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KRIS ATKINSON
07-03-2005, 08:57 AM
My daughter found mail to her and her brothers yesterday regarding upcoming school recreational soccer sign-ups. The association had mailed one card to each of my kids, as they have participated annually since they were very young. She tearfully ripped the card addressed to her and complained that I had not thrown it away already. Surgery is 2 weeks from tomorrow. Obviously she is expressing her fear and aggravation at not being able to participate in sports this year. Her twin is getting ready to start practices and eventually meets with Cross Country for the high school and we are going to discuss with her other brother, who is one grade behind the twins, which sport he wants to do this fall. He has some choices, possibly. I mentioned to my husband that he will possibly be the one responsible for transportation this fall, as we see how Erica recovers. I guess I am just venting to all of you. Erica doesn't like to discuss her surgery and continues to "pretend it won't happen", but is anxious to get it done before her breathing gets affected by a higher curvature, in her thoughts. I will try to keep her occupied between now and surgery. I wonder if I need to keep the plan organizing away from her ears when we discuss things like transporting the boys to their activities, as much as possible, and I assume my husband and I may have to take turns attending their sports events, as it will really tear Erica up watching them do sports when she can't for a year. Thanks for listening. Kris

nicoles mom
07-03-2005, 11:20 AM
Kris
My Nicole Was The Same Way Except It Was Dance Recital. She Was Going To Perform On June 10 11 &12 In Three Acts This Was Her Ninth Year Dancing. Her Surgery Was March 30 About A Two Weeks Before Surgery We Were Given The Slips For Money Due On Outfits Wore For The Show. She Was Very Very Upset She Knew She Would Not Be Able To Dance But Wanted Me To Buy The Outfits Just In Case She Could. She Cried When I Said No Yell And Carried On This Was Not My Child Never A Brat. I Would Talk To Her About The Surgery She Could Care Less And Did Not Talk About It. After Surgery She Was Fine And Understood We Want To Her Show And Watched. I Did Purchased Her Hip Hop Outfit So We Could Take Her Pictures Of Her This Made Her Happy.
Theresa

Joe's Mom
07-03-2005, 07:06 PM
It is so very hard to watch our kids struggle. My 16 year old son is adopted AND has a foot deformity AND has Scolioisis AND has Scherumann's Kyphosis. Each of these "life events" has been a major issue for him and he had to learn at a very early age that life is very, very unfair and no one, not even mom and dad, can make that different. My husband tells him, "your life is what it is". At first I didn't understand at all what he meant by that, but it always seemed to have a calming effect on my son. Eventually it came to me that it is his way of saying that our son's life is plagued with a lot of things that are totally unfair, but THAT is the reality of his life. And to fight it, be beaten down by it, be consumed by it, would not be productive. To accept the unfairness and move on is a better path.

I know in the past, I would try to tell him that others had it worse, etc, etc, etc. One day he just blew up and me and said "I know mom . . there are others out there who have it worse. But there are also others out there who have it much better." He was so right. So I quit trying to give him "perspective" . . his was actually much better than mine! So we have shifted to a clear acknowledgement that life is unfair, that he has been prevented from doing many things that he would have like to do but could not, and that is unfair. Out of our control and unfair. And we try to move on from there. He does what he can do and participates in what he can, but I can tell you the hurt of it hasn't lessened. Every day of his life at one time or another he deals with the fact that his parents of birth didn't want him and gave him away, that his body has failed him in many ways, and that he has parents who love him dearly, and has a lot of strengths and accomplishments. But still, life is so unfair. No way to sugar coat that.

I found that the acknowledgement of the unfairness (agreeing with him about it) was a very powerful thing. He knew it was out of our control and wasn't blaming us, but he still needed to vent it is some way. Maybe that is what your daughter is doing? Venting? But it might be calming to her to have you and her dad acknowledge that yes, you are right, it is unfair and hurtful, but not something any of you have control over so hopefully you can move on. But I can tell you another thing my son has figured out after 4 surgeries (none related to his spine yet!) is that the promise that "life WILL get better" sometimes rings hollow. In some ways it will get better, and there may be many more hurdles in future. That is true for us all, and I guess what I am saying is that our kids are learning this painful life lesson at an earlier age than any of us anticipated. He takes things a day at a time and revels in the good things that happen and is not surprised when bad things happen too.

rachael
07-03-2005, 07:21 PM
I wonder if it would interest Erica to get involved in something that she could participate in while she recovers, and then have a choice of whether to continue or go back to sports the next year. Like maybe join a club or year book, or get involved some other way, or even maybe some sort of manager for one of the teams if it wasn't too difficult. Something to kind of take her mind off of stressing over the surgery and recovery and also something to look forward to rather than focus on missing out on something.
Just a suggestion, hope it is helpful:)

KRIS ATKINSON
07-04-2005, 05:38 AM
Thank you for all your suggestions, and Joe's mom, your situation as you described is very interesting. It's hard to deal with feeling like your life is just the way it is, and not constantly either pitying yourself or being thankful you aren't worse off than you are. My daughter shared with her mission trip group at church that she felt her scoliosis made her stronger as a Christian. She is also a very compassionate person, and was so long before she got her diagnosis. Of course, she still throws tantrums when she doesn't get what she wants, but we only see that side in our immediate family! We threaten to tell her mission team about her temperamental moody side occasionally! Rachael, you mentioned joining a club or something. It occurs to me that her church youth group and mission team are clubs she is eager to attend as soon as she can walk into the church post-surgery. They are also a good support system now, as she begs to attent any church activities. She is disappointed to miss their camp trip end of July, but they do so many other activities she can get back to post-surgery, that the group should help. She told me she is interested in me buying her clothing for her post-surgery, so she can get her mind on other things, so I guess I will do that, if she can stand whatever I pick. She is eager to pack her bag, other that shopping for clothing, which surprised me yesterday. She is excited that we will buy and new cd/radio set for her and I can focus more of my attention on sharing her cd's with her, ie the Christian artists she loves to listen to. Boy, these last 2 weeks are anxious, aren't they!? Kris

KRIS ATKINSON
07-04-2005, 05:48 AM
I also wanted to share an interesting thing that happened when Erica was watching tv with her cousin last week. They were watching "House" which I have never seen (I rarely watch TV) and apparently it is a medical research drama. The doctors ended up cutting open a cat to help them figure out a cure for someone's illness. Freaked Erica out, although she didn't share this with her 24 year old cousin. The cousin was concerned about how gory the show was, but didn't pursue the concept of the cutting of the cat. Erica told me how it made her think about how she will be cut at her surgery. I was so glad she told me about this yesterday. Of course, she immediately wanted to stop discussing her surgery and went into her usual distant self. I changed the subject along with her and just kept the thought in mind. She also wanted to know why she can't swim for awhile after surgery. I told her she needed to keep the incision dry, and I think that hit her heavy. She said "oh" an got very quiet. I think she knows less than I sometimes think she knows about what will be done to her body, and unless she asks, I don't explain. I hope the doctors don't tell her so much at pre-opt that she refuses the surgery. Kris

rachael
07-04-2005, 08:44 PM
Your daughter reminds me of myself right before my surgery. I didn't want to really think about it or discuss it becuase I didn't want to be scared. If I didn't ever think about it, I never was scared or nervous. Surgery didn't really scare me as much as the thought of them cutting a huge incision did. My mom even tried to get me to watch the surgery on some show on PBS, but I ran out of the room and pretended I had something else I needed to do. I did get a little freaked out the day before surgery when we were going over everything and the surgeon talked about liability and how things could happen,etc...but other than that I think I blocked it all out of my mind.
I think you are doing the right thing by not discussing it too much unless she asks the questions. I'm sure Erica knows how much info she can handle, and is probably buffering out the things that scare her.

KRIS ATKINSON
07-05-2005, 07:09 AM
Rachael, do you think I should arrange to have the conversations with the pre-opt professionals (surgeon, etc.) talk privately to my husband and me so Erica won't have to be so frightened by all the specifics of the surgery and post-op? She knows some things, like the extremely low risk of paralysis, which made her originally decide to have the surgery. I have not described how her face will be swollen and they will turn her body constantly, which will be painful. She asked about walking around, and I told her she will tire easily, but I didn't tell her she will hurt really bad as the nurses get her moving. She is fraid of the needles at the moment, and is just frightened about them drawing blood again, etc., let alone the gore and pain of surgery and recovery. Kris

rachael
07-05-2005, 05:43 PM
Well, hopefully the doctors are used to what they should and should not say in front of the child. I have forgotten where you said she will have surgery, but I would think if it is in a children's hospital, you are probably okay.
I don't mean to make anybody nervous, so I really appologize if I do, but the thing that kind of freaked me out the most was when the doctor had my parents and I sign a release of some sort about the possibility of death...mainly with an anestesia (sp). That was never a threat in my mind, and I quickly dismissed it, but it kind of caught me off guard.
I think it will be okay not to worry about it, but keep a read on her during those conversation so you can adapt if necessary. Also, if she feels ya'll are talking without including her, she may become worried.
If she is anything like I was, I was dreading the needles and giving blood the most, and a little worried about how my life would change after recovery, but the more people ensured me it would be normal, the less I worried. I still am scared of shots and giving blood, so I don't know what to tell you there, other than that if that's one of her biggest worries, you will all get through this with flying colors!
-r

KRIS ATKINSON
07-06-2005, 09:47 AM
Thank you, Rachael. Kris

nicoles mom
07-06-2005, 10:45 AM
Kris
For My Nicole It Was A Good Thing To Hear What The Doctor Had To Say To Us Before Surgery. She Wasn't Afraid Of Giving Blood The First Time She Had Blood Taken It Didn't Hurt So She Had No Fears With That.
The Doctor Was Very Good With Her And He Talked To All Of Us. She Even Ask Some Questions To Him Herself Which Blew Me Away. Nicole Is 12 Now 13 Very Shy Kid. She Just Didn't Have A Clue What Was Going To Happen To Her. She Didn't Understand The Pain She Was Going To Have. I Would Talk To Her And She Just Wanted To Know When She Could Do This And That With Friends.
I Was So Worried About Her Going For This Surgery And How She Would Do With Recovering After Surgery.
These Kids Are So Brave And Amazing. When The Surgery Was Over She Was In The Pauc Unit I Was Holding Her Hand And Asking Her How She Was Feeling Her Reply To Me Was Like You Told Me It Hurts Alot. So Only You Know Whats Good For Your Child For My Nicole Hearing What The Doctor Had To Say Was The Best Thing I Did.
Theresa

lorrie
07-07-2005, 04:40 AM
Hi Kris
As Theresa said - only you can decide how much info is right for your child. There are just two things: if you don't tell her something and she finds out afterwards that you knew and didn't warn her, will that affect her future trust in you? I once saw a child of about eight or nine only being told immediately before going down to theatre that she was going to have surgery at all (the poor kid thought she was only in to have a plaster changed on a previous surgery) She completely freaked out and I did wonder how she would ever trust her mum's word again.
The other thought is that, if you talk to the docs without her, won't she just wonder what it is you don't want her to know and worry about that?
I probably err the other way - I need to know everything and I've always tried to make Genevieve understand as much as she can. I've always thought that informed fear was better than fear in the dark.
Hard decisions and I do wish you luck. all you can do is pray and then do what feels right for you.
Lorrie