Latest Event Updates
I posted a bit about Mattie’s health in yesterday’s post. Several folks have asked about the rest of my crew… so, here we are.
Steve – My wonderful hubby. We have been married for almost 14 years. Steve works in sales. He enjoys spending time with our crew, reading, and baseball.
Shelly – Well.. I already posted all about me. Feel free to check out my post.
Alyssa – is our resident choi kwang do girl. She is 3/4 of the way to her second degree black belt. Aly is 11 years old and going into the 6th grade this year. Whether it is reading or her piano playing Alyssa throws herself completly into the things she is passionate about. She is the mother hen of our children, always prepared with a purse full of snacks and activities for all the other kids.
Mattie – is the embodiment of joy. She can walk into a room of strangers and come out with 5 best friends. She has been playing piano for3 years and continues to amaze us. Mattie is 9 years old and going into the 4th grade. She is the daredevil in our crew, and lives to scare the heck out of her parents.
James – is all in! He is 100% whatever he is into or doing (this includes meltdowns). I have never seen a history buff at the ripe old age of 7. James is also a piano player…. We are working hard to get him to learn the notes and stop just playing by ear. He is talented and stubborn. James is 7 and going into 2nd grade. If you ask him he is in 2nd and 3rd. He skipped a year of math and wants to be sure everyone knows it.
Chloe and Maggie – a.k.a. Rat and Fat… Chloe is a 5 year old papillon. She is a great lap dog, but can also drive you crazy. Maggie is a 9 year old pom/schipperke mix. Maggie has congestive heart failure and isn’t very active anymore. She perks up with any chance of getting a snack off the table.
The Rats.. Fern, Ivy, Daisy, and Lilly – Yes, I said rats.. Not the most common pets, but we love them.
Many of you that know us have heard me talk about Mattie’s health a good bit. Those of you that are new to our world will get to hear all about it. It is actually kind of an issue for me. I probably talk about it too much. Part of me just feels the need to educate people about KFS, and a lot of you just get used for therapy. 😛
Klippel-Feil Syndrome is a rare disorder characterized by the congenital fusion of any 2 of the 7 cervical (neck) vertebrae. It is caused by a failure in the normal segmentation or division of the cervical vertebrae during the early weeks of fetal development. The most common signs of the disorder are short neck, low hairline at the back of the head, and restricted mobility of the upper spine. Associated abnormalities may include scoliosis (curvature of the spine), spina bifida (a birth defect of the spine), anomalies of the kidneys and the ribs, cleft palate, respiratory problems, and heart malformations. The disorder also may be associated with abnormalities of the head and face, skeleton, sex organs, muscles, brain and spinal cord, arms, legs, and fingers.
Mattie has had a total of 10 surgeries to date. She has had coccyx removal/reshape, tubes in her ears three times, a tendon transfer and muscles moved in her right hand, a spinal fusion from her occipital bone to cervical vertebrae 6, she also wore a halo for almost 7 months with the fusion surgery, she had implants put into the urethras to help with kidney reflux, and had a BAHA hearing implant.
She is a pretty amazing kid and puts up with a lot. I often wonder if her positive spirit comes from having to deal with so much for so long, or if she would have been like this with out kfs. She has what we call Orange and Gray days. If it is an orange day Mattie can be found wearing orange or pink from head to toe and smiling ear to ear. Orange days consist of no pain and hold lots and lots of joy. Gray days usually mean she is tired or that something hurts. Steve and I coined them gray days based on the lovely color of gray that she turns on these days. It is kind of like someone took that orange light of hers and turned it off.
Please feel free to ask me any questions you have about the syndrome. It is not something that we try to keep private. I would much rather people have the real information than to make assumptions that may or may not be true.
13 FAVORITE FOODS
1. Brownies- no nuts or anything fancy.. Just a brownie
2. Rocky Road Ice Cream with caramel sauce.
3. Cheese Fondue
5. Steak Au Poivre – from The Park Cafe in Duluth
6. Firecracker Chicken Wraps- from Longhorns
7. Strawberry and Banana smoothie- Steve makes the best!
8. Turtle Cheesecake
9. Country Fried Steak- mashed potato and green bean side please.
10. Decadent French Toast
11. Grilled Zuchini
12. Spinach Dip
13. Queso Dip and Chips
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Today we went to the pool with several of our other virtual school friends. It is always a struggle for me when it comes time to pick my swimsuit for these types of functions. I am still a hot teenager in my head. You know…the girl that turns heads and all the guys are looking at. Then there is reality. I catch a glimpse of myself in the mirror and somehow I am looking at my mother’s body with my head sitting on it. So today it happened; I traded my itsy bitsy tiny weenie bikini for a skirted tankini. Don’t get me wrong; it’s not that I want guys to check me out. I just don’t want to be that old lady…the one that when you are younger you laugh at for wearing her swim dress. Today I was that lady.
I must admit that the entire experience was extremely refreshing. I could sit in any chair in just about any position and was completely covered. I didn’t find myself worrying about being dressed modestly enough, or that my son would rip my top off (again) in front of a crowd of strangers. I walked around without grabbing my towel to cover up and felt truly comfortable. For a moment I forgot that I was the old lady in the swim dress and felt pretty good about myself. I still don’t think I am ready to hang up the bikini for good. (The hubby likes the tan lines) Today has taught me that options are good, and that the old lady in the swim dress probably has a whole lot more fun than the girl covering up in her kini.
Who am I?
I am… Well, I am a lot of things…
I am a Christian, wife, mother, daughter, sister, Avon lady, cook, maid, etc…. You get the idea. I am mom struggling to figure out who I am besides the usual titles that we throw at one another.
I married the love of my life, Steve, almost 14 years ago. We have 3 children, Alyssa 11, Mattie 9, and James 7. I find myself stepping into a lot of roles that I never dreamt of. Some roles I love, and others have just been necessary to jump into. All in all I cannot imagine being anywhere else or anyone else. (Well, maybe I do imagine lottery winnings and maids.. that kind of thing)
I have a great life. I enjoy being home with my children most days. I love my husband dearly. I am learning to be comfortable in my own skin and have gotten much better at playing nice with others. Age seem to have it’s benefits. The kids have gotten old enough that I can begin to look back at myself and figure out who the heck that lady looking back at me in the mirror is. She has a few more wrinkles than what I remember, but it’s her…. She still loves to write. Enjoys a good book. She still loves to camp and just be still in nature.
I started the blog in hopes of discovering a little bit more about myself. Digging a little deeper into who I am and how I view the world.