Normal?

Ok, I just don't know how to do normal yet. Most of the day was a pretty good day but it was just as if something was missing. The weather was beautiful so I decided to clean our van out. It needed to be cleaned for sometime now but the weather has just not made that possible.

I started to throw things out and get the junk out. Then I came across some of the babies things and just cried. They were from our trip to Florida. THe crazy little blue hat I have lots of picturs of him in was what I found. I remember holding him all day when we wehre there. He was in my Moby wrap and all tucked in close to me where he was safe and warm. My god I miss that more then words can say. Never did I think my heart could ever hurt like this just from a simple baby hat. I miss him so much!

I finished vaccuming and doing all the stuff dispite the fact I just felt terrible. Hugh took the boys to the car wash and got the outside of it done. It looks brand new inside, I hope it stays that way for a while. I am glad I did finally get all the stuff out of there. I think I am going to add the hat to the bag of clothes I am putting asside to be used in a memorial blanket for us that a woman is making for our family. How do you go through your childs things and fingure out what to keep and what to give away. No one wants clothes from a dead baby and the thought of just being given away without any meaning is hard too. This is litterally the worst thing to ever have to go through.

We did have a lot of fun with the boys since the weather broke. They were outside most of the day with Hugh and I. We started some of the prep work for the memorial garden. Hugh and I are still trying to figure out the logistics of it all. It was so odd for me to be playing with the kids because in the back of my mind I kept thinking of how George would have loved it. He didn't get to ever spend much time ouside since he was born in September and it was always so cold. I was looking forward to taking him for walks. Hugh and I had purchased a brand new stroller and car seat combo for him and we never got to really use it. God I had so many plans for him and thinking about how I will never get to do any of it just hurts so bad.

Josh was playing in the sand today. He looked at me and told me to come see what he was making. I got over there and looked at his creation. He told me it was a birthday cake for Geroge. He was going to have to sing it to him and leave it outside since he was no longer in our house and was in heaven. Josh is such a thoughtful little boy. That kid always takes me by surprise.

All of the boys had a blast running around. It was nice for them to be kids and have no cares in the world. The played on the swingset, kicked balls, and all sorts of fun kid games. Michael had a blast trying to get me to chase after him and catch him. It was nice to feel for a little while that we were normal but think this is how our new normal is going to feel. It feels as if something is missing, dispite the fact we are having fun. The ups and downs just kill you when they come like this in huge tidal waves full of emotions.

Hugh and I were suppose to meet with our Trustee to fix Josh's trust fund but that got postponed. My brother and his girlfriend asked us to go to dinner so we went with them. It was nice to go out with them although I still ahve a hard time going out.I think of how hard it was for us to go out before becuase it was hard to find a sitter because of George.

Now we can get one but it just is so strange not having to worry about him and yet still have him on my mind constantly. It is in some weird way as if we are betraying him and his memory by doing these things. It sounds odd but I just feel like he should be doing these things with us and just isn't. I don't know how to get past these feelings of knowing he is missing and everything just feeling so incomplete. It is going to be terrible if this is how the rest of my life is going to feel.

Maybe it is a normal that just always feels incomplete. I miss my baby and all the simplet hings and long nights. I want to just hold him and play with him. Watch as he plays with is brothers and daddy who love him. We will never have that again. We will never see him toddle around our yard or enjoy being pushed on a swing. There are jus so many things he never got to do that we all take for granite.

My aunt Joan stopped by today briefly to pick up a tupperware container and dropped me off a ring of her's that I admired. She gave it to me but had to leave since her daughter was in a terrible car accident. We had planned to get together this week so I could talk to her. For whatever reason, I have always been able to talk to her when I just can't talk to anyone else. She never judges me and just listens. She dropped everything the day George died to come be with me and that meant the world to me. She is going to try and come over this week so I can just sit with her and talk and go through some of George's things to decide what I want to send to have put in the memorial blanket. I want to do it, I just have a hard time picking and choosing because it is so emotional for me.

I am hoping that we will be able to get to church tomorrow...but I will see how I feel in the morning. Right now I am just having a tough time because I miss my sweet angel terribly. My heart just hurts so bad right now. On a good note, I did find a local jewler willing to help us with the pendants we ordered. They should be here in a week or so. He will solder them closed once some of the baby's ashes are placed in them. He is also going to take the wedding band and engagement rings from my first marriage and buy them and put the money towards a chain for the pendants. He was very helpful and I look forward to working with him. I cannot wait to get the pendants and to always feel like I am carrying him around with me just as I did when he was alive. It isn't in the same capacity but I just find some solice in that and I really need that right now. Please pray for me tonight because I miss my sweet boy so much, I know I will get through it but the pain is just very overwhelming right now.

Another Friday, Another Week

Here it is again the day of the week that I just dread, Friday. It is amazing how even subconsioucly know this day is coming. Days are just flying by and I have lost recolection of what day it us but dispite that my body and mind know it is Friday. I could not figure out why I was having trouble sleeping again. Last night was a horrible night of sleep and I got up this morning confused as to why when I reailzed it was Friday again. 5 weeks since George left us. That realization every week is just like someone knocked you on the ground and knocked the breath from you.

I went upstairs to be with the boys and Hugh. The inflatable bed was up and there was George's monkey blanket I made for him when I was pregnant laying on the bed. I curled up on the bed under that blanket that use to keep my angel warm. Suddenly, I could feel him and it was as if he was there in my arms laying on the bed. It was a very odd feeling and I began to smell him. It was is if I could close my eyes and he would be there laying in my arms that now held a pillow. I realized it was the draft from his room that brought the sweet smell of my little boy to me from under his door. Part of me wanted to get up becuase it hurt so bad to be there but the other part of me could not leave for that moment was just like he was there and I just couldn't bring myself to leave that moment.

It is odd how remembering him makes your heart hurt but you soul smile. The memories of the moments he shared with us were so great that you find it hard to be sad about them but rather the fact you will have no more. What we had planned for our family was all crushed in a few moments but will last a lifetime. I've been doing a lot of reading about having more children after something like this. We both wanted more kids before loosing George and now I think it is even more prominent but it is also coupled with terrible fear. As much as we have given our lives to God, nothing can take away that sort of fear.

Hugh and I decided that if God gives us another child, then great and if not, that is ok too. We have decided that we are not going to worry about what everyone else things for once. No child would ever be able to replace George in our hearts. There will be no good time to have another baby because it will never be easy and it will be filled with so many mixed emotions. We were reading a lot that other people went through after the sudden loss of a child, and the general consensus was that you will know when it is the right time and that it could be right away or it could be never and to not let anyone infulence you either way.

I've come to realize as time goes on, the pain will never be gone. We have talked to so many people who have lost their children. When George had passed a woman from our old church had given a letter with a prayer on it to my mother in law for us. It had a poem on it that she used when she lost her daughter. She lost her daughter over 20 years ago and still misses her and hurts. The thought of that is so powerful and overwhelming at the same time. The prayer goes like this:

I take my loved on by the hand and lead him to you. God of love, Here is George. Accept my love and thanksgiving as I entrust him into your loving care. I want George to be free to be at home with you. I ask that you save a place for me there beside him and that you be my loving presence in all the lonely moments that await me. I ask that you fill me with motivations and energy in the days ahead when I feel like giving up. Remind me often of my true homeland when I am caught up in the desolation of the journey. Help me to find joy in the people, events, and the beauty of nature which surronds me. I want to believe that George and I will celebrater our love when we are in your presence forever. May this truth sustain me in the days to come. Take my sand and aching heart and comfort me. Comfort me for I can only feel hollowness and emptiness. God of the sorrowing, draw near.

Amen

Initally it did not mean that much to me but the past few days I have read it over and over again. This week would have marked my little boy being 6 months old. I could not wait for that day and I can't tell you exactly why. It was just some sort of milestone that I was looking forward to but one I never bothered thinking about with the other kids. How ironic it is that George never made it to that day and I know that it will be a pretty bad day but I know we will make it through.

Yesterday when I was at the church, I stopped by the memorial garden to talk to my man and let him know how much I missed him. Last week I had put a rose on his grave. It just baffled me when I went back that it was not withered or dead looking. The rose was just as it was the day I put it there. That has never happened before. The weather has been so crazy that I expected it to be withered and dead but found that it wasn't. I went home and hadn't thought much about it until today.

I thought about the awe that I felt the moment I saw it still there perfect just as I left it. Then today, I realized that it was the same way I had given my little boy back to God and that is how he is now in heaven. The very thought of my boy in heaven is so emotional. He is as perfect as that yellow rose that I placed at his grave. When I join him someday, it will be just like the flower I left for him, perfect and just as he was the day he left us.

It was also a sign that dispite what I feel now, I too can perservere even in the tough circumstances. A week later with no water that flower should have been dead and it was still thriving and as strong as the day I placed it there. The rose had been stripped of everything...thorns and leaves along with the majority of the stem. God has placed us in this unknown wilderness of parental grief but in the end we too can still be as strong, if not stronger then before. That doesn't mean that getting to that point will not be hard, it only means that it is possible dispite what we are feeling and going through right now. We are that rose, stripped down to our souls but strong and still thriving dispite the changing climate of grief that changes just as the weather does.

Faith

Tonight I went to a bible study program at our church that was based on the story of Ester. I had read the passage before I went but once we started to discuss it my perception on the way I look at some of the things and life once again began to change. It is amazing how God works on your heart in times like these and how once you feel you have already gone as far in your relationship with him that you find you were yet again wrong. We were only a small group of women that were there but you could feel such a presence there with us.

We talked about Esters uncle and his dream before she was taken to be the queen. His dream was about two dragons and a fight between them with lots of discription of the earth breaking and water flowing through. In the middle of it all was the rightous people who rose above it all. I related it to my own life and how bad things have always happened to me and yet even in the worst of it all I have the ability to get through it. It is my faith that always pulls me through.

We then proceeded to talk about how we each remembered our first experience of knowing what the meaning of the word God took on more then just a knowledge of the word. I knew exactly when that moment was for me. Many of the people had grown up with faith from a young age. I had gone to church and done all the expected things of any catholic child and young adult. I had made confirmation and all of my sacraments yet I did not know the Lord the way that I do now. It was still just a name on paper until I was well into my twenties.

I think a lot of it came with the misconception of how if I was a good person and did good deeds I would go to heaven. That belief just set me up to feel like a failure and inadequate to recieve God's love for me. No one ever told me that I just had to truly believe that Christ died no the cross for my sins. Good deeds didn't mean I was going to be in heaven and making poor choices didn't mean I was going to hell either. That was such a foreign concept to me at that point in my life.

I happened to be working a second job at the time at an optomotrist office in Walmart. My exhusband had been in prison and the thought of a fairytale life had been long gone to me at that point in time. My heart was broken and I didn't knwo where to go or what to do but I felt a need to seek my faith. I began by reading this book series called "Left Behind" It is an amazing fictional series based on Revelations and the end of time as we know it. The part that hit me the most was the point when the mistres of the Antichrist said she did not "deserve" God's love and at that moment I remember feeling that same way. As you read on, her friends explain to her that no one deserves it but God gives it and that you don't have to be perfect to recieve it. It was such a powerful thing for me and changed my life and sense of faith forever from that moment on.

By no means am I perfect and nor do I profess to be but I will tell you that I believe in God and Jesus. I have learned that there really are no bad choices in life because if you learn from bad situations then they have meant just as much if not more then any lesson you could learn from doing it right or making good choices. We all have to walk through tough moments in life and we are all going to falter and fumble along the way. We cannot change or control the things that happen to us but we can change and control the way we look at them and respond to them.

I have also learned that it is not my place to judge others. There have been many tiems I don't understand people or their choices but it is not my place to judge them. I don't know why they do what they do and I don't walk their shoes. I am sure there have been many people who have wondered why I have made some of the choices I have made in my life. At the moment that things happen it is the right decision even if it is a bad one. Just because people make poor choices, it doesn't make them a bad person. All that matters is that when I have to stand before my maker for my judgement that I can stand there and be be proud of who I am and the life I have lead.

The hard part of all of this is that I know I cannot make that choice for anyone else. I may want the sort of faith I have for my parents, children, husband, sibblings, and other loved ones and friends but I cannot make that choice for them. Free will is one of the hardest things to accept. The awe that the knowledge of that brings is just so awasome and overwhelming at the same time.

I am so greatful for my faith. It has gotten me through all the tough times in my life, especially the one I struggle with and will struggle with for the rest of my life, the loss of my baby. Today I sat here looking at his pictures, which I haven't been able to do in a while, and cried thinking of the moments I had with him. It wasn't really sad but rather a greatful cry for the joy that he gave me and I understood why I hurt as much as I did, because I loved him so much and he just brought something special to our lives. We had to each bring something that showed our spirituality. I put my cross that I wear on my neck on the altar. We had to explain why it symbolized our spirituality.

Of course the cross is a strong symbol itself but mine that I now wear was the one my husband bought for me as a Christmas gift from George(my first and only gift from my little boy) It is made with saphires(his birthstone and my favorite gem) and is simple. The meaning of it has taken on so much more since he has left us here on Earth. It sybolized to me not only the gift of my son but also my faith because as each day goes on, I find my faith stronger then ever before and the purity of his very soul shows me what God wants from us and that is why he says we must come as children. Dispite the fact that my little boy has left the Earth, the lessons his death has taught are immeasurable and I keep finding new lessons every day.

Progress

Yesterday was probably the first day since George died that I did not cry. There were several times I came close to crying but I didn't. I guess there is some sort of progress in that. My heart still aches terribly and I find moments in the day that I just want to be in bed and forget the rest of the world exists. I'm hoping that we can get a finalized death certificate soon and that the rest of the autopsy will be complete. It is like you are waiting for finalization so that you can move forward. I hate to be left in limbo dispite the fact I am almost positive that they will have no answers. We want to request copies of everything and then read through them and add them to our memory box that has now found its way into his bedroom.

The social worker from the school came over yesterday to finish getting information for Michael to go to school. She came to the house and you could see in her face from time to time the sadness she felt for us and the loss of the baby. His picture is above our fireplace and we have put monkeys and memerobelia on the top of it along with his urn. I bought this baby statue of a baby inside of angel wings and it is sitting on top of his urn. We picked a very simple one so that we could change things out for holidays and other momentous occasions.

Yesterday morning we had a lot of fun with the kids. Josh had taken all the pillows to the couch. We jumped from one pillow to the next. It was nice to spend this time with the kids and to see them laugh and spend time as brothers with mommy. Hugh took pics of us. Josh grabbed his monkey and we even took a picture with that. I think that we are going to take one of George's monkeys with us whenever we go somewhere so that we can still feel as if we are including him in our family things since dispite the fact he is not here on Earth with us, he is still a loved member of our family. I think it kind of gives us a way to still feel as if he is with us and to not be sad because he is not here physically.

Tuesday night we went out with Hugh's brother and his wife. It was such a great night out. I think we really needed it as much as they needed it. We miss the kids terribly. As time has gone on, our lives have just gone their own way and we miss the time that we use to spend with them. Now that the boys are older it will be easier for us to visit and spend time with them. We don't have to pack an entire room to just go and visit. They are older and in lots of activities so it has just been so tough for visiting. We miss watching them all grow up together and just having that family time they had when Hugh and I first met. Now that we have cut out most doctors and testing, we are not as wiped out and neither are the kids so it makes it easier to do this sort of stuff.

Hugh and I want to go away for a little bit. We have not decided if we want to take the boys or even when or how we are planning to do it. I think we just need some time away to be able to gather ourselves and really be able to move on. Once we have the finalized paperwork I think we will surely need it. The paperwork is going to be very detailed and hard emotionally to read. I know what it will entail and I know how draining it is going to be.

It is bad enough when your child dies, but to not know why and have to wait for the papers to say that is just terrible. You cannot find any closure until you get that stuff so it just drags out this whole thing in a very different way then it does when you know exactly why and what was entailed. There is a whole other factor added to loosing a child when it happens in this manner. Other parents who have lost a child understand the grief but they don't necessarily understand the other issues that come into play when there are no answers. I think that is why we feel as if we cannot move on totally at this point, there is no closure or answers and we wait in limbo.

The boys are all still having their moments. Richard had a rough day the other day. Joshua keeps asking me if we can just go get another baby. He misses George terribly and he was very close with him. There was a picture of a broken heart and he pointed to say that it was broken because George died and it was sad. At moments like those, you realize how simple children griev and find their own ways of trying to make sense of a world that now no longer makes sense to them. Michael will say he misses him randomly and has become super clingy, especially when Hugh leaves.

Tonight I am going by myself to a bible study program at our church. I'm looking forward to going out by myself to a place I can feel comfortable. Shopping is a nightmare no matter what type of store. We went looking for things for Michael's up coming party and it was just terrible walking down the isles seeing first birthday stuff, baptism decorations, and monkey party stuff. I just got sadder through each isle although I was happy to be able to do this for Michael. It is one of those bitter sweet kind of things.

There are a couple of books I plan on ordering about dealing with the death of a child. The SIDS foundation has sent us a book on SIDS and that sort of stuff. They are a good foundation, although sometimes their timing is just terrible and they make it worse rather then better sometimes. Many of the feelings that we have read about already that pertain to only sudden unexplained deaths have been helpful. Most people don't understnad loosing a child and even those that we know who do know that, don't understand the feelings and emotions also coupled with the sudden enexplained loss of a baby. We have found much healing through music and going to church programs. I'm so greatful for the relationships we have with one another and the ones we have with our children. I know that if they were fractured before this that we would be in a worse position then what we are in now.

Moving Night

If you ever believed that God put you somewhere and it was as if he was talking directly to you, that was me last night. Our church had their lent study program called On Earth as it is in Heaven. It was about what God promises and what we have to look forward to when we leave the life here on Earth for Eternal life in heaven. It is so unfathomable by so many of us to think of Eternal life and what happens when we die. Of course with the loss of George Hugh and I have been having our ups and downs dispite our strong faith and support.

The man running the program was just wonderful and you could see the faith he had just as he spoke. We went over the basics of church and how it has changed over the years all the way down to the physical structure of the places we worship. At first I was kind of bored by that part until it just hit me about the very meaning of the progress of church an faith across the years. He talked about how initially churches were built with a partition of the congregation from the altar. Some of the structures were very heavy an yet as years went on it all changed to even that not being something there at all.

What I took from that is the fact that these are man made things and how it represente our own path as a church community to move forward and also as individuals in on our own path to finding Christ and eternal life. As time goes on each of us struggle to understand faith. In the end it is only man's own desires that keep him from God and knowing Christ. The further you get in your faith the closer you are to knowing Christ and the eternal life he provided for each of us. In a way it is symbolized just by looking at the architecture of the church and how it has progressed over the years.

Man use to be kept from getting close to the actual ceremony and practice of faith across the years. This has slowly dwindled as now modern churches can be found to make no seperation between the congregation and those serving durning the ceremony. The church and beliefs have changed across the years just as those of us seeking answers and faith move in our own faith. Man is what keeps us from knowing God and our own spiritual growth and progress will make it so that when our day comes we can stand before Christ and be allowed into heaven.

We split off into groups with questions to work on that referenced passages in the bible that gave guidance and promise of being accepted into heaven. One of the passages caused some questions and that one passage surely needed more then the hour they had to truly understand and go over. It was about how finding one lost sheep caused such joy in heaven. One of the members of our church raised her hand and said she had a problem with that because it was not fair that those who are always good did not bring the same joy. I didn't get the assage myself at firts either.

It then begs you to think about how a flock of sheep works and the actual art of shepharding. First of all, shepharding is not an easy job. You are constantly walking up an down hills but having to overcome many obstacles along with good and bad weather along the way. It is very much like life and I now understand why they refer to Christ as a shephard.

Shephards and hearders have tools of the trade they use to help them. Branding is something not uncommon so there is no confusion as to who owns the sheep. It is painful but once you have that imprinting there is no going back and no one can mistake you for anything else dispite how far you may wander from your flock. That is just the way it is when you have accepted Christ as your savior. The road to get there is not easy and it is not promissed to be pain free. Once you have been called and accept that call, there is no going back because you are now one of God's children.

Then there are the sheep. Most of the time they stay together but keeping them all together is not easy and from time to time one will go astray dispite your best efforts to keep them all as a group. None of them walk the same steps to get where they are going but they get there eventually together as a group with lots of guidance along the way. It is by no means an easy road and some will be hurt or sick along the way an every effort is made to get them to the place made for them.

You then ponder about that one sheep that happens to go astray. It isn't always an immediate recognition that the sheep is missing and it is not always an easy task to bring that sheep back to the flock. That sheep is all alone out there and subject to the elements with no one there to watch it. Predators are all around willing to take advantage of the fact that sheep is alone. The sheep falls and falters getting scratches and bruises.

The shephard realizes that the sheep is gone and is out there searching high and low for that one sheep. It is the same way that a father or mother would look for a missing child...they would never give up until they knew what happened. He left the whole flock in order to find the one missing knowing they were together and in greater numbers they have more of a chance to get there together rather then that one sheep who has no one to be there and guide them. To me that is sort of like the fact we as a church learn together and support one another on a regular basis. Later you realize that someone has stopped coming or is just really struggling. Sometimes you never notice but that is why God is there. He is keeping track of the whole flock as the shephard does with his sheep.

Thinking back to the lost sheep. If the shephard does not find him in time, he will be left to become the prey of some other animal or terrible fate. If the sheep is found then that sheep is brought back to the flock. He still has all his wounds and although they may be treate or healed, the scars will always remain and will cause to make that sheep more suceptible to falling behind or being lost again some day.

We are all lost sheep at some point in our lives. The woman at our church did not care for the fact or think it was fair that the sheep that stayed together were left and that heaven did not cheer for them but rather the one lost sheep. THe thing is that we are all sinners. No one sin is worse or better in God's eyes then another. Sin is sin and we are all sinners. THe bible also states that it is how we handle those moments when we falter that are what Christ looks at on our judgement day. He is merciful and that is why he is the one we stand before in judgement.

One of the most touching moments was when he played the song Taste and Eat and played the slides from the presentation. It was then that I realized my little boy already had his judement day and stood there in front of Christ. It made me think of the gretness of that and my heart just swelled with that very thought and tears ran down my face. He was pure and was used in such a great way.

I remember years ago as I was trying to find my faith. My search for faith was a long and difficult road and I could not realize why I just could not come by that feeling so many people talked of. It was only when I realized my own personal hang up. I remembered thinking that I did not deserve to be forgiven. So many poor choices I had made and things I had done just made me unworth of Christ's sacrifice. THat very thought made me know that there was a greater purpose and that we all fall from grace. I was the one who had put on the expectations on myself and it was then that I knew all I had to do was believe in Christ and my sins were forgiven. It sounds simple but it isn't just that easy.

I don't profess to be perfect, I am as human as they come and I fall from grace just as everyone else does. It is that fact that Christ gave his life for our sins that is so much grater but also the same thing that gives me comfort in my son's death. I know some day I will be there with him and if he could do this and has already met his judgement then I am not afraid of that moment myself. I also belive that God used my son as he did his own to bring people to him and I cannot think of a greater purpose that someone can have on this earth and to be so honored that he chose my little boy.

Too Much Similarity

I just got an email from the doc doing the study at St. Chris for the testing of Mito through mouth swabs. He did all the boys this time around(George has never been done due to his age, and he had passed by the time we did this last round) Richard has come back without any issues yet again! With him having a different father this is of huge note to them and brings much curiocity in terms of research reguarding genetics. Joshua has come in yet again boarderline deficient in Complex I. Michael is still severe in both Complex I an IV per this test.

We have found out some recent information about Hugh's family line. His great grandmother also lost a child at a very young age to SIDS. This was his mother's grandmother! His brother(Hugh shares the same maternal line with his brother) and niece have had seizure(Joshua's first symptom was a seizure) issues throughout their lives. There is quite a bit of coincidence. I told this to the doc running the study and it is certainly intriguing to say the very least.

I also knew that Josh and George were similar in age when they both had their problems. Today curiosity got the better of me and I just decided to count the days. They were both 143 days old! Both of them had their issues at almost the same time too in terms of age broken down to the hour. With George we don't know the exact time of death or when his problem really started but we do know it was after 2AM. Hugh and I were just floored when we actually realized this. It of course will not change anything and we know that but there is way to much similarity for it to be written off, even the doc agreed with me on that. We now don't doubt(we suspected this after a conversation with the medical examiner) that a seizure could have been the very thing that caused George's death.

I remember holding George and the way his body felt and the way he looked it was similar to the way it was with Joshua. It was very much the same except Joshua was seizing after Hugh picked him up off of the couch. He could not remeber if Josh was breathing or not at the time Hugh went to pick Josh up.(questions asked to us by the medical examiner and SIDS group)We knew George was not but that he was still warm(the whole reason the EMTS took him to the hospital). Joshua's brain to this day shows no signs of seizures dispite the fact he had two grand mals in 24 hours and both were long in duration. We know the likelihood of them fining anything with George would probably be the same as it is with Joshua...slim to none!

It seems as if each day we keep finding out new things and there is just way too much similarity. This of course will not change anything. It is wierd how without looking for things they keep falling into our laps. With that being said, it surely causes lots of curiosity on many fronts and not just for us, docs too, to see if there is a connection to it all. I don't spend much time hunting for answers or info but find that it keeps finding me for whatever reason. The doc at St Chris of course had more questions after the results of these tests and the new family info.

Josh has been on different meds and diet them Michael. Right before the new testing we restarted Josh back on his vitamins. We found much better tasting ones and have been giving him them one at a time rather then having them compounded so we could see what worked for him and what didn't. He also has a better diet then Michael because he does not have as much tummy trouble or sensory issues when it comes to food. We also switched the boys to as much organic things as we possibly can. I've been shopping at Whole Foods and Costco to get as much of their diet switched to this since chemicals used on our foods cause a lot of issues with free radicals that can cause more dysfunction. Unfortunately, Michael still refuses a lot in the way of food. Josh's diet changed a lot when he was put on periactin in order to avoid feeding tube placement and migraines.

I don't know if anything is related but boy there is a lot of similarities with the kids. This has of course caused a stir in those studying our case. It just proves that there is so much not known about this disease and the need for research and awareness among the medical community. Even if nothing comes of the study and they can't move forward, it is not a step back. Everything that is done is a step forward because even if it is a failure, we know it doesn't work and that is as important as knowing what does. Without research and those willing to participate, there would be cures for nothing and that is how we look at it when we volunteer to participate in these studies. If they are not huge risk factors for the boys then it will be worth the baby steps they are making to treatment and a possible cure some day. We know it may never come in our lifetime or even that of our children but we know someday it will make a difference for those yet born that will have this disease.

On another note, Hugh and I have decided we want to work on putting together a scholarship program in George's memory. There are a lot of logistics we want to work out but we want it to be kept locally since our community has been so instrumental in the support our family recieves. Yesterday Richard crossed over and we did the ceremony at the Middle School. Richard told me my brother's name was one one of the stones at the school for a sports thing he earned in school there. With that I thought of how even though I was a great student I never got an award and then it made me sad to think of how my kids will probably not be one of those kids to get an award due to many of the requirements. It them sent me to think of how many kids have disabilities that make school and other htings difficult and they are some of the most awsome kids you will ever know...things don't come easy to them but they keep trucking forward to be their own sort of "normal". With my kids not being severly affected but still having limitations due to their disease, I see a need for these kids to be recognized.

We want to work with our district to give a scholarship in his honor to a kid who has limitations but shows great efforts to overcome them. In a nut shell, that explains our boys and we just feel that is so important. George was the very example of a person who changed many lives in such a short amount of time and overcame his own set of odds put before him. In order to fund it we want to hold an awareness walk/family fun day in Septembers(Mito awarness here in our township and state and also George's birth month) to raise the money and also the awarness needed for the disease.

When our township 8th grade class graduates, we would like to present an 8th grader with a plaque and a small financial amount to help them strive forward in thier personal efforts in school and life. It is a way for us to give back to our community and also support out son's memory and another child who just needs a little recognition for their personal efforts in life that come harder to them then it does to most. This is of course in just the thought process but something promissing that we feel is within our reach and something we can continue to do without taking time from our time needed to spend with the children we still have here.

Thank you all for your prayers and support each and every day. We are still having good moments and bad but life is still going on. Tongith we are going to church for our Lent study program titled "On Earth as it is in Heaven" about death and life after...we are obviously intrigued by this and look forward to attending.

Touched

We just got back from our Blue and Gold dinner with the boys. I can't tell you how touched and glad I was that I went. It was not akward by any means and they all seemed to just be there and exactly what I needed. I talked to a few of them while we were setting up. They gave our family the 50/50 and also gave us a donation towards the cost of the baby's service. I just cried as I hugged Patty, the woman who won the 50/50 an gave us her portion of it. They told me that even though Richard was moving on that if we need anything to let them know. What a wonerful group of people...they were just what I needed.

I will be back in the rotation once Josh goes into Cub Scouts when he gets to first grade. It won't be that long since he will be in Kindergarden this September. Richard still has not made up his mind as to what troop he plans to join. With George passing, we just have not had the time or ability to make the decision. My den is splitting up and each of them are going in different directions. It is amazing where the time goes. We watched as the tigers got their badges and I relized that all these boys were that size at one point. I was so honored to be part of these boys lives and to have that sort of ability to help them grow.

On a funny note. I got back and had on black tights. Joshua looked at me with his huge eyes and said "Mommy...what did you do? I looked at him as puzzled as he looked at me. He came over and touched my legs looking at them strangely and said "you turne colors" My leggings were black and he though my skin turned black...I just about rolled on the floor laughing. Leave it to him to make you laugh like that.

I'm so greatful for the way things turned out today. I really needed that more then I can even begin to explain! It was quite touching with people barely saying anything but it meaning so much. There has still not been a day that has gone by without me crying but today was one of the most moving for me besides his service.

Rough Days

The past two days have just been really bad for me. I miss him so much and right now I can't immagine it getting any better. Friday night I just sobbed horribly as Hugh and I held one another just yearning to hold him again and knowing we never will. It is so hard to watch other mommies who had babies around the same time talk about how their kids are now sitting and things like that...I just want to cry, knowing that would have been my boy too.

Both Hugh and I have been playing the what if game. In reality we know we can't change anything but the what if's still creep back into your mind. If I had gone in when I first intended to would he still be here? If I had changed his PJ's the night before, whoul that have helped? If panic had not taken over would he still be here? There is nothing that will ever prepare you for the moment you see your lifeless child. The very memories still haunt us.

I'm mad at myself for not getting him baptised when I had wanted to. I wanted to do it on the day my grandfather had passed. Instead I listened to everyone else, like I always do and didn't do it then. I thought I would have the spring with him and then everyone would be happy. Instead I am left with regret that I had to have some stranger do it when he was dead. There was nothing harder then having to go shopping for a chrstening outfit for my dead baby and know that he would be cremated in it rather then ever use it some day for his own children. It is just heartbreaking and will remain with me for the rest of my life.

Today Richard crosses over into Boy Scouts and my job as a cub scout leader will be over. I am relieved and sad at the same time. The ast two years have just been horrible for my family with both of my grandparents, Hugh's dad, and George all passing away. Right before all of this I asked one of my parents to co lead with me because that was just about when the boys old pediatrican closed his practice.

I knew we were going to have tons of visits thrown at us and I would just be swamped. Prior to the old ped closing practice we only had him and one specialist for each of the kids and we only saw that person randomly. After he closed, we have sceen about every single specialist that exists because our new ped is not comfortable with the kids care on his own. I don't know if we will be looking to change peds but the sad reality is that there really are none that are comfortable like our old doc was. I never anticipated this but was so greatful to have someone else on board.

Part of me wants to go to this since I know I have watched these boys grow but I don't know how in the world I am going to do this. Every single part of me just doesn't want to go knowing many of the people know and that it will be one of the first times to see them all in person. I'm just dreading the very fact that I will have to deal with the akwardness and hearing that they are sorry for something they didn't do. It is ironic how just a month or two ago I was looking forward to this and it being one of the first time's George would get to participate in watching one of his big brothers do something like this. He did go with me to the Dec pack meeting all decked out in his little santa hat and jeans...he was so cute and such a good boy! Little did I know at taht time, it would be the first and last time he would do something like that.

I am frustrated with this whole grief process. Some part of you just wishes you coul fast forward to the part where it gets better. You know the day will come but with so many set backs and out of the blue bad moments it feels as if it will never come. Trying to figure out how to associate with people who really don't know what you are going though is hard because you unerstand where they are coming from but are frustrated with it all still. Part of you wants to lock yourself in forever where the other part knows better. It is a constant struggle and tug of war with you wishing that you could have a remote control in this process.

This week there is a lot going on with the boys. We are preparing for Michael to start school in April. He has lots of appointments this week to work on that. Tomorrow night our church has a lent study program that we want to go to. Tuesday night we are suppose to go out to dinner with my brother in law and his wife. Going to these things keep you going but while you are doing them it is as if you are in some fog. It is kind of in a movie where a person is in a crowed room and everyone and everything in the backgroud begins to be blurry and you are left looking at the inividual. The world around their mind and what they are thinking is still moving and happening but that person is lost in their own thought process. I'm hoping for some better days and that the things we have to do run smoothly.