Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Postby johacas » Wed Feb 02, 2011 8:12 pm

I know my post isn't truly about my daughter with Chiari, but I was wondering if other families/marriages have difficulty in these types of situations? I want to start by saying that my son, who is now 16, has had medical problems since he was five and for years doctors just called it a demylinating disease, but a year ago he was diagnosed with Multiple Sclerosis. We've dealt with medical issues for years, but it's always been the same - I deal and he ignores. He deals as much as he has to and then shuts down...ignores, denies. Anyway, Cassidy, 12, was diagnosed a year ago with Chiari and it has been a long year. She didn't get surgery because we decided to wait, but it's time for her to go back to the doctor and some new symptoms are appearing and I'm dreading even making the appointment. I feel like whenever it's time to deal with this, there is such a distance between the two of us and I don't know if I can do this again. I feel like I'm torn between my husband and caring for my daughter. I would do anything for my children, but I feel that he thinks we're creating issues where maybe there aren't any. Does that make sense? We have been married for 19 years and he is very involved in their lives, very caring and very loving...but this one roadblock is so huge and I don't know how to get through it. Cassidy continues to have daily headaches, ringing and water sounds in her ears, difficulty straightening her back without pain, and a blind spot that comes and goes in her one eye. I have made the orthopedic appointment and the eye appointment, but have yet to call the neurologist back yet - she was due in January :( I have gone to counseling because of the many medical issues I deal with, but he is not an advocate of this. I feel so alone in a journey that I should have my spouse with me and I'm wondering if others deal with this, and if so, how do you manage to keep your head above water because I'm not feeling like I'll be able to much longer. Thanks for listening!
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Joined: Tue Mar 02, 2010 8:14 pm

Re: Relationships

Postby memom » Thu Feb 03, 2011 10:16 am

You are not alone. I too have a husband who could not see the forest through the trees. The first year was very tough. I think he did not want to see what was happening. He thought I was making up symptoms and making her feel worse than she really was. To top it all off, he would complain to his side of the family. An example: We had just got back from a visit to the ER because MaryEmma could not swallow for 4 days in a row. His father called and my husband told him everything was fine. After he hung up the phone, I asked him why did you tell him that? He said "I did not want to talk about it." Well, a few weeks later, his father came for a visit. That evening the father in law told me that I was crazy, I was driving my husband crazy, and I was "babying" our daughter. He told me to get off the internet and stop running all over the country wasting money... He continued on and on. Needless to say, I was in tears. My husband was not in the room at the time. When he returned, I told him what happened. I told my husband that our daughter does not understand why people do not believe her and to top it all off, she can't understand why her own father does not believe her. I blew my cork (something I NEVER do)! Everything I had held inside for months and months came out that night. Thank God, my husband got the message. From that night forward he has been 100% on board with this. He has stopped saying everything is fine when family ask.

This is sooooo hard for everyone. Somedays, I feel like I want to punch the _ _ _ _ out of someone or something (my father in law comes to mind). MaryEmma and I have come up with plan to deal with people like this. Whenever someone does not believe what is happening, we laugh and say "Tennis Time". This means that the person who is not listening is going to become a tennis ball and we are going to "volley" them back and forth across the net! We also refer to them as "JA's". I do not let her cuss, but in some cases, it helps relieve the tension and we can laugh about how ignorant people can be. There are several doc's who we refer to as JA's. And, there are many who have been served up in a pretend game of tennis - the father in law is one!

Also, I wanted to let you know that when I need help on those dark days, the days no one wants to believe me or my daughter, I pick up a book and read about women who have struggled before me. I have found several stories about inspiring women who had to deal with difficult circumstances and how they overcame their problems and moved forward. Their stories spread across time - some are recent, some happened 200 years ago. They help me to see that we all have problems to overcome. Also, they help me to become inspired on the days I need someone or something to pick me up and help me keep going. I have been thinking that I need gather these stories and put them in one book for all of us who need inspiration from time to time. Hmmmmmm....

I am soooo sorry that you have to deal with this on top of everything else. I will pray that your husband gets the message soon! Keep your head high and do not ever doubt yourself or your children. You are doing the right thing by believing in them. Please email me if you need too, I understand where you are.

With lots of hugs and prayers,

Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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Joined: Fri Aug 07, 2009 5:25 pm

Re: Relationships

Postby kellbell » Fri Feb 04, 2011 9:36 am

Just like Lauri said, you are not alone. I too have a husband who thinks I make too much of everything. So, on top of all of us having to deal with the medical issues our children have, we have to constantly "fight" to be heard, to be heard by family members, doctors, teachers, school nurses, who just can't believe it or don't want to believe it.

Just remember you are not alone. I am soo grateful that we have this forum, mostly because I know that I'm NOT crazy, LOL

Lots of hugs and prayers to everyone.

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Joined: Sun Apr 12, 2009 5:36 pm

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