Post by Amy Lombardi on Apr 1, 2009 9:06:55 GMT -5
Subject: One of those sad, upsetting days
Name: Michelle
Date Posted: Jan 14, 09 - 8:23 PM
Message: I have okay days and really sad days. Everyday I look at my precious son with extreme heartbreak & mental torture. I have wonderful parents that give mental support & a wonderful counselor, but, sometimes nothing helps, you feel like the only one on the planet, the majority of the people you know & meet don't have a clue and don't want to know... I have heard a lot of,"Everything happens for a reason, There is a lesson to be learned", etc.... So, may I ask you, what has watching your precious children going through this horrible, cruel disease taught you??? Am I suppose to be at peace with this? My son is going to be 10 on Valentine's day. He has late infantile. His regression started around 13 months old. From newborn to 13 months I thought he was ?collickie? My heart goes out to all of the parents,siblings,grandparents and the strong soldiers that have this disease. Forgive me,sorry if I sound harsh, this is obviously a sad day.
Name: lincldad
Date Posted: Jan 15, 09 - 4:12 AM
Email: Click here to Email
Message: I think you sound normal. Good luck making it through the day.
Name: Darlene Royalty
Date Posted: Jan 15, 09 - 4:57 AM
Email: Click here to Email
Message: Michelle,
I have two girls with Battens and we lost Sandy in Sept. 2007. I have had to deal with this for 20 years with the blindness and 14 years with the Battens. I think I have heard every “Cheerful” expression there is. We all know what you are going though. Every mother, father, sister and brother knows what you are going though. I think what gets me though all these years of worry, stress and sadness is I believe that there is a reason for this. I have seen and heard the reasons. My girls have touched so many people. They have made people stop and think about their own children. Our children are here to minister to others. I have had teachers come up to me and tell me what a “Blessing and honor” it was to be a part of the girls’ life and school time. I received a letter from a parent who said she gave her child a hug instead of punishment one night because she read about us in the paper. I have gone though every emotion there is, from anger, hate, pity, love, sorrow and all the others that give us those bad days. I have a right to feel those emotions. We have been dealt a really bad hand here and we have to try to win the pot. (Sorry for the poker thing) I have worked with a therapist for almost 12 years and I still struggle, I have depression so I take Zoloft, which is the best help. And I have my faith. I can look at other Batten families and say, “Man I don’t have it so bad, I wouldn’t want their life”. We all have coping methods that we use and I believe you will find yours. You have a right to your feelings, but maybe you could look around and see what effect your child is having on those around you, maybe that will help you feel better. I feel I have been though all the stages of Batten Disease and it SUCKS, but you will get through this. We have the privilege of taking care of real live angels. It is a great job and a burden. I hope that I have helped. We each must find our own path and journey, how we make that journey is up to us. I will keep you in my prayers so you will find the peace you seek to help you get though and find your child’s purpose in life. I think back on our lives and I don’t want to have “If only” thoughts but I wish I had enjoyed the girls more when they were active. But I love to cuddle and hold them now and it brings me great peace and joy in my heart. Take care and my God bless you and your family. Darlene Royalty
Name: Corrina Dahl
Date Posted: Jan 15, 09 - 9:49 AM
Message: Michelle,
You have every right to feel the way you feel. I think we've all been there and will be there again. I think Darlene said it so well. I can't say it any better than she did.
It breaks my heart to see what my son is going through and it certainly isn't fair to him or us that this has happened but I see how he has touched lives. I especially like to think about the kids he has met over the years. I know by talking to teachers and parents that he has had a real impact. I take comfort in that.
I love that we have this board to come and vent our frustrations and talk about things and get support.
Name: Nancy Peterson
Date Posted: Jan 15, 09 - 4:11 PM
Email: Click here to Email
Message: Michelle,
All is true that has been said by the others. This is a very horrible disease. There is a reason it is referred to as the worst childhood brain disease. I lost my angel 3 years ago at the age of 26 (JNCL). There are no words to describe what you go through and there is definitely no answer to the question "why"? People mean well with their platitudes, but they don't realize that it just makes us wonder why we were chosen for this horrific experience. Thank God he is a loving God and does not give us disease. Being human makes us flawed. I have always believed that if I ask and listen, God will always give me the tools to get through each minute. There isn't a Batten child I have met (and going to 12 conferences I have met many) that was not a special human being and beautiful beyond description. Few outsiders can really understand unless they have walked in your shoes, but many try. Every minute is precious, even when it is so difficult. The good and the bad are part of the process. As mothers' we do our best and no one should judge. On those really dark days, you need to take a break. Do something for yourself and rejuvenate your heart and mind. It is very important. You will survive this, there are many before you that are walking proof. You are a member of a very special family. We are all here for you and though we have never met, we are all in every Batten family's heart. Have a good cry as often as you need it. I am glad you shared. You know what? It is not fair. No way around that. Hugs and prayers to you. Nancy
Name: Michelle
Date Posted: Jan 14, 09 - 8:23 PM
Message: I have okay days and really sad days. Everyday I look at my precious son with extreme heartbreak & mental torture. I have wonderful parents that give mental support & a wonderful counselor, but, sometimes nothing helps, you feel like the only one on the planet, the majority of the people you know & meet don't have a clue and don't want to know... I have heard a lot of,"Everything happens for a reason, There is a lesson to be learned", etc.... So, may I ask you, what has watching your precious children going through this horrible, cruel disease taught you??? Am I suppose to be at peace with this? My son is going to be 10 on Valentine's day. He has late infantile. His regression started around 13 months old. From newborn to 13 months I thought he was ?collickie? My heart goes out to all of the parents,siblings,grandparents and the strong soldiers that have this disease. Forgive me,sorry if I sound harsh, this is obviously a sad day.
Name: lincldad
Date Posted: Jan 15, 09 - 4:12 AM
Email: Click here to Email
Message: I think you sound normal. Good luck making it through the day.
Name: Darlene Royalty
Date Posted: Jan 15, 09 - 4:57 AM
Email: Click here to Email
Message: Michelle,
I have two girls with Battens and we lost Sandy in Sept. 2007. I have had to deal with this for 20 years with the blindness and 14 years with the Battens. I think I have heard every “Cheerful” expression there is. We all know what you are going though. Every mother, father, sister and brother knows what you are going though. I think what gets me though all these years of worry, stress and sadness is I believe that there is a reason for this. I have seen and heard the reasons. My girls have touched so many people. They have made people stop and think about their own children. Our children are here to minister to others. I have had teachers come up to me and tell me what a “Blessing and honor” it was to be a part of the girls’ life and school time. I received a letter from a parent who said she gave her child a hug instead of punishment one night because she read about us in the paper. I have gone though every emotion there is, from anger, hate, pity, love, sorrow and all the others that give us those bad days. I have a right to feel those emotions. We have been dealt a really bad hand here and we have to try to win the pot. (Sorry for the poker thing) I have worked with a therapist for almost 12 years and I still struggle, I have depression so I take Zoloft, which is the best help. And I have my faith. I can look at other Batten families and say, “Man I don’t have it so bad, I wouldn’t want their life”. We all have coping methods that we use and I believe you will find yours. You have a right to your feelings, but maybe you could look around and see what effect your child is having on those around you, maybe that will help you feel better. I feel I have been though all the stages of Batten Disease and it SUCKS, but you will get through this. We have the privilege of taking care of real live angels. It is a great job and a burden. I hope that I have helped. We each must find our own path and journey, how we make that journey is up to us. I will keep you in my prayers so you will find the peace you seek to help you get though and find your child’s purpose in life. I think back on our lives and I don’t want to have “If only” thoughts but I wish I had enjoyed the girls more when they were active. But I love to cuddle and hold them now and it brings me great peace and joy in my heart. Take care and my God bless you and your family. Darlene Royalty
Name: Corrina Dahl
Date Posted: Jan 15, 09 - 9:49 AM
Message: Michelle,
You have every right to feel the way you feel. I think we've all been there and will be there again. I think Darlene said it so well. I can't say it any better than she did.
It breaks my heart to see what my son is going through and it certainly isn't fair to him or us that this has happened but I see how he has touched lives. I especially like to think about the kids he has met over the years. I know by talking to teachers and parents that he has had a real impact. I take comfort in that.
I love that we have this board to come and vent our frustrations and talk about things and get support.
Name: Nancy Peterson
Date Posted: Jan 15, 09 - 4:11 PM
Email: Click here to Email
Message: Michelle,
All is true that has been said by the others. This is a very horrible disease. There is a reason it is referred to as the worst childhood brain disease. I lost my angel 3 years ago at the age of 26 (JNCL). There are no words to describe what you go through and there is definitely no answer to the question "why"? People mean well with their platitudes, but they don't realize that it just makes us wonder why we were chosen for this horrific experience. Thank God he is a loving God and does not give us disease. Being human makes us flawed. I have always believed that if I ask and listen, God will always give me the tools to get through each minute. There isn't a Batten child I have met (and going to 12 conferences I have met many) that was not a special human being and beautiful beyond description. Few outsiders can really understand unless they have walked in your shoes, but many try. Every minute is precious, even when it is so difficult. The good and the bad are part of the process. As mothers' we do our best and no one should judge. On those really dark days, you need to take a break. Do something for yourself and rejuvenate your heart and mind. It is very important. You will survive this, there are many before you that are walking proof. You are a member of a very special family. We are all here for you and though we have never met, we are all in every Batten family's heart. Have a good cry as often as you need it. I am glad you shared. You know what? It is not fair. No way around that. Hugs and prayers to you. Nancy