Wow yeah this week has been a hard one. Inger my little Tinkerbell just turned 11 yrs old not but 6 weeks ago and this week she was diagnosed having Scoliosis. What was to be a simple fieldtrip turns into much more information than any parent wants to know. We went back for the results only to hear the news that our baby girl has a 30 degree curvature in her spine from the neck down. My knees became so weak I am happy there happened to be a chair behind me to sit down or I would have fallen to the ground. I had wondered why during the class given prior to us seeing the results Dr. Spence Jahner directed some of the questions my way. Ironically one of my reasons for going in was simply it would be neat for the kids to see first hand what goes on in an office, he offered free quick exams, and I had read a lot about chiropratic care for Autistic kids so immediately thought of Benjamin and wanted to ask more questions. NEVER in a million years did I think we were going to get called for this.
She has complained of pain off and on all year. I chalked it up to she is active with rock climbing, tumbling around in gymnastics style, running, tree climbing (kid stuff) etc so chalked it up to she needs to take it easy. She has been rather clumsy lately so once again I said oh you have hit the clumsy preteen stage. Some are more clumsy than others it is ok you will grow out of it. Meanwhile I cry everytime a moose dish, coffee mug or other items get broke. Not wanting to hurt her feelings I asked her to stick to plastic items. Since finding out about the Scoliosis I felt like crap for a fleeting moment thinking of the past year. Now I know further tests are necessary to rule out possible tumor as pain isn't typical with scoliosis...just dig that knife a little deeper please.
HOW does this happen? WHY!! Of my kids why the one I have the closest bond with? I felt like my heart was ripped out seeing her xrays. But then of my kids she is my Pollyanna and makes lemonade no matter how sour the lemons may be so if news like this had to come I am grateful it is her in that respect and manner of thinking. Please don't take that as I wish it had been one of my other kids because I don't. I would have felt like this no matter which child. You see I had a very difficult delivery with Kelda, nearly died from child birth, rushed into the operating room, and she formed a tight bond with her father in the 10 hours before I got to see her. Where I had been a mother for nearly 3 years by the time Inger was born when I first laid my eyes on her and held her for the first time I had an "ah-ha" so to speak moment of this is what it feels like. Every bit of my being was so over joyed. So to see those xrays every bit of me hurt as bad as the day I felt so awesome in meeting her.
Kelda has taken this news very hard. For as independent as she is she's also very sensitive. She has always been my nurse, mother hen whatever you want to call her. If someone is ill or hurting she must take care of them. This was touching on so many levels for how much emotion she had upon finding out about Inger. I felt bad for her to feel this way but at the same time in that moment I KNEW without a doubt as much as she may say she never wanted a sister they have a very special bond. Something I personally have always known but she doesn't like to show it.
So where do we go from here....
Well not really sure. Due to the pain she has had obviously further testing is in order, possible bone density testing etc. Carl left the office as he couldn't deal with any further information at the moment so not a lot was discussed. I have been researching and we are going a very natural route first. We are hopeful that thru chiropractic care, Mines, Yoga and Japanese mushrooms, liquid calcium for neural health that we can correct this without a brace and surgery. Of course if there is a tumor there surgery won't be avoidable but we will cross that bridge if it forms. For me I am returning to work to help pay her medical bills. Talked to the boss that night about coming back as I know it had been brought up but I was hemming and hawing as I realy wanted to try some other avenues and didn't want to have to ask for time off when I had a shoot come up. Photography business where it is getting busier finally it is not steady enough to cover the costs; it is going to have to get set aside once again. Maybe I am only meant to share my gifts for those that need it in times of need, times that are hard, such as in Now I lay me down to sleep. For families that know there is a chance they are going to lose their beloved child. I don't know. I do know I have the bridal fair in January with a deposit already made so the booth is reserved and will be prepping for that and hope to get weddings booked for next summer here in Montana.
The most important person that should be mentioned in this blog is Inger ya think. Well you may be wondering how she is taking this news. Like me she has cried, but now asking questions, sleeping with us again as it comforts her. Starting to joke around again and using humor to help her get thru this time. I like this as I am better able to guage how she is truly feeling and handling this situation. She is trying to joke around to get me laughing and then makes quirky remarks and when I answer she will say something like good now don't ask me the same thing because you will get the same answer. She knows the next year is going to be hectic with seeing the chiropractor 3 times a week, yoga instead of gymnastics, no dancing for now etc, but she too doesn't want surgery. she has heard stories of people becoming paralyzed after a back surgery gone wrong so really hoping nothing comes to that as it may be rather difficult to get her in. Carl didn't want me to cry in front of her, but I couldn't stop the emotions as they were too great. No mother wants to tell her child something is wrong and we have to figure out how to fix it or things will only get worse. I feel emotions are important...we are only human and she knows this. He is the one that says we don't white wash this stuff tell the kids like it is. She has to be able to help make decisions as this is her body we are dealing with and if she doesn't have all the information she can't help make an informed decision. Yes we realize this is a lot for an 11 yr old, but she is very bright and knows when someone is lying or not telling her everything.
I will blog our journey over this time so hopefully if someone else in need comes across this maybe our experience will help them. In closing I want to say that I am scared, I have done what I do best...I cry, cry and cry some more all the while arming myself with knowledge. Knowledge is power from there it is what you do with it. I have all sorts of emotions as to will she have a quality of life, will she be able to do things she loves, how will this affect her life, our lives, I have read many positives, but also some negatives and it is the negatives that scare me. We don't know exactly yet what we are dealing with. How long has she had this, was she born with it, was it started by the same car accident 10 years ago that affected my back issues, was it the spike in fever and reaction to the chicken pox shot that was forced on me, I mean who knows what caused this for my angel baby. Does she have the type that no matter what we do she will get worse so many questions without answers that only time and tests will answer.
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1 comment:
I feel for you and your daughter. My 21-year old had surgery in 2000 at the Shriner's in Spokane. Her curvature was very serious. She had rods put in and now she's back in my home with a broken rod and unable to work. She lost her apartment too. We were told that she could do whatever she wanted. This evidently isn't true. She did hostess, cashier, and housekeeping work. I'm very upset for her and she is too. She's working on her GED and hoping to get into some kind of work and perhaps to get the rod fixed. Right now, everything is up in the air. I wish they hadn't told her that she could do whatever she wanted. Now one my 14-year old twin sons has a rare disease called Scheurmann's disease which mostly effects his T12. I started homeschooling him because regular school was really difficult on his back. I need to get his bro and sis checked out too but I've noticed that I'm trying to avoid because I'm still trying to adjust to his pain and changes. God Bless you both.
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