Casting Crowns Praise You In The Storm

Why God?

Over the past few days I have sat and contemplated God and his roll in my life and why people in general are drawn to him. It finally came to me and just about hit me in the face. Why do people rely on God? Often times once you have found his presence in your life you come to know him on a personal level. Just like with any relationship this changes time and time again. As obstacles are placed in your life the relationship changes yet again. For me, since George died, I have often times felt alienated from the world I am now forced to live in and so very alone that I have come to rely on God to make it through the difficult times rather than a family member or friend.

I finally realized why! God listens without turning in his two cents every step of the conversation or turning it around to be about himself and his pain rather than listening to what you are saying. He has no need to try and "connect" and "understand" because he already knows your heart and just listens to it and never falsely pretends that he knows your pain...he does. We find shelter in his embrace because it is true and all knowing and you don't have to explain yourself or your actions, you can just be there. It is sort of like that one person you have in your life that without words uttered they know you need that hug and you can cry and sob and loose yourself for those moments in their arms without explanation or one word uttered or you just laugh together without having to say anything and know exactly what the other is laughing at.

With God, you also do not feel a sense of judgment. He isn't there telling you to go to therapy or take pills because he knows your heart is broken and this is where you need to be right now. He isn't talking behind your back to other family and friends giving his opinion on your life and how you screwed up or what you should be doing.You can be angry with him and he understands. When you need time alone you don't have to explain. Never does he put you on a guilt trip for a decision you have made or for choosing something for your life that you feel is best for you. You never get the I told you so attitude from him when you do make mistakes. It is the one place you feel safe to make mistakes or admit your humanity without that fear of judgment. He takes you as you are, good and bad, and loves you for every single part of it because he knows it is making you the person he has planned for you to be.

There are no false expectations with God. What you see is what you get! The only thing you need to have a relationship with him is to believe that he exists and that his son died on the cross for your sins. No hidden agenda or having to read between the lines. No meaningless conversations to be had. He knows your heart and you don't have to pretend you are someone you are not. You never have to put on that happy face because he doesn't want to see you sad and you should never feel guilty for it or that you have to always have it together. We are all sinners and no one is any better than the other because they have a better job or went to college or did everything that was ever asked from them or did things the "right way" in life. He of course would prefer you to do what he wants you to but also realizes that it isn't always the good things in life that shape you and that suffering is part of humanity that makes us all a better person in the end if you allow it to.

There is no way to earn his love, you have it if you want it. If you don't, he doesn't try to make you want it, it is all up to free will. He will call you to him but he will not force you to do something you do not want to do and wants you do do it of your own want. You can't earn your way into heaven by doing good deeds, there are no requirements like these that we happen to have here on Earth. That is such a relief and I now know why I am drawn even more to him in these difficult times. So many people have let me down or hurt me by things they have done/not done or said/not said. I have tried to not put expectations on them but sometimes things just happen and the added pain of these moments are what make you walk further away from those around you. Often times it is by no personal intent to hurt you but the fact they just don't understand you or your needs at the moment. They too have expectations and I have come to learn that when we have expectations of others that is when they fail us and we have failed them in return.

I don't want false relationships in my life. To be honest I don't have the time or the energy for them. They suck the very life out of you and leave you feeling drained, sad, mad, helpless, and alone. The energy requirement to keep these sorts of relationships going is mind boggling. I thought I had learned that lesson years ago when I finally opted to get a divorce from my first husband. Every single part of me didn't want to get a divorce for the fact I did not want to be a failure, but the relationship was so one sided that it sucked the very life out of me. Finally when I realized it would do the same to my son if I stayed, I decided it was time to end it. That was one of the hardest moments of my life. I felt like a failure on so many levels and did not realize at the time that there was more in store for my life. I remember the trips to the prison in the horrible weather, waiting for hours to see him for 15 minutes, and often times feeling like a criminal myself. I just felt it was my duty as his wife to stand by no matter what. Little did I realize that it was a very one sided relationship because he just was not able to give what I needed in our relationship and was probably to be honest never capable. So many times I just kept changing the things I needed from him and accepted the things I never swore I would. Eventually I was a stranger to myself who gave everything I was and had to a relationship that was doomed to begin with. There is no blame in this but rather a realization that I never wanted to admit to, it just wasn't meant to be.

Often times I have let that fear of failure creep itself into my marriage with Hugh. I remember in the beginning of our relationship how there was no way I was going to let him in and touch my heart the way I had let my ex husband for fear he would break it too. I had my walls up and still to this day have moments where they creep their way back into my life. Love leaves you purely vulnerable if you actually have an unconditional true love. I do however now have a realization that there is no fairytale ending and that marriage does not come easy and is something you have to truly work at all the time. There were moments where I was sure that our marriage would fail and that we were close to not making it work. With all that we have been through, the stress statistically even says we are going to fail! One thing I have learned about statistics is that all they are happen to be a bunch of numbers that mean nothing to us as individuals.

After George's death many people said that things like this break marriages up and that it is understandable. For Hugh and I, it has been the opposite I think. I have learned to rely on him and God in ways that I never did before. I no longer look for the approval from others in our families but rather do what is right for us and our little family here in our home. My priorities have changed and for the better. I no longer go running the minute someone calls and needs something done or try to please others just to gain their favor and approval in my life. We make decisions together and if no one else understands or approves that is ok because we aren't asking that of them. We also know God is with us and guiding us and our decisions and often times those around us just can't see that or understand that but we know God is speaking to our hearts and what we are doing is right even if those around us don't.

I've tried hard to work on that unconditional part of love which is hard for me. Often times growing up if I did not do what someone else wanted me to do they would be mad or if they did do something nice for me, it never came without strings attached that would be brought up at a more convenient time for them in the future. This always put a wall up that I thought it was right to love people as long as they made you happy and did what you wanted rather than loving them for who they are, good and bad and telling them it is ok that we don't agree or see eye to eye. Of course this is very difficult to do and I am not always good at it but I work hard on it every single day because I know it will benefit us all in the long run. I've tried to stop gossiping with people because I have found how hurtful it is to me and don't want to be doing that to someone else. This has left a huge void in some of the relationships I have but I know that this is where these relationships need to be now because they need work in other ways. All of us do this sort of thing from time to time without really understanding the long term damage it can do to an individual or your relationships. Unconditional love is not easy but it is worth the effort and gives you such a freedom.

I thank God every single day for my relationship with my husband and with the Lord. With all that we have been through I cannot imagine where we would be if we did not have God in our lives. I remember the day we got married and one of the passages that said about building your marriage on a strong foundation. After the service, my grandmother told me that as long as we had God in our marriage that was what we were doing and that we would be able to weather any storm that comes our way. It made me think of the service and how she was behind me with her hand raised in the air saying "Amen, Praise the Lord" At that time, I did not have that sort of faith although I had a strong faith. I've come to have a relationship with God that is not the drive through type where you come when you need something. Often times I wanted the faith that my grandparents had and never knew how to get there. George's death has placed our hearts in such a different place that I cannot imagine it any different.

My marriage has come to know this same sort of strength that my faith has. We don't just coexist in our home because that is what we are suppose to do. There has been a deeper love and understanding that I cannot even begin to explain. For the first time I can say I need my husband and he needs me and that we are there for one another in ways we never were before. It is more than Hugh or I just manning the phone or taking the brunt of some situation for the other person. It is a deeper relationship that we will turn around from, in 20 years when the kids are gone, and not find ourselves strangers sharing a house. We are here for one another the way God intended for us to be, no strings attached and loving each other for the person they are rather than the person we want them to be. Realistically that means that we will have our ups and downs but that in the end we still know the other person's heart and love them for who they truly are inside. I never have had this in my life before and although it is scary it is also wonderful.

I pray all the time for those who struggle in their marriages due to the many plagues of life here on Earth. It is often times easier to allow the bad stuff to take over and use the loop hole that life is hard that often times so many others understand. It is easy to call it quits and throw in the towel and yes there are times you have to do that but if you listen to your heart and pray about it, you will know what is worth fighting for and what is not. Often times we get what we NEED not what we WANT. I've learned to pray for God's guidance and will in my life and thank him for the small things and praise him in the storm (there is a great song by Casting Crows that goes with this very thought that I will post). That is no easy task to do and it requires so much of an individual. The struggle is worth the reward when you allow God to guide you in your life rather than take it head on alone with your own agenda.

If you feel a heaviness in your heart about something that is tugging with your head take the time to pray for often times it is God speaking to you...are you listening or are you following what others or you want to do. Listening to those subtle nudges by God are not easy and if you are not listening you will follow your head since it screams rather than whispers. It may be easier to follow your head but the reward is not the same since it was not God's plan for you. What are you loosing by having a personal relationship with him? If you believe and he doesn't exist you have lost nothing but if you don't believe and he does exist you are giving up the most precious thing ever. So why God...my question is Why NOT God?

Alone

After all the chaos of the fundraiser, the stress from the issues I am having with unemployment with bills piling up until they get their act together, helping the boys and my husband cope, and trying to cope myself I am just exhausted. I don't have it in me to hold meaningless conversations or keep small talk going. I've had people get mad at me for this but there is not much I can do about it everything I have is just being taken by all the rest of the things in life right now. Having to celebrate George's birthday without him was just so very hard and not many people will understand that.

Every single part of me wants to just shut the world out and be alone. I'm tired of having to explain things to people and try to keep it all together so that I can put my happy face on. If I am asked what is wrong one more time I think I will loose it...it is ok to be sad, my son is dead. I can't be happy all the time. Not to mention our world just keeps seeming to get harder and harder to deal with, with more and more obstacles thrown our way. We know that it will all work out in the end but I just don't want to have to explain it to anyone and relive the terrible moments over and over again.

Every single time I think it is bad I think of Job though. I know that if he could lose everything and still survive we can do it too. Both Hugh and I know that right now God wants us to be patient and that things will work out in his time. That is not to say it is easy and that we both haven't had our moments where we want to just fall apart. I am so grateful we have on another for moments like the ones the two of us have had over the past few days. All that we are going through and feeling are completely normal for what we have been through.

The kids have been talking more about George lately as they too learn to try and live without him here. Richard starts a group counseling next week with the people who held the local grief camp. His guidance counselor and teachers are now all aware of his situation and his counselor already spoke with him. With the added stress of a new school I just wanted to make sure he had some outlets to speak with others like him. Josh and Michael both have had their moments but unfortunately there are no programs for children their age so Hugh and I are left to try and help them cope with this all which itself is a challenge when we are still trying to cope ourselves.

We are planning to take things easy the next few months until the baby comes. There are a few things planned but I am hoping for no surprises and just to stay low key to give us all time to ourselves that we need. Both Hugh and I have learned to be independent from those around us but to be dependent on God. It surely comes hard for those who were used to the way we were before George died but I just feel God wants us to be somewhere else right now. I don't know where that is but I have learned not to doubt his callings for our lives and as hard as it is, it is all something we need to do right now.

Life will never be the same for us but that doesn't mean it has to be bad...it just means it will be different. Sometimes getting there just isn't easy but we have faith even when those around us don't understand or pass judgment we know they are not walking our shoes so they will not understand even if we were to be able to explain it to them, which we just can't. This is just something that you don't understand until you have been in the thick of it. I can say that from experience since I watched so many around me loose their children and thought I understood it but boy I surely didn't.

This whole thing is something you can never wrap your head around until it happens to you and even then, it is so foreign and just exhausting in every way possible. The times it becomes overwhelming are the times you just want to be alone so that you don't have to explain yourself or pretend to be someone you just aren't. Ironically even when there are people around you, you feel alone, all of these things are just par the course as I have been told from many others who have walked this path. I'm so grateful for those who have been put in our lives to help us through this but we both know that no one can fix it and that we need to rely on our faith to see us through the moments like these.

Mallory is Here

My niece Mallory Nicole Faith Sworaski was born late last night via c-section to my sister and her husband. She weighed in at 9lbs 1oz and 21 inches long. I was fortunate enough to be with my sister and her husband most of the day as a support person in the room while she went through labor. By the end of the night there had not been enough change and with the suspect of a big baby and Mallory's heart rate starting to dip here and there, they felt it was safer to do a c-section.

Things of course happened fast and my sister and her husband headed through the same doors Hugh and I had gone through only a little more than a year before ourselves. George was born at this same hospital by the same doctor who delivered Mallory. Many times as I took at trip to the room where they kept the ice my eyes glanced at those doors we had entered just a year before to bring George into the world and my eyes fell on the recovery room where I waited patiently to see my little boy and hold him for the first time. It was odd to be on the other end of it all and a spectator to such a miracle. Of course emotions ran high for me and have throughout my sisters whole pregnancy and mine.

The very thought that we would be back here in just a few short months became overwhelming to me. I was grateful to be able to walk the halls and have those memories one time before Gabrielle came so that the day she is born we are not taken back by the emotions for the first time. We know that the day she is born will be extremely emotional for us for so many reasons...I know there won't be a dry eye that day from either of us. This whole pregnancy has just flown by and I just pray that she has a long healthy life and that we never have to relive the nightmare of loosing another child. I know they will put her on a monitor and all of that but I'd be lying if I said I was not scared out of my mind. Seeing Mallory just reaffirmed my excitement and fear and all those crazy normal mixed up feelings. I can't wait to finally have her in our arms though. It will be so very bitter sweet. I thought about how I had hoped George would get to meet Mallory and be there to welcome her into the world...it was a sad realization that the dream of that was just that...a dream. The thought that he will be a big brother but never have met his younger siblings is just such a sad hard feeling to shake. Our reality is so very different than I had thought or had hoped for us all.

The boys are so excited and want to see her. Hugh told them this morning that Mallory was born and they wanted to see her. He showed her pictures to them and the ooh's and ahh's were non stop. All of them wanted to skip school and go see her! Of course there was no way we were opting for that. I also want to give my sister some time since I know how tough it is to have a c-section. With this being their first baby and they both have tons of friends and family, I also don't want to intrude or overwhelm them with tons of visitors especially since I know how crazy the boys can be. Hugh and I don't really get visitors like that but I know so many other couples like the two of them and it is non stop visits and it really becomes a lot to handle.

Until now, being pregnant has just not been real to me. I don't know if it is just because she is baby number 5 and each one seems to go so much faster. It seems so very surreal this time around. We have her room somewhat together but still have lots to get...maybe once we get some of that stuff it will seem more real but I have a feeling it won't be until she is here. Even then, I really think this is just going to be very different and more like being a first time parent all over again. I don't know why but only time will tell. For now we will enjoy being an aunt/uncle/cousins to Mallory. Please keep them in your prayers.

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.