3 Months/13 Weeks

Yesterday was 3 months to the day that our little boy earned his wings. Today it is 13 weeks exactly. Moments like these are the hard things. They make you think of what you lost and how much you miss it. I think about how my life was turned upside down and how it has very little reseblance of the life I once knew. This new life is a difficult one filled with many ups and downs and so many mixed up feelings. It doesn't mean it is bad, it is just different and I am fumbling my way through learning to walk all over again just like a baby learns.

I spent the day at the genetics office with Michael. There are a whole host of things that we will be looking at. She did validate all of my concerns and I didn't even have to bring them up. It was nice to have someone else go over my childrens records with a fine tooth comb like I do and not write off the small stuff. There are a host of labs that Michael will have to have done but he has not had labs done in quite sometime and this one is comprehensive and comlete, rather then piece mailed by several docs. She was sincerely sympathetic to our loss and my concern for the boys, possible future children, and the genetic implications that my children will have when they decide to have children some day. There are more details on the boys care page.

Hugh and I have been working hard on getting the garden complete. It is really starting to take shape and it is so exciting!!! Hopefully we can go and order the stones for the base of the plants. I did find a place that is going to donate the morning glories to us!!! I just about cried when the gentleman from CA emailed me telling me he was going to give them to us. He lost a child 15 years ago and knows the pain and what this meant to us. They will be shipped in the next few weeks and I can't wait. I also ordered a bench to put near his tree that says if love could save you, you would live forever. It is going to just be so beautiful when it is all done.

Yesterday I went to bible study at church, I really enjoy it. We are a very small group but it is more intimate and we get a lot accomplished on so many levels for all of us. I spoke alot about George yesterday. The topic was waiting for just the right moment and also how to deal with your enemys. Both subjects were very close to my heart. I have truly learned to listen to myself and God when I get those"gut feelings" They are not wrong because they are placed in our hearts.

We talked about dreams. It always amazes me when I got to bed at night after a rough day or after feeling overwhelmed about a decision I have to make and I wake up knowing exactly what to do. I also remembered the dream where I know George came to me to let me know that he was ok...I cannot ever explain the feeling in that dream but it just put a peace in my soul I cannot explain. So many times I have just had that guidance...although it took me a long time to figure out what that meant.

It was nice to have that time to talk and not feel funny about it because he died. Having people that listen rather then jump in the conversation with their own woes was also a much needed thing. There have been very few times where I have ever had that without someone else mentioning their sorrow or turning it into a this happened to so and so. Many times I just grit my teeth and bear these conversations while I am screaming inside saying "this is NOT the same!" This is my pain and it is very valid and having someone to share that with and not being interupted and just being allowed to not have to make it about someone else was just such a blessing for me.

I miss my little boy as much today as I did the day he left. The pain is the same and has not dulled any, I have just gotten better at keeping it together. Small things will forever remind me of him but they don't always make my eyes cry but make my heart cry. God is always with me and even if no one else understands, he does. He gives me the assurance that I am doing things the way they need to be done dispite outside criticism and lack of understanding of those who have never been through the loss of a child. Who else could understand that sort of thing better then God.

Below is a poem that my cousin Ashley sent to me and it really just says so much!

To My Dearest Family:

Some things I'd like to say
but first of all to let you know
that I arrived okay
I'm writing this from Heaven
where I dwell with God above
where there's no more tearsor sadness there
is just eternal love
Please do not be unhappy
just because I'm out of sight
remember that I'm with you
every morning, noon and night
That day I had to leave you
when my life on Earth was through
God picked me up and hugged me
and He said I welcome you
It's good to have you back again
you were missed while you were gone
as for your dearest family
they'll be here later on
I need you here so badly
as part of My big plan
there's so much that we have to do
to help our mortal man
Then God gave me a list of things
He wished for me to do
and foremost on that list of mine
is to watch and care for you
And I will be beside youe
very day and week and year
and when you're sad
I'm standing there
to wipe away the tear
And when you lie in bed at night
the days chores put to flight
God and I are closest to you
in the middle of the night
When you think of my life on Earth
and all those loving years
because you're only human
they are bound to bring you tears
But do not be afraid to cry
it does relieve the pain
remember there would be no flowers
unless there was some rain
I wish that I could tell you
of all that God has planned
but if I were to tell youyou wouldn't understand
But one thing is for certain
though my life on Earth is o're
I am closer to you now
than I ever was before
And to my very many friends
trust God knows what is best
I'm still not far away from you
I'm just beyond the crest
There are rocky roads ahead of you
and many hills to climb
but together we can do it
taking one day at a time
It was always my philosophy
and I'd like it for you too
that as you give unto the World
so the World will give to you
If you can help somebody
who is in sorrow or in pain
then you can say to God at night
my day was not in vain
And now I am contented
that my life it was worthwhile
knowing as I passed along the way
I made somebody smile
So if you meet somebody
who is down and feeling low
just lend a hand to pick him up
as on your way you go
When you are walking
down the street
and you've got me on your mind
I'm walking in your footsteps
only half a step behind
And when you feel the gentle breeze
or the wind upon your face
that's me giving you a great big hug
or just a soft embrace
And when it's time for you to go
from that body to be free
remember you're not going
you are coming here to me
And I will always love you
from that land way up above
Will be in touch again soon
P.S. God sends His Love

--Author Unknown

The Two Most Important Men in My Life

This is a poem that my dad forwarded to me. It meant the world to me and I wanted to share it. For those of you who don't know my dad personally, he is a quiet man with a wonderful soul that doesn't say very much. We don't have the "typical" father daughter relationship but what we have is so much more and is just special. Words don't have to be exchanged but we know that the other loves us just for who we are. The morning that George earned his wings, my dad came looking for me at my house. He hugged me in my room downstairs. It was just one of those moments and he hugged me as I cried in his arms like a little girl does. At that moment he was just my "daddy" and doing what he could to try and take my pain. It meant more then I can ever explain to anyone.

If I could catch a rainbow

I would do it just for you

And share with you its beauty

On the days you're feeling blue.

If I could build a mountain

You could call your very own;

A place to find serenity,

A place to be alone.

If I could take your troubles

I would toss them in the sea,

But all these things I'm finding

Are impossible for me.

I cannot build a mountain

Or catch a rainbow fair,

But let me be what I know best,

A friend who's always there..

This poem I found and thought of Hugh. It then later translated to my father also in so many ways. Men are always forgotten in situations like this and hurt in their own way. I found this poem today and thought of my husband who is also grieving the loss of our beautiful boy and holds it together all the time for the kids and I. Phone calls for him are slim to none. He is a great father and husband!

Untitled Poem

It must be very difficult

To be a man in grief,

Since "men don't cry" and "men are strong"

No tears can bring relief.

It must be very difficult

To stand up to the test

And field the calls and visitors

So she can get some rest.

They always ask if she's all right

And what she's going through.

But seldom take his hand and ask,

"My friend, but how are you?"

He hears her crying in the night

And thinks his heart will break.

He dries her tears and comforts her,

but "stays strong" for her sake.

It must be very difficult

To start each day anew

And try to be so very brave--

He lost his baby too.

Author Unknown

Unexpected Moments

The last two days have just been a whirlwind of events and emotions. All of the events were totally unplanned our our part but I know that God had his hand in it all along with my little monkey up there. There has been a lot of unexpected moments both emotionally and on working through our grief as individuals and a family. Some moments brought more closure and finality and others were for ways to help us live this new normal.

Yesterday Iwas on Facebook and came across a link that another bereaved mother posted about a retreat place in Minnesota for families who have chronically ill children or those who have lost a child. They have different programs for families and also for couples. You need to get a referral from a medical professional or clergyman or some other sort of organization. After much thought and contemplation, Hugh and I have decided we really want to go there and have asked our minister to refer us for this faith based program. We are still waiting on an answer but if they won't, I will talk to George's pediatrician and have him sing the paperwork. We will have to foot the cost for the flight and there is a donation request of $25 a night but it is so worth it for the two of us to get away and also to be with other parents going through the same thing.

That being said, it sent me on a quest to look for something similar just for Richard. I found a wonderful organization that has a camp for kids who have lost someone close to them. They have several around the US and one is here in NJ. I couldn't think of a better place for Richard to be and a way to help him work through his grief. We have been seeing a lot of emotional and behaviour outbursts with him and I want to help him when possible. But I also realize he is much like me and won't go to those he is closest with since you know they are hurting too. This is a way for him to find a third party place and be able to work through his grief.

It is a non profit organization and it doesn't cost anything for him to go. He will go for 3 days starting May 14-16th. I spoke with a woman from there today and I am so excited for him to go. Hugh and I are going to take him(it is about a 2 hour drive but I would go further then that if needed to get him what he needs) We get there around 4:30-5:30pm and the two of us will stay for dinner with them and meet the staff there. He will stay and we will come back to pick him up on Sunday. On Sunday we will bring the boys and they have a memorial service and a balloon release for everyone. I am so glad he will have a place to be comfortable and also for him ot know he is not alone and can go to others. Traditional conseling is not his thing nor is it anyone else in our families. That is ok and I am so greatful to have come across this place and i look so forward to him going!!!

Today Hugh and I were out and about doing some shopping. We have plans to get this house as free of toxins as possible for so many reasons. I'm not what people call a "tree hugger" but I am a "child hugger" and after losing one child I refuse to lose any due to toxin issues. It isn't harmful to do this but it surely is a huge risk to not do it. I wish I had known this before but I cna't change that I can only move forward and that we plan on doing.

While we were out and about, we got a call from the prosocutors office. I had totally forgotten that I had called them this past Friday. "Bob" told me he got the release form and that we could come up anytime to get George's things. He told us he would be there until 4 today and then there tomorrow. Knowing myself, there was no way I could wait a whole day. We cut our shopping short and dropped Michael at my mom's and made our way to their office. I dreaded the entire thing but am so glad to have his things back. They didn't belong in paper bags in boxes sitting in their closet.

Hugh and I came home and went through his things. They tookt hings he had never even used and other things that just made no sense to us. Some of the items we threw out, including his soiled diaper...still can't believe they kept that! My God it was so hard to go through those things. The blanket the hospital gave us in our "Angel kit" was there and that was what we held him in at the hospital. There was a pair of pajamas and I think they are the ones he was sent to the medical examiners place with...but still have figured out how they got on him or even where they came from. He was naked all but his diaper and the blanket when we held him in the hospital...none of his clothes were there that I can remember. I think my sister may have brought the outfit but I know none of us placed him in them. It just meant so much to know that someone else thought enough of my little boy to put him in his clothing. I know it sounds stupid but for whatever reason it just gives me peace knowing this because I had no say in his death and what happened to him after he died...only a bunch of strangers did.

Hugh and I both looked through his things and cried. What do we do with them? Why do these few things have so much meaning to us? We would give anything to have him back. Our hearts just hurt so much knowing that he will never be here again...he will always be the missing piece to our puzzle here on Earth. It still amazes me at times that he is really gone and then it feels like it was all a dream and he was never here. So many mixed emotions come and go in a matter of seconds.

The were really good to us at the prosecutors office. I was greatful for that. They truly didn't want to do this to us or our family but because there is evil in the world, this sort of stuff has to be done. It makes me so sad to think that athis is how it has to be especially during such a difficult time for people. Two of the guys even carried his things in their boxes to our van for us. "Bob" said..."I''m sorry, and held my hands" I just looked at him and said thank you. He could tell in my eyes how hard it was and how badly I hurt and yearn for my little boy who I loved with all my being. We did not have him go through the things with us there and he was greatful that we opted for that too, I am sure. He didn't want some mom and dad there crying over their dead son's things. The very few reminents to them that proved to them this little boy was in our lives.

I did go out to finish the rest of our shopping. Hugh stayed home with the boys and I was kind of greatful to just have that time to myself. So many things went through my head. I had gone to Target since they carry most of the non toxic cleaning supplies out there. We got quite a few to start with and I am curious to see how well they work. While I was there I had planned to look for a book "the Very Hungry Catipillar" for Josh and Michael since they are reading it in school and in love with it all. While I was there I came across this children's book called My Little Monkey. I just started crying in the isle and had to buy the book. It had a small little monkey with a blanket attached to it. I also purchased a plate for each of the boys to eat on that had a monkey printed on it since dinner time was always family time and that is just not ever going to be the same again. It ws a way to give the boys a symbolic way of having their brother there with them.

After Target I went to Joann Fabric to look for the small garden flag post I was looking for. I finally found one but no flag yet...I think I am going to have to start ordering a few online. They also had a lot of their garden stuff on sale. I got a bunch of cute little stakes for his garden... They are going to be beautiful and make it perfect. There were pinwheels in a heavy duty plastic and I figured a child's garden couldn't be without pinwheels blowing in the wind. The lady at the check out counter looked at me strangely but I didn't say much and got my things and took them home. There were some monkey ones I picked up that I am going to have to paint but I got 4, one for each of the boys. I am going to keep my eyes out for more of these sorts of things, they aren't expensive but just add a childlike feel to a garden and since that is hwo it is for, I just know I want them added. My sweet boy is missed so much and we just need that perfect place to go when we miss him the most. I love the fact that I can change things out for holidays and still celebrate with him.

WHenever I would come across things of his randomly, I would always hate it because it made my heart ache. Well,I began to relaize these moments come from him and God, letting me know he is ok. I came across his hospital bed card and just cried one day, then there were his hospital bracelets, and I cried, and then there was a binky wrapped in a blankie today that was not listed on the papers. It was his way of letting us know he is with us, because of my grief and aching heart, I was overlooking these things and thought of them as just pure torture when in fact they are small momentos meant to remind me of how much he meant to me and no time that he was with me was ever sad. All of the moments i had with him were joyous and that is what I have to remember and look for in our new normal, was to make those unexpected moments, moments of joy rather then sorrow. My heart will forever be sad but that doesn't mean there is not room for more joy then sadness.

Forever Sad

I think the sad reality of it all is that my heart is going to be forever sad. The past few days I have talked to several mom's who all recently lost their children to SIDS. Many of us have the same feelings and some people are a year of more out from the loss of their child and others are only a few weeks. For me the fog has lifted and I am left in the sad reality I now call my life.

My arms are empty, my heart is broken, and I now live with a heart that will forever be sad. I miss my sweet boy more then words can even express. So many times in the past few days I have just broken down in tears because the reality has just hit so hard. Never again will I see his smile or hold him the way I use to. I won't see him jumping up and down in his bouncer with a huge smile across his face the minute he met my gaze. God I miss those moments so much! My heart aches for those moments that I will never have again and is yet still pained at the thought of the joy that it once brought me, knowing I will never have that again.

I watch other parents with their kids and wonder why my little boy? There are so many people who don't love their children and throw them away like trash and yet mine was chosen. Why? No sort of fairness is there in this thing we call life and I don't think I will ever truly understand it all. Why is my faith tested over and over again...I have been through so much and could truly need a break from the insanity. Now I will never have that ever in my life.

I've contemplated returning to work but still cannot find it in myself to do such. Many people just think that it is easy since I work from home but that is why it is so difficult. It wouldn't be like going back to a job where you don't see your child. I saw my sweet monkey every single day of his life all day long. Every time I would take a break I would come up and there he would be in his jumper and as soon as he saw me he lit up. My God I miss those moments. Thinking of not doing that again is so hard. Working is what I was doing when I heard Hugh's panicked voice when he found him. I still wish I had gone in their rather then trying to finish my hours that day so I could spend time with him that night because maybe I would have been able to do that but rather I was planning his funeral and never did complete those hours. The very thought of work right now is just overwhelming.

Losing a child in this manner has got to be one of the worst ever. You don't get to say good bye. You feel as if you should have saved them or done something different. The tramatic immages never leave your mind. There is just so much left undone and with no answers. I think it just makes you feel so helpless and lost. Realistically you know you can't change anything and somehow you have to move forward but in your heart and every fiber of your being, you can just barely find the strength to breath. You watch others going about their lives and yearn for that innocence that they all have and that you have been robbed of.

I have decided that I hate the phrase "I'm sorry" It has got to be the worst saying that people can say when someone dies. Prior to our angel earning his wings, I myself used that way to cavalier without truly thinking about how it sounds or what to say in place. I know I will never say that again to someone. Saying "My heart goes out to you" or "I'm here for you" is a million times better. I'm sorry is just such a rediculous saying because the individual did not do anything to caue the person pain. It is kind of if you appologize for everything, then the meaning kind of loses something. You know that when people say it, it is mainly because they don't know what else to say and that is what society teaches us to say.

As a society we are so unequipt to handle death, especially that of a child. When it does happen, everyone is so lost because the reality of it all is just so overwhelming. I'm greatful that I can help my chidren to handle death in a much different manner. No matter how good or bad you are at handling death, nothing can preare you for the loss of your own child. The pain is so great and unexplainable...it goes against the very nature of life. Here are two sayings I have come across the past few days that have such meaning to me.

When a parent dies, you lose your past; when a child dies, you lose your future Anonymous

A wife who loses a husband is called a widow. A husband who loses a wife is called a widower. A child who loses his parents is called an orphan. But...there is no word for a parent who loses a child, that's how awful the loss is! Neugeboren 1976

We have gotten most of the flowers we are looking for to create his memorial garden. It is our way of finding a place to find peace when we need it and miss him where there are signs of life. I've been looking online for those little garden flags so that I can change them out with holidays and seasons. Since we did not have a headstone or anything and still have majority of his ashes here, it is kind of like having a cemetery in our own back yard. There are only a few more flowers I am hunting for...blue forget me nots...white calla lilies...and blue morning glories. Forget me nots are just very symbolic my name and nature. I love calla lilies(really hate the traditional ones) they just remind me of a uniqueness unlike any other flower. Morning glories are for our trellis to the entrance to his garden because he was born and also died in the morning so they open and close with the morning sun and I can't think of anything more fitting. The stores have not had these three particular ones so I am gonna have to do some hunting and maybe even order online if I can find them. It is coming along but on hold right now because of the rain. It is going to be beautiful and I cannot wait to have it done.

Please keep us in your prayers. We still have a lot of grief work to do but we will make it through even if our hearts are forever sad. We know that one day we will be with our little monkey again when our souls are eternally happy and look forward to that day although we hope it is a long time away. Kind of one of those bitter sweet kind of things.

Seems Like Yesterday

Our sweet baby left us 12 weeks ago. It seems just like yesterday that I was holding him in my arms and yet it seems like an eternity has gone by if you actually think about that very moment it all happened. It seems as if each week marker holds an obstacle for us on an emotional level and yesterday was no exception. Both Hugh and I had rough moments yesterday.

The two of us went out with Michael. He had a dental appointmnet to check his teeth out. We finally found an awsome dentist for the kids. He will be going into the hospital to have his work done but he was such a good boy. We had told him if he was good he could have McDonalds. He of course didn't forget that and held us to our word so Hugh drove to the closest one. We pulled up to get our order and Hugh pulled forward to be able to get Michael settled. Suddenly he realized the last time he was there and emotion just flooded him. The last time he had been at that particular one was on his way up to the hospital to see me when I had given birth to our little monkey. With that we both just sat there crying. Something so small can evoke such a huge emotional impact.

We went back home since my mom called and told us that George's life insurance policy information had come in. Hugh and I had litterally just added him only a short few days before he earned his wings never expecting to ever collect anything on it. I cant tell you how hard it was to go into my mailbox and pick it up. I didn't even want to open it. Hugh was waiting in the car since we had needed to go buy some basics from the store. I walked over and just stood there crying. It was so bad that the neighbor had asked Hugh if I was alright when I ran inside quickly to get some tissues. The drive to the bank was one of the longest drives ever. It was such a bitter sweet moment. Usually you are happy to get money but we didn't really want this money, we would have rather had our little boy back. We would have given anything to just have him back and not a piece of paper on an envelope.

Hugh went in with me while I deposited it. My hands were shaking as I signed the check and handed it to the girl. I told her that it was a life insurance check for my son who had passed and I needed to know when it would be available because we are very behind on our mortgage. She just looked at me saddly and handed me their breakdown sheet. It will still take almost two weeks to be available but at least we can finally call the mortgage company and tell them we can pay them. They have been udnerstanding(even though it will still show on our credit, but after your child dies you could care less about a stupid number that everyone judges you by) and I wanted to be able to give them a timeframe.

One of the tellers happened to know me because I was her son's cub scout leader. The last time I had seen her, it was at the drive thru and I had passed her pictures of the baby. She turned to Hugh and asked him how the baby was and Josh was. He said Josh was doing well but the baby had died. She just didn't know what to say and felt so bad for asking. I told her to not feel bad, that it is tough but she did nothing wrong in asking. I proceeded to tell her that I want good to come of his life not bad and what our plans are We told her what had happened that day and by the end almost all the indoor tellers were over there listening with tears in their eyes in utter disbelief. None of them knew it was 12 weeks to the day we had said goodbye to our little monkey.

We made our way back to the car to continue with our day still very emtional but with a feeling of finality and helplessness all rolled into one. The money will be enough maybe to just about catch our bills up that have not been paid since almost the time he died, put together his memorial garden, with maybe enough to buy his brothers beds and that is about it. It was odd to look at that check and think, this is what my sons life was worth to this company but to us we would gladly take him back and give that back to them. Hugh and I sat there talking about the irony in it all. The very reality of it all has sunken in harder and harder as each day passes and we have more of these moments.

We still had to do what we were set out to do, go buy some things for the house. It has been extrmely tight for us here with me not working. Then this week I double paid a bill which put us in the negative and whe had to wait 3 days to have any money. It was terrible because we had to pay 3 overdraft fees and I was so mad at myself for making such a stupid mistake!!! It was the second time since George did that I did this.

Lately, it has been getting worse in terms of remembering things. I was actually more together in the immediate weeks following his death then I am now. Our credit cards were maxed between the boys medical bills and the cost of his funeral so we didn't even have that to fall back on. Ironically, I didn't care. I never thought I would ever say that. We had enough to get enough gas in the car and milk for the boys so that was all that mattered for those 3 days. Hugh's unemployment check came in for the week and we used some of that to go get some basics yesterday.

The one card we had a reasonable amount of money on was the Lowes card we have. We don't use it for a lot of stuff. Hugh and I decided that we were going to go there yesterday and use it to begin getting plants for George's garden. By the time the check clears, we can just pay off whatever we spend. I think we both needed somthing happy to do and the availabitiy was there so we just went with it. It had pressed so much on my heart that I didn't care we needed to do, I knew we needed to do this.

Richard had a hard day yesterday and went with us to pick out flowers. I huged him in the store and he just started crying and I told him I was sorry I couldn't take his pain away and that I couldn't fix it. We sat there crying and holding each other in the middle of the isle. Our little truck had a bunch of flowers but we still need quite a few more. We are going with a white, yellow/orange, and blue color scheme. They did not have the blue forget me nots we want to get or the white calla lillies that I want to get so I will have to email the guy from the nursery. Richard and I picked out some beautiful plants and can't wait to see them all in place.

We made our way to check out when an employee asked us if we found everything ok, I said yes and she made a remark about the flowers. I told her they were for our son's memorial garden and he had passed away in Jan. Several of the other shoppers had overheard it and the sympathetic but approving faces surounded us as we walked to the line. People don't really know how to handle it when you say your child died and sometimes you handle it better then they do. I'm not afraid to say that my son died and I am going to talk about it. I've decided that I want to make it part of my mission to make this not such a taboo to talk about. We even bought one of those vinyl stickers for our car that has his name and dates on it.

We are going to have to go back today and get some more plants. I want to get them all now since it is harder to find quality and what you are looking for later on in the season. Hugh began planting some of the flowers/bushes yesterday. It is starting to look good! I had purchased a few angel garden statues and precous moment ones. They are so adorable and are going to really make the whole thing look beautiful. I bought ones that were little boys or boy angels and they are just perfect. It is going to be a huge task but it is going to be well worth it. We may have a dedication once we are done and maybe see if the deacon who was with us at the hospital when he died would help us maybe bless the garden. We have our work cut out for us today as we continue with our work out there.

I woke up this morning when Hugh's alarm went off. For a brief moment I forgot that he was gone. My first instinct was to go check on him. I hate those moments because they are immediately followed by...he is gone. It was one of those mornings that I would have brought him downstairs with me and played with him in my bed. He would have snuggled under my chin and just lay there on my chest content and calm sucking his thumb. God I miss those moments more then anything else. Those moments of quiet where we are just there enjoying one another's presence. It seems like only yesterday we were doing that.

Amazed

The past two days have been a whirlwind of emotions and events. Tuesday has been one of the worst days we have had and yesterday was one of the best. So many things have been going on good and bad. Tuesday Michael broke his tooth, the neighbor called the cops on our dog for barking, and it was generally a very emotional day. I joined a couple of online support groups and am still feeling my way around to see where I fit in. The local Compassionate Friends organization called me back so Hugh and I can look into attending one of their mettings in May.



I was so furious after the cop knocked on my door. It was not during hours that are quiet hours when the dog was out. She is a rescue dog so she is very skittish and barks a lot when outside. A leaf falling from a tree will start her off but she does stop. We are also trying to get her use to staying on the line for a period of time so that she doesn't always have to be stuck inside on nice days. Of course whoever it was(and I have my susp who it was since we have had problems with this neighbor right after our son died and for whatever reason she always starts with Hugh and I. We want to just be left alone to live our lives without her interfearing because she doesn't like us and we just choose not to associate with her.) didn't leave their name. I just don't understand why they just couldn't knock on the door and say the dog is annoying us, can you bring her in. I appologized to the officer for someone wasting his time, There were tons of dogs outside barking all day long and especially during that time period. He even admitted that he hadn't even heard the dog the whole time he was there because all he heard was the dog two doors down!



The people across the street have had numerous issues with us for whatever reason. I have never understood why or what the deal is but if you don't like us that is fine just don't bother us. They have no idea the life that we have to lead and only see and judge us by the very little they know about our lives. I pray for them because we are not the only people that have had issues with them but they put on a good front for everyone who has never had issues with them. It is sad but I also refuse to give into a bully, because that is what they have become to our family. I really feel sorry for them and the people they are, that they have to do this to a family who has had such a hard time in life and just lost their son.


After the cop left, who was none to happy that someone called about something like this, we moved the rest of George's things to my mom's house. It was so hard to do. I stood there in my front yard crying as my brother put his bouncer, swing, and jumper into my dad's truck. The finality of the things that he used every day going away was just so hard to see. It just sunk in even more that my sweet boy is forever gone. It is so terrible to know this is how my life will forever be...without my little boy. I miss him so much every single day and it is not getting any better and I have just come to the conclusion, it isn't.



God has a plan for us all and I keep telling myself that. I don't like what he chose to do with my baby but I have to trust his greater plan. There is this awsome picture I took of George right before he died where he is pointing his finger. I sat there looking at it after another mom who lost her daugter to SIDS made a comment on it on facebook. She said that it looked like he was saying "Can you believe these guys?" Well, I sat there thinking it has got to be the same exact expression he is using when he looks down from heaven. Just sitting there expressing to everyone up there...do you believe them all and what they are doing? I am here and in such a great place. At least that is what I try to tell myself when I question why he took my son. I sat there that night asking God why yet again.


In the morning I had gotten a call from a Dr. at the SIDS foundation. I told him about the questions I had with his autopsy. After much discussion, he told me that he felt we needed to look further into his death since we knew we had a family history of metabolic stuff. He was concerned on many levels and thought that my questions were very valid and needed to be looked into more. He suggested I contact a genetics doc and also the medical examiner's office to see if they still had things from his autopsy. I got a hold of them immediately to make sure they did not destroy anything and they have what is left of my son in a jar and in their freezer( I hate the very thought of what they do to remains after an autopys...it makes me so mad and why I didn't wan't one to begin with, but I had no say. I cry every single time I think about what they did to my baby and his body).

I called the genetics department at Cooper since I knew they took our insurance. The boys old ped had worked there during his internship and that was the first hospital Josh was at when he had his seizures. I was not thrilled with them but have not been with St. Chris and figure that I will just have to teach these docs, The United Mitochondrial Disease Foundation has a program where they will send one of the specialists to a hospital and I know they are trying to make their hospital a pediatric specialty hospital so it is worth a shot. If I don't like the first appt or the outcome I can reevaluate what we are gonna do.


I called the genetics department and got a call back right away. Ironically(or just part of God's plan) they happened to have a cancellation for next Thursday. I told them I would be there no matter what since if it wasn't for that slot opening we would have been waiting until Sept. This doc had come highly recomended by a pulmonologist that we had followed with at their hospital prior to our switch to St. Chris.

She said this doc has no problems saying she doesn't know an answer but will find out and hunt down any docs that she needs to in order to get answers. I appreciate that more then anyone could immagine and hope it works in our favor. I went today to drop off their records so they could sift through them prior to the appointment and make copies of the things they need and let me know if there is anything else we have to get.


My day did not end there either. I've been doing a lot of research on a corrolation between SIDS and metabolic stuff, especially after the conversation with the doc from the SIDS foundation. I have a friend who is a microbiologist in German who had also told me about chemical issues. I know that metabolic stuff can also be related to enviromental factors and could actually be a combination of heredity and environment. I've been trying to switch a lot of the kids things over to products that don't have toxic cemicals involved in their make up. I happened to look at some information on a company that we have recently noticed comercials for and I happened to see in the local store. On their page I found a page to a company that specializes in chemical free mattresses.


That is unheard of here in the US apparently. My recent research has lead me to find the US is the only country worldwide that allows chemicals on our mattresses. Our mattresses cannot be sold in other countries due to toxicity levels!!! The chemical has been linked to SIDS and metabolic issues. I just about had the wind knocked out of me when I found all of this information. There have been numerous studies that we here in the US don't acknowledge but after speaking to others that live outside of our country and my research, I have to agree with them and even if I am wrong, I am not willing to take the risk. I emailed this company http://www.hastens.com/en-us/ about their mattresses to see if they had any East Coast facilities since they are a specialty store in Hollywood, CA with extremely high prices. I just gave them a brief reason taht I was looking into this and asked if they could give me some guidance and help I would be greatly appreciative of their help. I never expected to really hear from them other then the standard message.


Just about a half hour later, I got a phone call from CA. I really thought it was a bill collector to be honest. When I answered the phone there was a mans voice on the other end who just did not know how to say what he was feeling. He fumbled for the words to tell me who he was and how sorry he was that I had to contact him under the circumstances. Our story had touched his heart and he happened to be the vice president of this company!!! My jaw just about hit the floor, here is a vice president of this company calling me, a bereaved NJ mom. He was such a wonderful person and he tried to tell me how to go about making our house a "green" house. He told me what was importnat to switch out first since the entire process is expensive.


I cried several times as he told me his experience with SIDS in other countries(He was not trying to sell me his product because he gave me other alternatives if we can't make this happen but rather, he cared for us...complete strangers). His company is the only one here in the US that has 100% chemical free mattresses. He also confirmed much of my research on SIDS and cell dysfunction and all the chemicals we use in our homes. He explained why we now have a new sleep position for children here in the US and all of the things that go hand in hand with the chemicals on our childrne's mattresses. The one thing I don't get is why a child's bed has to have this stuff on them because it isn't like they are gonna fall asleep with a cigarette in thier hands and set the bed on fire! Side effects of chemicals is nothing new to most of us since there are many people now realizing the damage these things have done to many people's health. He told me that they are willing to work with us to get our boys healthy mattresses. I just sat there sobbing and thanking him. He didn't have to do that and told me that he thought that we all have a purpose here and if I find any organization to work with him on spreading the word about all of this then I am to call him and he gave me his personal cell phone number. I am still in shock now!!!


My theory on it is definately that those with metabolic issues on a hereditary level are more likely to have issues with these sorts of chemicals and that is why not every baby dies. No matter if I am wright or wrong, I am not willing to chance my childrens lives, I have already lost one. I don't know if George was here to save his brothers but I know he has touched so many people in so many different ways. Hugh has such a huge family history of loss of infants to SIDS and lots of other serious medical conditions to those who are close to him. The genetics office said that there has got to be more to this all and I have to agree. No matter the case, he is changing lives even in his death and I guess if you have your child go before you, you want at least something good to come from your pain. I am just still so AMAZED how a 4 month old little boy who could not talk or walk can change the world in such an amazing way.

Trouble Keeping it Together

I just feel so very out of sorts. The past few days have been very hard on so many levels. I think that the "shock" of it all has worn off and we are just left with raw emotion. It is difficult to get up in the morning and I keep finding I forget things compeletely! Anyone who knows me, knows this is not typical for me. I am the mom who juggles a million things. Remembering where everyone needs to be at what time was always so easy. Now I can't even remember it the kids ate or brushed their teeth.

I've done a lot of thinking and also talking to Hugh. After much thought, I realized why I now hate to cook. The kitchen is the place where Hugh had handed George to me and my nightmare began. I did CPR on him laying on my counter and those immages are so very vivid to me and I cannot get them out of my head. Cooking and using that counter is just torturous for me. I could not pinpoint why I didn't feel like eating or cooking and then it all came to me and washed over me and I just sat there crying. Of course not doing it isn't an option but every single time I do, those horrible immages take over my thoughts and I barely get through making something as simple as toast.

These immages keep coming back over and over again. I cannot get rid of them dispite much trying. Yesterday I came up the stairs in a panic because Hugh was yelling and I heard his feet pounding hard across the floor. My heart dropped into my stomach because that is the same way it was the day he died and the moement he found him. Anytime I hear him get upset or walk hard on the floor panic washes over me and I am thrown into an all out panic attack. Yesterday I just had enough and looked at him and yelled at him to stop freaking out because he is making me go crazy and then just broke down in tears. Medication and talking to people has not helped, time is going to just have to help with this but it is such a nightmare to have to live like this.

So many "what if's" keep flooding my mind. What if I had gone into his room earlier when I went to get Richard ready for school? Would he still be here? What if I had changed his pajamas the night before like I had wanted to? What if I had remembered to do infant CPR rather then adult? Would my angel still be alive and not an angel? Had we called 911 right away would he still be here? If only I had prayed harder or had more faith or done something different would he be here? I know all of this is normal but when you are living it, it is just torture and makes it difficult to just breath. Most of today I walked around crying or with tears in my eyes.

If it was someone else I know I would tell them that there was nothing else they could do but as their parent you just feel so responsible for them. I feel like I failed him and in the biggest way possible. I should have saved him, that was my job as his mom! Being a mom is what I was always good at. I failed in many other aspects of my life but I was good at this. Yet I feel like I have failed at it all now.

I have joined an online support group and looked into several other local groups dispite the fact I am not really a group kind of person. It was nice to talk to other parents who have lost children who really understand where I am with all of this. They assured me that all that I am doing is totally normal and that it doesn't get easier but you cope better. So many things that others just don't "get" are things that only someone who has lost a child can understand. It made me know I was not crazy and that it is ok to feel this way.

I did contact the SIDS foundation that had initially gotten a hold of us. They have not contatcted us since 2 weeks before his autopsy report was finished and I just don't get that. Initially I was so upset that they had our information. It was as if they got more information on my son then I did and I was his mother. In a way I think I was angry becuase I felt that they had more say and I lost all my say the moment he stopped breathing. All of these strangers who did not even know my son had more pull and say in his death then I did. That is really what was very upsetting to me. I know it had to be that way but it was hard to have to feel like we were under a microscope and that everyone else had say and we didn't. I carried him and I knew him, not them.

All of a sudden the calls just stopped with no warning. Yes we can call there but it is very difficult to get up the composure to just make a phone call about something simple, this is so hard. They have a thing where someone comes to read through the autopsy and I want to do that since I do have some questions about it all. I emailed them but have not yet had corospondence back. I did add him to their memorial page today.

Part of me hates to read their page though. It tells you all the things to avoid doing to try and prevent SIDS. Somehow you sit there and question everything you did dispite the fact you knew there was nothing more you could do. Was he too hot in his pajamas and with his blanket...they say that overheating is one of the leading causes. Then I tell myself he had worn those and had that same blanket before. If he did have a metabolic issue then yes his autonomic nervous system could have malfunctioned and then he would overheat but I will never know that. Then I say, we put him to bed on his tummy because he asperated and had horrible reflux that we could not get under control. If we didn't we would never get him to sleep and played huge issues with aspiration...it was a damned if you do and damned if you don't thing. They are suppose to sleep on their backs but that was just not possible for him. So many times I changed his positions trying to make it more of a back sleep but it just never worked. Reading their page makes you feel as if you should have known better even though they don't say that, it is definately self inflicted guilt coming from so many what if's.

He had breathing issues since he was born. Because he didn't do it in front of docs, he was not on any monitoring or any of that. I know that he always had breathing issues but didn't know what it was from, I told the docs a million times I was concerned about it. I would always tell them it was not "normal" and 4 kids in I knew what normal was but it was never long enough to video it or during the times he was in their offices. I regret not pushing with this further but I also know there was nothing much more that anyone could do. He had trouble eating and just had lots of little things but no one could have predicted this.

That entire day seemed as if it was the longest day in our lives. The moments that went by between when we found him and when he was prounounced seemed as if it was an eternity. I still play those moments vividly in my mind and know it was only a few minutes but my got it seems like forever. Someday I hope that these horrible memories are taken over by only good ones. Good ones and bad ones are all painful right now and have been since he left us. Having lost him makes us feel like we are on a different planet. A friend of ours who also lost her child explained it as if you were droped off in some forgein country with nothing but the shirt on your back. You don't speek the language and can't leave and have to learn to find a way to survive.

I would give everything to have him back, yet know that it will never happen until I meet my maker. I've found myself listening to a lot fo Christian music and trying to find comfort that way. Being around others is just hard and I can't do that right now. It is odd because you feel as if you are there they are all sad when they look at you and they have to be careful what they say. This is what makes you feel like an outcast and yet if they make small talk you find you ahve no patience for that either. In many reguards I just keep telling myself it is part of the road in front of us. Today after talking to several people I know this is normal but this normal sucks. Everything is hard to do and you just feel like it is so hard to keep it together and sometimes are just overwhelmed by that very fact. There is a great Christian song called "Everything Falls" by the group Fee and that is where I feel I am right now.

It is then that I carried you...