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Post by battenmoma on Jun 7, 2009 14:59:47 GMT -5
This is something that has bothering me for some time. My child has LINCL. We are beyond the beginning stages, but not yet to the final stages. We live very close to many members of my spouse's family...parents, grandparents, aunts, uncles, cousins....Everyone feels bad for what has happened to our child.. They all say they love our child and want to help in anyway they can. I have told them the best thing they can do is just stop by. Come in to see how things are going. Our child loves to hear familiar voices. I am not asking them to stay for hours, even 10 minutes would be good. Nobody ever stops by. It is from my side of the family as well. Even my child's grandparents who live 4 miles away can't seem to stop in. They both drive by on their way to work (literally about a block from our house). Has anyone else experienced this? I am feeling myself becoming bitter and resentful to everyone. My spouse thinks it is just because they don't know what to say or do. I think that is crap. They don't have to come here to comfort us or take care of our child when they are here. I just want them to visit. I will have no time for any of them saying "If only we could have spent more time..." when it is too late. I have told everyone that I don't want them to feel like they are imposing. Stop anytime. Does anyone else get this?
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Post by Teresa on Jun 7, 2009 20:36:13 GMT -5
Trust me I make no excuses for any family member. My son's grandparents on my side (my mom & dad) and my sister are the only ones that come to my place now. I have 2 brothers. one lives a mile from me and the other lives 5 miles from me and they don't ever stop by and they pass my house several times a day I mean the road that I drive on to turn in my drive they are on and pass my house. It hurt at first and still sometimes it does but I think they stay away because they cant handle what my sons future holds. The out of sight out of mind saying. We still go to birthday parties, cookouts, holidays and they are all caring and loving to him. I think family members sometimes do not know how to cope with it. As a parent with a child that has battens we don't have a choice. And as far as My son's dads side he does not see or hear from them. So sometimes even a dad of the child cant handle it. Trust me I make no excuses and I voice my opinion about it allot. Your not alone.
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Post by corrina on Jun 8, 2009 7:54:23 GMT -5
I think this hits the nail on the head. We don't live near anybody, they all live in different states than we do so I have not expirienced this with my son so much *but* I've seen this before. My dad can't handle the decline of my grandparents(his parents) so he avoids going to see them even though they live in the same very small town. I used to work with alzhiemer's patients and I saw the same thing with their families.
One thing I tried to do with my patients in the nursing home was to talk positively to their family members. I would tell them something funny or sweet their family member did or said to me. I would also talk to the patient while their family member was visiting just like I would talk to any other person to show the family member that their parent, grandparent or sibling was the same person they were before they got sick.
Thats the only advice I can offer. I can't say how much it helped or not but it made me feel better. Since you know all the parties involved well, when you do see them you can talk about times they had with your child when your child was still active. Include your child in the conversation just as you would a typical child of the same age.
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Post by John Heuchan on Jun 12, 2009 10:01:17 GMT -5
I agree that some cannot handle it, but also remind friends and family to stop by. Sometimes, it is not the coping, but they feel that they would put more of a burden by stopping by and not realizing that it would help more than it hurts. I just ask the to call first if possible.
We remind friends, please feel free to drop in. Sometimes timing is bad sometimes it is good, but they understand.
Until we had Nick's diagnosis, we stayed away from friends that were having medical problems, because we felt we would be in the way. Now we understand, that it just makes them feel worse, because they feel like they are not wanted anymore, event though that is the farthest from the truth.
and by the way Thank You to the real friends that know when it is just too much a will show up to divert not only the child, but sometimes us the adults.....that do not know which way to go.
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Post by Nancy Peterson on Jun 12, 2009 16:05:14 GMT -5
This such a sad, but common situation. I have 6 brothers and sister that live out of town and my husband has two siblings in the area. His family showed up for holidays we had at our house and a few of my family made duty visits every few years. Of course, I got the periodic phone call. I don't think any of them made conscious decisions to stay away. Some had busy lives of their own. And I think they assumed we had other support. Whatever, it hurt and I was angry. They would make donations when there was a quilt raffle, but only 1 every made donations at any other time. After my son died, my most supportive sister told me that the reality was my life was too painful for them to deal with. I agree, I could barely deal with it! It is was it was. I got by with a very few special people that were there when I needed them. Starting in 1993 I began attending conference. It was the lifeline that filled up my cup to get me through the year. My Batten family became my support family. Without all of you I don't know how I would have made it. I have learned that family is not always defined by blood. It is hard, but try not to waste your limited energy on anger. Our children are a true gift to all who meet them. It is our families loss when they don't participate. My son has been gone for almost 4 years. Very little time ever passes without running into someone that knew him. They always have a special memory to share. So try to redefine family and not waste these precious moments on anger or sadness. Take joy in the special souls you meet along the way that do love and enjoy your child, even it is just for an hour. Your child has blessed their lives and they have received the gift of knowing a Batten child. Nancy
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Post by Peggy D on Jul 4, 2009 6:39:37 GMT -5
You are NOT alone, believe me. My son Chris was diagnosed in 1999 and died in 2004. I have 5 siblings and my husband has 4. ALL in-laws lived between 15 - 45 minutes away. My mom and my one sister were the only 2 who ever saw my son on a regular basis. With my family, it was a combination of selfishness (too busy) of some and denial from others. My brothers definitely could not handle it and until this day I don't think either of them really knows exactly what Batten is or does. I agree with your comment "I think that is crap". With my in-laws, there was tension prior to diagnosis. After diagnosis, I see it as a definite decision not to come around or call unless we asked or called - which wasn't happening. I think their grown adult kids followed their lead just to keep peace with my mother in law. What I could never understand was that my husband's older brother was killed at age 26 in a construction cave-in accident. They knew first hand what it was like to lose a child, and still could not find it in themselves to put things aside and be a part of this little boy's life. The last time we saw in-laws was 2001, and the next time was at Christopher's funeral. NONE of them will ever have any idea of the beautiful life they missed being a part of. That old saying "you can't choose your family but you can choose your friends". Not so. We made choices long ago after realizing who was there for us and who was not. I have friends who are more family than my own family, through thick and thin. It was not an easy road - people thought it was odd that our families were never around for picnics or fundraisers. We parents deal with enough medical issues, fights with insurance companies, school districts, etc. The resent and bitterness - we realized early on not to waste our extra energy and time dealing with selfish people - it was much better spent laughing and being with people who cared enough to put aside their own fears and be there with you to laugh and enjoy every minute with your child. There is never any easy or right answer when it comes to family, you just have to make the best of it and not feel guilty of choices you make. You will find you'll do whatever it takes to give your child the happiest and most fulfilling life they can have for the time they are with you. Good luck -you're not alone.
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Post by battenmoma on Jul 14, 2009 12:12:14 GMT -5
Thank you for the replies! it has been extremely frustrating b/c they don't take the time, yet they think their opinion matters. I am sure my name has been dragged thru the mud on more than one occassion recently. I don't care to go to weddings or showers or birthday parties for any of them. They grill me with questions, yet never seem to put that much effort into us outside of that moment. We have a new baby coming in the family (not me) and a comment was made about how great it will be because our little one is in the hospital and sick all the time...wait a minute here!!! So when one isn't perfect, you just wait for a better one. Stupid! Who would be stupid enough to say it to my face??? My Mother-in-law. I could go on and on.....
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Post by corrina on Jul 14, 2009 13:48:54 GMT -5
Thank you for the replies! it has been extremely frustrating b/c they don't take the time, yet they think their opinion matters. I am sure my name has been dragged thru the mud on more than one occassion recently. I don't care to go to weddings or showers or birthday parties for any of them. They grill me with questions, yet never seem to put that much effort into us outside of that moment. We have a new baby coming in the family (not me) and a comment was made about how great it will be because our little one is in the hospital and sick all the time...wait a minute here!!! So when one isn't perfect, you just wait for a better one. Stupid! Who would be stupid enough to say it to my face??? My Mother-in-law. I could go on and on..... Wow! just, wow. Of course a new baby is something to be celebrated. I love it when a family member is expecting or has a new baby but to say it will be so great because the current one is sick, well thats just wrong. I'm so sorry she said that to you.
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Post by Jo Ann Hill on Jul 16, 2009 10:56:59 GMT -5
I don't know what to say that the others haven't already said to you. I have the exact same situation. Family so close but yet so far. Resentment, anger. It's so not worth my effort anymore to feel that way, I take my energy and use it towards my Angel. Pray. Pray for stregnth, pray for peace, pray you will always be able to take of your children.
Sometimes friends will always be there, consider them family in your heart.
Life is full of blessings, you have to clear the bad out of your head to sometimes see them. Stay strong!
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Post by Teresa on Jul 16, 2009 15:12:45 GMT -5
That is so sad that she said that to your face. It is even sad to me that a grandmother would even let a thought like that come to mind, let alone come out of her mouth.
I do not let talk bother me anymore. I keep in mind none of them have walked in my shoes and I hope they never have to.
So sorry, Teresa
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Post by Jessica on Jul 20, 2009 15:04:14 GMT -5
We kind of hit the same problem. There has been alot of people that have shut down when we told them our daughter Nora has CLN2. There's alot of people that can't handle the devestation, but for those of us living it we have to. Little children are the innocence in life and it affects others whether they acknowledge it or not. But what I did was I said I'm gonna fight for my daughter, Nora. "I'm going to raise awareness and raise funding" and" I'm not gonna stop until I can get her exactly what she needs." If you have the fight attitude to combat this illness for yourself and your little one, other people will follow suit and it will turn around. I feel so horrible that we have all have to experience this awefulness of this disease. But if we stick together and take charge, we can get a cure faster.
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