How do you get family members to understand this illness? My husband and I are having a problem with his parents and I'll try to made this short.

This past year, we were suppossed to take a trip with my husband's entire family to Disney World. When my daughter was diagnosed with POTS in March of 07', they decided to wait a year. FYI-my in-laws live very close and spend lots of time with my kids so they know what's been going on with my daughter and how severe she is. Anyway, 3 months ago, they announce to everyone that they're going to pay for the entire trip for everyone for spring of 09'. My husband and I were upset because we didn't understand why they would offer now when our daughter wouldn't be able to do much and we didn't know if she would even be able to handle the trip. At the time, we said we would just wait and see if she improved at all.

Now, my husband and I decided to tell his parents that we probably wouldn't be able to go. There are just too many factors that could make the trip a diaster for our daughter and us. My husband talked to them and couldn't believe it when they said they would still be going anyway without us! I was so mad and upset when my husband told me. I've always loved my in-laws and now, I feel betrayed and incredibly hurt. I can't believe that they would go without my two kids! Am I being selfish in this? How do I handle this? I told my husband that I'm going to have to tell them my feelings or it will eat me up inside. I'm afraid of what they will say and I don't want this to hurt our relationship any further than it already has. I just don't understand how they can't figure out why this wouldn't work. My daughter can barely sit up on her own right now, can barely walk, is bothered by the heat, and has insomnia. She wouldn't be able to go on any of the rides and their answer to that? "She could lay by the pool at least." Both my husband and I have told them what the doctor says about our daughter's POTS and how it may take years before she feels better. How can they be so unrealistic? Or completely unfeeling? The other thing they told my hubby was that maybe one of us could go and take our other daughter. I don't think I could have any fun with only part of our family along.
Anyway, thanks for letting me vent and say some extra prayers for this situation, please?

Brenda

Oh Brenda,

I feel for you so much. My mother-in-law has NEVER understood anything about my husbands POTS, and she is his own mother!!! She thinks that he can just go and go without anything happening. Mind you that he has had this for 7 years and has been feeling so well for these past few months, but I still worry how long this will last. When he is hospitalized, she does not go to see him, call him or even offer to watch the kids for me so I can be there with him. His last spell actually happened at her house and she was mad that I came home and called the doctor for a direct admit and would not let me call the ambulance to take him to the hospital. She even went as far to say that she will never have us for dinner again if this is going to happen!!!! Needless to say she and I do not see eye to eye, but I bite my tongue ALOT!!!!

In your case, I would wait until the trip gets closer, you NEVER know how your daughter will feel when the trip comes. And I do not blame you for telling them how you feel, she is your daughter and YOU know what is best for her. It will only eat you inside if you hold it in and that is not good for anyone. I would try to telling them calmly how this has made you and your husband feel. But like I said before, you never know how your daughter will feel in a few months. I will be praying for you also.

If you need to vent more you can PM me or email me at tchilders99@yahoo.com

God Bless Tammy

Hey, it's not just mother-in-laws. My stepmother has been the biggest thorn in my side. Popular quotes i've heard from her are "Oh i don't believe that" or "there's nothing wrong with you". Sadly for the longest time she had my father believing her till he just couldn't deny it anymore. People who are supposed to be the closest to you often can be the least supportive. I have learned to find support elsewhere in friends, neighbors, ect.

I'm going to put a different spin on this....it sounds as though your in-laws are taking the ENTIRE family, not just themselves and you, your hubby, and daughters. If that is the case, then it is right that they go ahead and go because there are others involved. It sounds as though they try to be understanding and they do recognize that she won't be able to fully participate but that they are thinking of the ENTIRE family.

Please don't take offense - just looking at it from a different perspective.

And if I'm reading into it wrong - and they truly are like TammyC's mother-in-law where they don't understand then I would agree with your being upset.

Maybe, you could talk wiht them and make arrangements for a smaller trip or activity for your daughter (something local on a good day?). This way she doesn't feel so left out?

Brenda...I would also like to encourage you to go on the trip and make the best of it. No, things won't be perfect, but encourage your daughter to enjoy it as much as she possibly can! It's also not fair for your other child to be punished for being healthy.

Chronic illness is absolutely no fun, but sitting around and moping about it doesn't do anyone any good. I'm not saying you're doing that, but please be thankful that your inlaws are willing to foot the bill so everyone can have a good time. It's no one's fault that your daughter is sick, and no one should be punished for it.

Try to chill out a little and make the most of the situation. Life's not perfect, but it's too short to miss out on great opportunities like this!

I don't know your situation, so please don't take offense. I just feel like you'll have regrets if you don't go. And yes, you may also have regrets if you do go. Take the chance!

Well, the scale of my scenerio and story are not that of Disney, but I can relate and have views of both sides of the situation you describe. My in-laws have taken my kids to Myrtle Beach for the past two years. They all love it. I have never seen an ocean and they all know that I would dearly love to do that, so my in-laws rented a larger beach house this year (before talking to us) and 'informed' us that we were all to go this year. I knew that I could not make it. It caused a lot of hard feelings. I told my mother in law that I would not be making it because of the difficulties that I was having and that I would not be able to "do" anything but lay around all the time anyway. She had the same type of response that your in laws had. She thought that I should be perfectly content to lay in the condo and sleep. I guess she felt that the change in bed to sleep in would be a real treat? She suggested that I not 'be selfish' and ruin the kids' fun. I told her that she was perfectly welcome to take the kids with them as they had done the prior year and she kept telling me how much she, her husband and my children were looking forward to my husband and I being there as well. Up until two days before the trip, she was still waiting on word from us that we would be going. We stayed home. My children went.

I could have gone. I could have stayed in the condo and waited while my entire family went to the beach, went site seeing, went body surfing and all of the fun things that they do. I could have put on a 'happy' face for them and told them how lovely their stories were. I did not. I could not mentally do that. Yes, I wished and wish still that I could go. I do not wish that I had. I regret that I was not physically able to enjoy the trip, but I do not regret forcing myself to go on the trip and be miserable, sick and ultimately have a lousy time myself and also dampen my children's trip.

This is a hard situation that you are in. I understand the idea that the one child that you have would love to be able to go and have a great time just as any child would love to do. Your child that is not well, would love to as well. However, if she is like I am, she also would love to be well in order to do that. That is not such an easy fix to make happen. Your in-laws were kind to make the offer in one way and either weren't thinking the situation through completely or just is unable to see things through the eyes of your child and yourselves. I wish for you that the offer had never been made. Now, no matter what the decision is that you make, you will always doubt and wonder if you should have or could have done the other.

I am truly sorry that this has happened. It is hurtful to have to make these decisions. I agree that your well child shouldn't 'be punished for being well', but you are all a family and maybe making this hard sacrifice and finding a local activity for your entire family will help both your child that is not well as well as your well child with the greater points of being compassionate and caring and giving up what you would love to do for someone that you dearly love. Wouldn't it be nice if all of our extended family that are so bad at showing this compassion had learned this lesson already?

I am thinking of you and your family.

Heidi

I know how hard it is when family members do not understand this illness. We have not spoken to my in laws in almost a year because they choose not to believe that our daughter is sick. Unfortunately, if I am understanding your situation correctly I have to side with your in-laws. If this trip is for the entire family, then it is not fair to keep postponing the trip . Our daughter has been sick since she was a baby but we have always tried to keep things as normal as possible for her older brother. No matter how hard we try it seems that she always got more attention because she was sick. We have vacationed in Disney World many times. When our daughter was feeling ill my husband and I took turns staying at the resort with her while the other one took our son to the parks. Not an ideal situation for sure, but it worked.

Maybe you could look into some sort of camp for your daughter with POTS. My daughter is 19 but she has been able to attend 2 wonderful camps for young adults with chronic illnesses. I do not know where you are from, but Victory Junction Gang Camp is an amazing place in North Carolina.
I hope things work out for all of you!

Thanks for all of the suggestions. I understand where some of you are coming from but I still think this is going to hurt no matter what. How are my kids going to feel when they hear everyone talking about all of the fun they had? How are they going to feel when everyone comes back with pictures and stories about the trip? I just don't think it's fair to just punish my kids because of my daughter's illness. We would have gone on a trip to Disney years ago with the entire family, but we waited because my sister-in-law didn't want to take her son who was young at the time. If we could wait for that reason, why can't we wait for my kid?

Heidi-you hit it right on the head with how we feel and my daughter feels. We asked her if she wanted to go and just sit by the pool and she said she'd rather go when she feels better so she can go with her cousins. I don't think it's too much to ask to either have us go on an alternative trip or wait for one more year. Besides, my sister-in-law was planning on going with her kids and husband anyway, so her kids get to go no matter what. My brother-in-laws kids are older and have been to Disney more times than I can count, so it's not a big treat for them.

Anyway, I guess time will tell but I certainly am hoping and praying that this will work out and that this doesn't end up destroying our relationship. My kids are very close to their grandparents and cousins and this could really hurt them.
Brenda

Kim S. - I'm going thru the same thing. No one wants to believe you.