Sunday, September 30, 2012

Power of Prayer

I wanted this to be it's own post, so I am writing it today, because I feel in the days & weeks to come I will be posting a lot more frequently. I don't ever talk a lot about religion, I don't know why, I just don't. But today's post is about prayer... and my thoughts on it.
Last night Kaylie & I went to Saturday evening Mass. For those that don't know what "mass" is... I am Catholic, and that is the term used for church service. When we typically go to Mass, we usually go on Sunday mornings, but I went to the Sat. evening one, because there was a lady I wanted to meet. Her name is Barbara... and I know she is reading this now. She has always kept up with Kaylie's blog, sent cards... and I know she prays a lot for Kaylie, and our family. I didn't know much about her, until after I announced that I was leading an ASAP Chapter for Oklahoma... she immediately sent me a letter. She has a condition called Scleroderma, and she is the Vice President of their Chapter for Oklahoma. She told me about the same struggles that Chiari has, and how their biggest goal was educating the doctors as well. She also told me about a program that OU Medical puts on yearly called Continuing Professional Development, and how they bring in well known doctors or speakers of a condition... for other local doctors to come to a 4 day seminar to learn more about different medical conditions. Barbara gave me all the info to contact the right person to get involved with all this.
Anyways... Barbara gave me her number, and I decided to call her... for one, I want to Thank her again for all her support, and tell her how much it means to us. We talked for awhile, and she told me she went to the Sat evening Mass. Kaylie & I went... Ben had a really bad headache. So, we went, we met Barbara... such a lovely lady. She told me at the end of Mass, on every end of the month that Father did the Sacrament of the Anointing of the Sick. Basically, personal blessings. Barbara asked if Kaylie & I could join her.... and of course we did. Here is where my post comes in about Prayer.

I know thousands of people have said prayers for Kaylie, and our family. But, there is something different when a Pastor does it.... at least I think so. Father went around with oil, and blessed all that was there, mostly elderly, Kaylie was the only child. And of course I broke down. You know, I did this the last couple times she was blessed. When we were at St. Patrick's in NY, and then in the hospital, a Rabi came by her room (North Shore is a Jewish Hospital). But this time, I really thought to myself I wouldn't break down... I have been dealing with all this for the past 7 months. I had thought I was past that point of getting teary eyed all the time. The kicker of it all... I really don't know what set me off. Was it the fact that here is this child amongst all these older people.... or have I not come to terms with it all? I know she will deal with this the rest of her life... right now.. things are really good, but I can't help think what goes on when she gets older. As we walked to the car yesterday evening, Kaylie asked if I was crying "happy" tears (because that is what I tell her all the time)... and I told her yes, I was happy that she was blessed, to help her, and that I was happy she was doing well. Little does she know I was crying because I hope everything I am doing ... is the right thing, in setting up the road ahead of her for her future. I hope one day when she is older she continues this blog, is the leader of the chiari support group, or takes herself to be blessed.... because she is so strong.... because of prayer.

I believe in prayer... more so now, than I ever have. I believe prayer got her through her surgery, and prayer is what will get her through the rest of her life.

Monday, September 24, 2012

BIG News...

It's official!!! Oklahoma has an American Syringomyelia & Chiari Alliance Project Chapter!!!! What's this mean??? Well, to the Chiari Community, it means a lot of different things... but most important, it means the next time an Oklahoman is diagnosed with Chiari and/or Syringomyelia, they go to Google it, and come across, and go under support.... their state, the state of Oklahoma will have an official support group... and they will know they are not alone!!! I know it doesn't sound like much... But it's a lot! It took me forever to find other Oklahomans... and now I feel like there are so many!
There was a lot of thinking and deciding going into this... I guess I should add... I am the Chapter's leader. So each month I will host a support group meeting. Also as a leader I will help spread awareness to our medical community, and put ASAP events on to raise funds for research. Yes, its a lot... No, I have not forgotten about school... I will still be working on becoming a RN! To help understand why I did this, below is the letter I sent as a message to other chiarians in Oklahoma. I had let them all know what my plans were about a week ago.

Please Click on photo to go to their website!


I first want to say, Thank You to everyone in this group. We all come from different walks of life, yet we can come together to support each other at our worst days. I sometimes rather talk to you all about what is going on with Kaylie, than my own friends or family… because you all get it. I have talked about how I feel about neurosurgeons/doctors… and that I feel… you have to find whats best for your family. Some of you also travel, and some stay in state, and I support everyone, no matter who you use. All though I have not had good treatments or appointments here at home… others of you have had the best here, but there is always room for improvement… with every doctor, nurse, or hospital. When I had so many problems I reached out to the three Big organizations… Conquer Chiari were the ones that told me about Stephanie, who she brought me to this group; they have also supported Kaylie, and her story by putting her as a Faces of Chiari child on their site. Chiari & Syringomyelia Foundation (CSF), all though I haven’t had personal contact with them, except for some of their doctors on their medical advisory board… they have such a great website full of information, and videos. American Syringomyelia & Chiari Alliance Project (ASAP) was the first organization I found when Kaylie was first dxed. Their members reached out to me, at my worst times.
When I was first added to the Oklahoma FB pages, Stephanie had talked to the OKC area about how we should start a support group. I know she knows this was something I was looking for, needed, and wanted to help start. Just at the time, it wasn’t good timing for me. I needed to focus on my daughter, and prepare my family for her surgery. Because the surgery was not a cure, and we now have to deal with my son, Mason… I want to make time for that support group. I love the fact about raising awareness, and fund raising for research…. But there were times I really needed doctors to listen to us, and that’s something hard to have when a support group doesn’t have a big organization backing them.
I have decided to start an ASAP Oklahoma Chapter. We will be nationally recognized. And the next time there is someone newly dxed, and they look at the big 3 organizations…. They will come across ASAP, and find that there are others in OK, and know there will be immediate support for them. I chose ASAP… for many reasons. First they are a strong organization, very well established, and have a very big medical advisory board that backs them. They also support; support groups. Meaning they help the group get info out to the medical community you live in, which is needed here. CSF does this too… in fact their medical advisory board pretty much consist of the same doctors… just maybe a couple different ones. But I know for a fact that all those doctors support both ASAP & CSF. My own neurosurgeon sits on CSF’s board, but also does ASAP’s conference every year. I think CC is great… but they don’t support support groups, and I don’t see them backed by a lot of big doctors. You can’t start a chapter with CC.
With starting a Chapter with ASAP, I had to sign Non-disclosure and Statement of Understanding forms. I first want to say Both ASAP & CSF makes you do this, and what that means is that; I as a leader of a chapter for ASAP, I can not fund raise for another Chiari non-profit/organization. I thought about this for a long time, talked to the group at the OKC meeting and many friends about this, had a lawyer look over the forms, and spoke to other friends that are involved in other big non-profits about it. But my deciding decision was when I saw Kaylie’s pedi the other day for a check up. We both had news to tell each other… She told me that she had just dxed another child with chiari, and since she couldn’t break Hippa laws, asked if she could give my information to the family. Of course I said yes! Then I talked to her about the chapter. She told me I would have more support, and willingness to learn more about Chiari from other doctors here, if I was backed by an organization that was backed by well-known doctors.

With this all said, I had already made plans to walk in Conquer Chiari walk, I have my family and friends joining me, because they know how important it is to me. I talked to ASAP’s board about it, and they understand I had already made commitments to CC to do that, and to the other Oklahoma Chiarians. So, I dated the papers Sept. 23rd, and ASAP will announce our Oklahoma Chapter after the walk.

When I signed those papers, it was only signing me as a leader, not those who decide they want to come to group meetings, or participate in ASAP events that I will put on. Just I can’t attend other Chiari non-profit events. But I fully support everyone else doing so. I wish the 3 groups could come together… but like all major illnesses; there will always be more than one non-profit for a condition. I hope my fellow Oklahomans support my decision.


Again, I hope this brings a lot more awareness to Oklahoma, and that many good things come from it!!!  Our first ASAP support group meeting will be Oct. 20th at 11am at the Southwest Oklahoma City Public Library at 2201 SW 134th, Okc, Ok. The email for this Chapter is:

Saturday, September 22, 2012

Walking for Awareness

Today was simply amazing. The day started at arriving at the park at 6am... I had volunteered to help. As it got closer to time, and all the teams started arriving, it was amazing to see all the family, friends, and support our Oklahoma Chiarians have. It all became very emotional, very quickly... as they took a photo of just the Chiarians.
Everyone had beads on, but certain colors. If you had red, you were a family member of a chiarian, gold was friend, orange for volunteer, purple was that you had chiari, blue was syringomyelia, and other colors that stood for related conditions....

We all had teams we were walking for, and took team photos
From left to right:
Liz, Daniel, Dad, Mom, Abby, Kaylie, Mason, Ben
Me, Sabrina, & Matt
There was a 5K run, the runners ran first, then the walkers went. We walked 3.3miles. Kaylie did great all day... we had brought a wagon for her... but she walked & ran most of it.... or should I say most of the day! The day defiantly caught up with her by the end of the day.... we were all exhausted! Before we walked, myself & two others spoke about our stories. I had wrote out this speech... because I suck at public speaking, had it on my phone, ready to go. Got up there.... broke down. Didn't read anything I wrote. Oh Well, there is always next time! lol But, I did want to share what I had wrote:

Hi, my name is Amber Barnes. My 6yr old daughter was diagnosed with Chiari 1 Malformation this past March. Like most chiari patients, she suffered from a slew of symptoms, but her big 3 were daily headaches, ear and eye pain. After much research, and finding the right neurosurgeon for our family, she went through Posterior Fossa Decompression, Duraplasty, and a C1 Laminectomy. A world of emotions changed our lives forever, the day we found out about Kaylie. But that same day, I told myself I would not let Chiari conquer us, we would conquer chiari!
We will Conquer Chiari. As we stand here today as passionate patients, parents, siblings, grandparents and other family & friends, we will push the awareness that is needed. We will raise money for research and we will better educate our medical community. I thank god everyday that I found this great group of people in Oklahoma, every one of you means the world to me. Thanks for your support.

In all it was great, I met a lot of new friends, and friends from my FB groups. There was over 300 participants, and they raised over 10K. Amazing. Jenna, Stephanie, and Karen did a great job coordinating the event. Way to go ladies! I want to thank my family for coming out, it means the world to me!!! Much love to you all!

Friday, September 21, 2012

Conquer Chiari Walk... Here We Come!

We are headed to Tulsa!!! Tomorrow our family will join over 230 pre-registered walkers and runners in spreading awareness about Chiari!!! I am so excited to meet some of the friends from my online support groups, and see again the ones that came out to support Kaylie at her fundraisers. It will be a very emotional and exciting day tomorrow!!!
In the pic is Mason, Sabrina (my friend from Chicago), Kaylie & Mason!

Thursday, September 20, 2012

2 Month Milestone...

I can't believe I look at a little girl each day, that went through such a hard and incredible brain surgery. It simply amazes me how one's hands could do miraculous things. Everyday I think about that moment Dr. Rekate walked out into the waiting room, to tell us he was done. It sends chills over my body remembering the "Congrats" from others, the hugs, the tears and the looks that Ben & I shared, as we "Thanked" God it was over.

I am posting this early, because our weekend is so crazy! Tomorrow Kaylie will be Two Months Post-Op, and if you didn't know her, by looking at her, you would have never known what all she has been through. She is doing AMAZING!!! This week she went back to school full days. She is not in PE, but  we aloud her to play at recess. That first day... I was on edge, thinking of all the possibilities that could go wrong, but she did great. She did come home Monday saying her head was hurting after recess... but i really think its all the healing that is still going on. I told her to take it easy.. not to be running around, but seriously... How do you tell a 6 year old not to run around. I think she will learn her limits soon.

This weekend we are attending the Conquer Chiari Walk Across America... I am so excited... just to be around all the other chiarians... to know we are all there as parents, spouses, and other friends & family members supporting one another. It's not too late to come out, Please join us, if your in the area!

Tuesday, September 11, 2012

Can't Get Any Better...

Sorry I haven't posted recently, we had kind of a busy weekend, and beginning of this week. A few milestones were hit during this time! First, Kaylie hit her 6 Weeks Post Op!!!! YEAH!!!! She is doing so well, and her incision looks great too!
This is something I had put on my personal FB page for Chiari Awareness Month.
This is her incision at 6 weeks post-op
Also, Friday.. Kaylie & I had gone to her school and did a meet and greet with her class. It gave them a chance to learn a little bit about Kaylie, why she had been out of school, what her incision looks like... and to ask any questions they might have. I did this, for the simple fact, that I didn't want Kaylie going back to school, and her class grilling her on why she was gone, or .. one day she may wear her hair in a ponytail, and kids start asking what was on her neck. I don't want her to feel overwhelmed... so we went in, and met the class. They were all so cute, and kind.... it really is a good group of kids! When we got done talking about Kay, we gave them each one of her bracelets, and then let them ask questions.... there was more talk about loosing teeth, than her chiari.... Oh, and why was purple the color for chiari. And all though they don't understand it all... that was the point! For them to see it, hear about it, then forget about it! And now, they will never care what that little line is on her neck!

Monday, was her first day of 1st Grade!!! I was so nervous, she was a little upset the night before... but when i picked her up... she said she had a "Great Day"!!! I was so happy!
On another note... last Wed. I held OKC's first Chiari Support Group meeting. It was great! We had 7 of us there... including Kaylie. I think as we continue to have them, the group will grow. I also have some BIG news to announce after the Conquer Chiari Walk, on Sept. 22nd.

Tuesday, September 4, 2012

Help Find a Cure...

Please help us spread awareness about Chiari 1 Malformation, and related conditions! 
Our family will be participating in the Conquer Chiari Walk Across America on Sept. 22nd, in Tulsa, Ok. You can click here, to join the walk or 5K run. Our team is Hanging With Kaylie. Or if you would just like to sponsor a walker or runner you can there, or sponsor Kaylie hereon her team page. By sponsoring a walker/runner you are helping fund research for Chiari, and hopefully a cure will be found one day. Thank You for all your support!

Saturday, September 1, 2012

September is Chiari Awareness Month
So this month, say an extra prayer for a chiarians around the world. If you have one of Kaylie's bracelets, wear this month in honor of her, or just wear a little purple to show your support.