Fundraiser Success

The boys did such a great job, I couldn't be prouder. Together they raised enough to send two kids to camp for a weekend! That does not include all the in kind donations that were donated. Despite the publicity it got, we had very few people actually show up though. Although it was disappointing to some of the adults, the kids would never have known and thought it was the best party ever!

We actually met another family who had attended Comfort Zone and the mother was actually there the weekend Richard was as a volunteer nurse. The children had lost their father to cancer and they were so excited to see the article and were so supportive of what we were doing. We also made some great new friends with those who volunteered their time from the 4H club and the Alpaca farm. My family was there, my one aunt came up from Maryland. My cousin and her friend handled the tattoos and face painting for use. Some people from the church were there and a friend of ours was also there and a huge help. The one officer who had responded to our home that morning stopped in along with the woman from Walmart who helped us with connections. No one from Hugh's family came and as upsetting as it was for him, he handled it like a trooper and manned the door and played with all the children that were there. He truly is a great man.

A little girl at our church had her puppet show and did a wonderful job. The 4H club had a bunny, chicken, and duck with them. Jim from the Alpaca farm came with 4 of his alpacas. The kids loved all the animals. Michael had a special fondness for the alpacas and the gentleman invited us to stop by the farm with the kids. We had over 20 baskets we raffled off and did a 50/50. Of course we had a lot of food but especially a cake for our little monkey. It was had a Curious George on it and the kids all loved it. I was doing well until we sang happy birthday to him. I could not look at anyone for fear of loosing it and crying. Tears filled my eyes thinking of how very bitter sweet it was. After everyone had left except the deacon and my friend, I walked upstairs to the sanctuary and knelled at the altar. I just broke down in tears and thanked God for my son and for the blessings I had but also took that moment to feel the surmounting pain I had felt all week but kept to myself. My heart just broke thinking of our life and how much I miss my son.

I was exhausted to say the very least since I had been up since 5am. I was on my feet all day long until I finally headed home around 3:30pm. Hugh had left a little before to unload the van and I have to work today on getting that all cleaned up. It is raining and I am still very tired so it may have to wait until tomorrow or Tuesday sometime. My sister is suppose to be going in to be induced to have her baby tonight if she does not go into labor herself so I don't know if I will be doing clean up until later in the week. We will have to see how things go.

Hugh and I had gone to a bible study on Friday night at our church before we set up for the fundraiser that night. I learned that another church member had a grandaughter with a rare disease although I have known these people, I never noticed the dark spots on her skin. Hugh and I don't tend to look at people like most people do so neither one of us even picked up on her condition. It just happened to be mentioned by another member during one of the discussions. The rest of the night I could only think of them and our journey with a rare disease. It compelled me to write the family a letter and email it to them. They were at the fundraiser and I spoke with them along with their daughter about the long and difficult road that you are put on when your child has a rare disease. The gentleman actually told me that he was very moved by what I wrote and that I needed to consider writing a book or even children's books. That of course took me back since I was never considered the writer in my family and never had even considered it much.

I told him that I keep this blog page to document the path we are walking through the loss of George. The main reasons I do is so that people have a better perspective on what it is like to loose a child and survive. I also told him that I am very honest about feelings and emotions that come even if they have offended people. This page is not to give other's warm fuzzies but rather to display the very roller coaster of ups and downs and even if an emotion is insane I still write about it because I know I am not the only parent who lost a child that has had them and it gives a better understanding for this life situation. That moment you may feel that way but a few later it may be a totally different perspective that you have.

I feel people need to hear the good and the bad if they are ever going to truly understand this sort of tragedy when they have not walked the path themselves. Things I write are never directed at anyone but rather personal feelings and observations. I am going to copy and paste the letter I wrote to this family in hopes that maybe it will be able to help others who have been in our shoes or maybe just don't understand but want to understand what it is that we go through. It happens to give insight to a lot of things we have endured as a family and I have gone through personally.

The Letter I Wrote:

I just wanted to email you so that you had our correct email address. Also, I woke up feeling the need to email you regarding your granddaughter. I had not realized until last night that she happened to have a rare disease. I don't know what one it happens to be but as you know our family knows this life path all too well. I will never forget how five years ago our world was turned upside down when Joshua had his first seizure that sent us down this path. It took us over a year and a half, a trip to GA, and many disbelieving doctors to finally get a diagnosis. The diagnosis itself was devastating initially, it was a life threatening progressive disease with no cure or treatment. To say we were overwhelmed would be an understatement. Our news came in the mail from the doctor in GA and it took over 4 months for these particular results. The day I got them I was home by myself and I saw that packet and knew exactly what it was, it was the longest trip ever from the mailbox to our house. I knew in my heart he had this disease but seeing it in black and white was just something I was not prepared for and I remember sobbing alone as I read these results confirming my worst fears.

I however had my faith and although, at the very moment that I got the news, I was falling apart I know God was there carrying me. My favorite poem has always been Footprints in the Sand and it often reminds me that I am not alone no matter how much I may feel that way. After the initial shock I prayed and found much strength in the Lord and also in myself, a strength I never knew I possessed. I have to say I have never wanted this sort of life for myself, all I ever wanted was to be a good wife and mother...not a famous person or anything of that nature. As days and weeks went on and I watched my son overcome obstacles that were difficult for him but easy for other children his age, I came to learn that these "special needs" children are just "special".

I have learned more from my children than I have from any other person in my life. They amaze me every single day with their determination and lack to see their own shortcomings. The rely on their strengths and work with what they have. God has given them each special gifts beyond their peers in so many other ways. I watched as Joshua would loose his speech but we came to learn sign language, he would loose his ability to walk at times and yet find a way to still play and do the things he was determined to do. We learned to cherish the small things. I will never forget the day that Joshua recognized his own name being called, a huge feat for him, I sat there in tears so very proud of such a minor accomplishment for others but a huge one for him.

We were told that it was unlikely that we would have another child with the disease. Michael was born, and I knew right away he had the same disease. His pediatrician walked into my hospital room and looked at me and said, "You know what I am going to say?" I looked at him and nodded and held it together until he left the room and just cried. He too had a child with the disease and had God not placed me to work in his office years before when my ex husband went to prison, I know that the boys never would have been diagnosed. He has since remained a friend over the years even after he stopped practicing medicine and worked for an insurance company. I will never forget when my mother asked him at a visit "What is his life expectancy with this disease?" He looked at her and said "What is yours?" With that he proceeded to tell her he is not God and that he was told his son would be dead by the age of one and he was 15 years old at the time. He also told me that no doctor can give anyone a set amount of time that it was God's choice and only he knew. To this day those words still ring in my mind and heart...I found them very profound coming from a Jewish man who was a scientific person so when he said them the struck home in such a touching way.

George came along and we got much criticism from people for having more children. We were told we know that we have children with this disease and how could we have another knowing that they too could have this. Hugh and I knew something more than they did though, these children are special gifts from God sent to this Earth to teach those around them many life lessons we would not normally learn. We also realized that if God did not want us to have children he would not have been here. If people stopped having children because they knew that there was a chance they could die than the world as we know it would cease to exist. I can tell you, the moment that I held George I knew God was going to take him from us. I had this conversation with my sister only weeks before he passed away when she was devastated about her own miscarriage and confided in me that she knew she was going to loose her baby. She sat there in total shock saying that I shouldn't say things like that. I did not know when, where, or how but I knew he would not be here long. I had learned a while back that we are all on loan and that we just just don't know how long that loan will be for.

The day he awoke in God's arms we were heart broken but not angry. We knew there was a purpose to all of this, just one we did not understand. My belief is that children are a gift to this world and we have so much to learn from them. The lord says that you must come as a little child for a reason, and I found it so ironic that the lullaby I sang to George said just that...never had I sang that song to any of my other children. I remember being in the funeral home seeing and touching him one last time. I asked everyone else to leave me with him so that I could be the last one to be with him...I sang him his song one last time and kissed his forehead and asked God to please care for him until I can be with him again and to please tell him all about us and how much we love him. I had always planned for it to be the other way around, me teaching George about God, not God teaching George about us.

I do not keep the joy of my children to myself for I feel that it is very selfish to do so. Hugh and I have come to share both the good and the bad with people. We do not hide the bad stuff because there is as much to learn from that, if not more, than there is from the good. Often times we have be criticized and lost friends and family because we do this. Sometimes they take it as if we want people to feel sorry for us, but that is not the case. I think we just want people to have the whole picture. I feel that it is so important to share the ups and the downs for if you don't share the downs you don't know what Gods grace is truly about and how profoundly it can touch your life and change the very person you are even through tragedy.

With a new baby on the way, I would be lying if I said I was not afraid, however I know that she is meant to be here just as her brothers and that her life too has meaning. We have not opted for genetic testing because knowing if she has anything wrong will not change the fact that she will be born into our family. They cannot test for the disease her brothers have and we have just put our faith in God that he has plans for us all, much greater ones than we could ever expect for ourselves and our children. People think that we allow our children to suffer with a disease like this but I have to say that suffering is in the eye of the beholder. My children may not have much but they have what they NEED...care and love. You would never know there is something wrong by looking at them because they are happy and in the end that is what it is all about. We cannot stop anyone from suffering, that is part of life and it isn't always a bad thing...so many good things come from suffering, it is just painful and we fear it. I have come to refuse to live my life in fear because than I am not truly living. Each day is a blessing and no one is given tomorrow today.

I know that there is a God and that he sent his son to die for my sins and in the end that is what matters the most. I cannot chose that path for anyone, even those that I love the most. However, I can allow his works to show through me and what I do every day of my life in order to set the example and lay the foundation in someone elses life to receive the gift of forgiveness and eternal life. Shortly after George died, I remember praying to God about the pain of not being able to say goodbye to my son. With his leaving from this earth being so unexpected, he was fine that night I put him to bed, I felt this emptiness in my heart from not having that sort of closure and only being able to live with the traumatic moments that ensued from finding him in his bed. I did not want that to be the last memory of my son. One night I had a dream shortly after he died that confirmed my peace about where he was. I don't often share this with many people but I know God gave me that moment to say goodbye. I dreamed that I was holding George and I knew he was gone but I just held him like I did when he was here, with his little head on my chest. He was so content, God was there and although I wanted to say with George, God just looked at me and I at him and I handed him back my son. I was ok with it because I knew he was alright and that he would be taken care of(I had such a hard time since George was not baptized other then after he had died that I was very distraught about if he was truly in heaven, an old teaching from the Catholic church I was raised in.) but that I still had a job here to do.

I don't know why I felt compelled to write this other than the fact that I had felt it pressing on my heart since last night, I literally had to get up and just write it or I never would have gone back to sleep. Having children with a rare disease or any disease for that matter is no easy road and I am sure as a grandparent it is even harder for you. You not only watch your grandchild go through what she is going through but you watch your own daughter also. It is hard when you have a dream for your child to watch it shatter and not be what you expected it to be...you mourn the loss of a dream. I have come to know that God picks up those pieces and turns them into a piece of art. I am living proof of one of his many works of art.

I don't know if you have ever been oversees and happened to see one of the old cathedrals that uses the little glass tiles to create a beautiful picture but to me that is what we all are. If you take the individual pieces and look at them, they mean nothing but when they are put together just so they create the most amazing and breath taking sights you can ever see. The artist cannot see how it will ultimately turn out until it is finished but continues on in confidence and in faith that it will be perfect. Please know that if there is ever a way that Hugh or I can help or just be an understanding ear that we are here for you. Often times people don't ask us to do things or don't talk to us because they don't want to burden us with more than we have. Little do they realize we are doing God's work and that we are here for those very things. It is never a burden but rather a gift that God would be giving us by allowing us to help with his work. We pray for you all and whatever obstacles you are facing right now, they are not easy, but you do not walk alone.