does not stop the events from replaying themselves in my head.

I do not know what is worse, loosing him or replaying how we lost him in my mind day after day. Sometime this week I have to go to the police station to give a taped version of what had transpired that day. The very thought of it puts me into another spiral. During the day I find myself with less anxiety about it all but as soon as that time nears for me to go to sleep or the early morning comes when I got up to get Richard off to school, the nightmare is back. I pray that with time this will subside but for right now it is all to real and very hard to deal with. Lord knows, I don't wish this on my worst enemy. It is just pure torture.

Hugh and I are suppose to start grief counseling this week at a local church. I don't know how much this will help but I feel it is at least worth a shot. I've read the literature sent to us by the SIDS foundation and other groups about grief. The odd part is I know the logic in it all since I had done hospice myself as a home health aide before. I just don't know how you actually impliment anything or get past it all to move forward. The logical part does not really help the emotional part of it all. It is a lot easier to say something then it is to do it. I know many people say it doesn't get better but time helps you learn to live with it all. I hope they are right because this is worse then anything I have ever had to deal with in my life.

Another Day

Today was another tough day for me. I did spend some more time upstairs with the boys but I am just having a tough time trying to figure out how to be mommy and also get through all of my feelings right now. I'm greatful that Hugh and I griev differently because it does make it easier so I can find my alone time while he gets his much needed boy time.

In some ways it is like the baby is still here. I feel like I will hear him cry or that I need to be taking care of him. It is just hard when I realize that it isn't going to ever happen again. That makes me want to cry. I am sure that as time goes on, we will learn to handle it better but for right now it is just very difficult.

Hugh and I went to a friends house for dinner tonight. I really did not feel up to going but I went just to get out. I could not get my mind off of the baby and the awful feelings I have rolling around inside of me. We had a good time but it was just a wierd experience for me.

I find it odd that a little boy who was only 4 months old could have that big of an impact on a person. I knew him longer then most though because I carried him for 9 months. I'm not sure if that is why this is as hard as it is for me to cope with.

My mom has been trying to help in her own way. I know it is hard for her to see me so upset but I don't know how to not be upset at this point in time, he was my son. In some odd way being by myself is helping me to cope. I've always been a loner and have dealt with a lot of hard things on my own curled up in bed until I can really get a grasp on them. So many people want to help take the pain but this is just going to be one cross we will have to carry on our own.

Too Much Love by Tara Sworaski

What if your world was perfect? What if you had all you needed?
What if love was all you knew from the time your womb was seeded?
What if you had too much love? Too many hugs and kisses?
I know a boy who had this much; it’s him each of us here misses.
He watches down on us today, sitting with the Father.
He ...sees our tears, hears our cries, and asks God why we bother.
You see he cannot understand why we’re all so sad,
And really who could blame him knowing the life he had?
God carved a special place for him, right below his mommy’s chin,
Where he could sit and rest a while or take the whole world in.
Laughter was his music and smiles always danced across his face.
Happiness was all he knew before he left this place.
His cries were short, his sadness brief, for you see how could it linger,
When all it took to sooth him was a taste of Michael’s finger?
Hooked there on his bouncer was his favorite monkey toy,
Below, a puddle of drool from Slimer, Porgie, Little Man, or (my favorite) Georgie-Boy. He spent mornings with his brother, Richard, being held close and playing.
If he asked God for anything… to stop those hiccups was what he was praying.
From the get-go, he learned to share with Joshua and Michael, especially his binky.
At night, he had his bath routine with his daddy when he was stinky.
And I’m sure not a more blessed child did God put upon this land;
Perfect in each and everyway, right down to the bone spur in his hand.
One thing he hated though was therapy; you could not end it faster.
Yet, at only four months old he could cook…he was a champion pat-a-cake master. Although his time with us here on Earth was not as long as we planned,
There are many things he taught US and wants us to understand.
You see if we could have but just an ounce of the joy that filled his soul,
We’d have less tears to wipe away and our hearts would soon be whole.
He’d tell us just how much he was loved, and no kid should have it rougher.
If too much love was his lot in life, with that he’d just have to suffer.
If too many tickles and too many cuddles had to be his burden to bear,
And giggles and grins were the price that he’d pay for the time that we had to share,
A true gift to all, he was happy to pay it, no matter the price that it cost.
While the flesh is so weak, the memories and the love he gave us will never be lost!
He’ll come in your dreams, and there will be times when you know you catch his sweet smell.
You’ll remember that time that it was just you and him, and life here won’t seem just like Hell.
Though it might take a long time, and you’ll never forget,
He wants you to be happy and not be upset.
For we have no way of knowing when God will call us all home,
Or just how long we have on this Earth here together to roam.
So when you have a rough day, and you can’t go on, take his Poppie’s advice,
Try reading the Bible, kissing his picture, or talking to him would be nice.
While there are no words to combat our sorrow, no comfort to ease all our pain,
That little monkey is up there in Heaven, and I know we’ll meet someday again.
So, the next time your heart seems two sizes too big, know there’s an angel around you. With too much love in his heart, knowing you needed some; don’t be surprised that he found you.

For My Georgie Boy
(9/9/09~1/29/10)

I Cannot Immagine by My Sister Tara Sworaski

I wake up crying, salty tears streaming.
A nightmare I live, somehow not dreaming.
I ache to save you, to just stop the screaming.
Everyone asks how I am doing,
When I just want your smile, your beautiful cooing.
The pain in my heart just keeps on brewing.
I just want to hold you and kiss your sweet head,
To see you this morning awake in your bed.
I wonder why it couldn’t be me instead.
I fill with guilt because I’m losing your smell.
I don’t know how to make a home in this Hell.
I’m tired of “I’m sorry” or wishing me well.
I question God. I fill with rage.
Your book too short, ink still wet on the page.
It’s not fair that I miss seeing you age.
Yet, I somehow find peace in God’s will.
For I know I will hold you again still.
I now carry your heart with me until
We meet again.

I’m not ok. My heart is breaking.
Each night when I dream, I end up shaking.
I’m angry that God seems to be forsaking.
I miss your blue eyes and kissing your lips.
My body confused with you not on my hips.
Clutching memories of you, my mind, daily, grips.
What do I do with your clothes and toys?
What do I tell my other three boys?
How do I ever now experience joys?
How do I hurt and somehow let go?
I just want to be weak and let my feelings show!
No one understands. No one will know!
I don’t want to “live”, don’t want to wake.
I want God to take back this awful mistake.
From this sadness and pain, I can’t get a break.
I feel so empty. I am just broken.
I keep your clothes as somehow a small token.
Why God, is this what you have spoken?
I had no choice. I had no say.
It was too short when you took him away!
Could I not have an hour more to just play
With my sweet little man?

This is not like the loss of a person you knew.
Yes, we feel pain, but it’s not the same-that is true!
Feel bad for me. I don’t want to feel sorry for YOU.
I don’t want to hear how you got back on track.
Whatever you did won’t bring my son back.
When you say you understand, is it a child YOU lack??
Oh God, please come take me. Please hear my cries,
As I sit alone in his room, flooding my eyes.
Each second I heal, while a part of me dies.
I tell myself lies to make myself stronger,
When my heart aches for you for one second longer.

Life Goes On

Today has been such a difficult day. We know life must go one but I just have not figured out how to do that yet. I began the day trying to finally fold the clothing I have been avoiding for the past two weeks. We need clean laundry but I have just been piling it up on the table downstairs in the laundry room.

Georges clothes are all mixed in and I have not wanted to even touch them. I don't know what to really do with his stuff. Looking at it just makes me want to cry. I sat there and folded the clothes crying as I put his clothing in a trash bag for the time being until I figure out what to do with it. The very knowledge of the fact I will never get to dress him again and tickle him and see him giggle just breaks my heart even more. I have never felt more lost and empty in my whole life.

There is a part of me missing and I just don't know how to fill it. I know nothing will bring my baby back and the sad reality of that just makes my heart ache for him even more. His sweet smile and laugh and our moments where I just would cuddle with him are the very things I miss the most. His bedroom is loosing his smell as each day passes and that saddens me to no end.

I have been in my pajamas all day and pretty much stayed to myself with my memories of my little boy and my heart just aching for him. Every time I am around people they just want to make me feel better and I don't want to. I want to be sad and cry and feel terrible. I know it won't make it any better and it surely won't bring him back to me but I'm just so tired in so many ways. This has been the longest and worst two weeks of my life. It seems as if this is never ending. This was my worst nightmare come true.

I know there is a purpose to all of this but Lord knows I just don't understand it all right now. Putting on foot in front of the other has become such a challenge. I guess this is where my favorite poem comes into play...Footprints in the Sand. It was then that I carried you. I don't know if this pain will ever subside but I know I will always hold him in my heart since I cannot hold him in my arms.