Purple is her color.

If you have read many of my posts you probably remember my some written about my angel, Baby Ava. She came into this world to teach us all a little something about life, but she was not meant to stay with us for long. Ava Jean Bryan would have turned one this coming Tuesday. We all miss her, love her, and would do anything for her to be with us - but that just wasn't His plan. As this milestone comes closer I have seen Ava's momma, Angie, find the strength to settle into her new life. Don't be mistaken, she will never move on, get over it, or be without that pain, but she is starting to settle into what life will be without Ava. I'm sure some of you have lost someone close to you and there are always moments when you stop to think, "I wish they were here," to feel this joy, see this beauty, or be part of a life changing moment. . . I can only imagine that she feels that everyday. Even in moments of pure joy, somewhere in her heart Angie will be thinking, "I wish Ava was here."
I was with Angie last night while she was working on a baby book for Ava. It was a beautiful, handmade scrapbook one of her crafty friends made as babyshower gift, so all she had to do was put in the pictures and captions. Angie made the comment that this was perfect for her because most traditional baby books have pages for writing things like babies first tooth, baby's first word, favorite food, and so on. I had never even thought of that. There are so many little things that people take for granted . . . how many of you have a baby book that you never even took the time to write in? I was reminded in that moment we all have something in life that is really hard, we all have something that consumes us at some point, but it is up to us to find a way to make it through. Angie is so strong and amazing, she is finding a way to live her life in the shadows of a deep loss and profound sadness. She is finding a way to move forward through all the pain, sadness, anger, and tears.
Ava helped me to remember that even on my darkest days, in my most painful moments, when I think I just can't do this anymore - there is always someone in more pain, more misery, and worse health. I wish my life were different and some days it is hard to accept that I will be in pain every second of the rest of my life, but I'm here with an amazing family and good friends. I may not be living in my dream house, drive a fancy car, or go on lavish vacations, but I don't need those things to have a full life and be happy.
Ava fought over two months to stay strong, beating the odds time after time. Angie's hope, love, and devotion never fading for a second. The two of them have a bond stronger than most mothers/babies. They made a deal in one of their many late night talks - Angie understood she had to go, she understood she was meant to change lives and she did, so now Angie would have to carry on her message. As hard as it has been, I know Ava is proud of her mommy - Angie has started an annual Baby Ava Legwarmer, toys, and clothes drive to benefit the children at Riley Hospital for Children, and has plans to start a Baby Ava Charity. I continue to feel connected to Ava, just before Mother's Day after thinking of her all day I felt a very strong need to dye Angie a purple scarf. Purple was Ava's color, and I know she wanted me her mommy to have a beautiful, purple scarf for Mother's Day.
It is so easy to get caught up in our own lives - we may not talk to the people that mean the most to us as often as we should, we may not make time for the simple moments like just spending time with a good friend or taking advantage of the little time we have with you children. Life is hard enough, take the time to celebrate the good in your life, take the time to enjoy your life! Whether you realize it or not, every life is a gift not a given. . . Ava taught me that.

The sun will come out tomorow.

I know I promised more detailed posts on our August adventures, but first I there are a few things that have been on my mind . . .

1. I'm thirty-three years old and I will be in pain everyday for the rest of my life. I will wake up in pain, move through the pain (when possible), and then go to sleep with my pain. Each morning the first thought that registers in my mind is, "ouch". I am SO tired of being in pain and having to find a way to live as normal a life as possible - I want to have fun with my family/friends, I want to work to contribute more to my family, I want to ride roller coasters and horses, I want a break from this pain, I want to be better. I don't sleep well, due to pain and nerve/brain damage I never reach REM sleep which is the deepest, most restful stage of sleep. I'm just getting tired. I know it seems like I am so positive and appreciative about my life, but even I have my moments when it all seems hopeless and impossible.

2. Monday morning Logan woke up to the sound of me puking up my undigested dinner from the night before. It was early, and I didn't think he was awake so I used his bathroom since my husband was in our shower. He was awake, he did hear me, and it makes me so sad. . . Logan is aware that most mommas do not have brain surgery, come home multiple times with several staples holding surgical wounds closed, or puke undigested food from dinner the night before. He knows when I'm hurting more than usual, he knows when I can't eat because I'm nauseated, he has seen me in the hospital connected to all the tubes and wires - all of these things make my heart hurt. This is not the life I wanted for my son. . . I think most all I want him to not have to see his momma sick anymore.

3. There is a stigma with being a chronically ill, legally disabled, pain patient. (Now, you need to know I am no longer on any of the really "good" pain meds and I no longer see doctors that are at pain clinics or specialize in pain treatment - some would not classify as a pain patient anymore. I do not like pain medications, or any medication for that matter.) Sometimes when I'm at family gatherings politics may come up and in the past comments have been made about whether or not US citizens should have to "pay for other people's lives". There have been many instances of similar conversations, but I think you get the idea. My point is that I worked as long as I physically could - when I got sick I had been to school, built a business, gotten married, built a home, and started a family. I did EVERYTHING I was supposed to and my life literally fell apart when I got really sick. I didn't do anything to cause my disorders, but I have been treated like a lower class citizen by several people because I don't have a job, or I am on medicare. When our lives fell apart and a lot of our remaining income went to medical care/treatment it was my doctors that encouraged us to apply for Social Security Disability. (By the way, we were twenty-four and twenty-five years old with a one year old baby.) I don't think we had a choice, and I don't feel bad about taking it, even though some out there probably think I should. I guess what you should get out of this is that you don't know what you would do when your life disappears and your future is forever changed. You don't know what its like until you are staring in the face - I've always felt like heart surgery, cancer, brain surgery, and anything lifelong or terminal are kind of like exclusive clubs . . . you just can't know what is really going on inside until you join one. Try to remember, this is not an equal opportunity world, and some of us got the shit end of the deal.

4. When you see me, please do not assume I am healthy or feeling good because I am pretty and wear a smile on my face. One of my doctors, the horrible one that left me without my pain patch cold turkey, once said, "you just LOOK so healthy, its hard for my staff to understand." I will never forget that statement. If nurses in a neurological office thought I was too healthy for the level of treatment I was receiving, then what were people that didn't have my chart and a medical background thinking? I look this way because my body stopped digesting food properly and I have to maintain some level of physical therapy to strengthen my muscles so my degenerating joints/discs have more support. Not to mention that gaining weight is not an option, according to my many doctors it would triggeran array pain, back, and joint issues. So, I am truly sorry if I "look healthy and happy", but I choose not to let the whole world see me vulnerable and in pain. . . even though that is who I truly am.

Well, sorry for being such a Debbie downer, but sometimes this is how I feel, sometimes it is just too hard, and I'm trying to be honest about my life. Don't worry about me, I'll get up, do my physical therapy, and put on a happy face. The alternative is to lay here, feel the pain and nausea, feel sorry for myself and stay miserable while life passes me byand I just can't let that happen! Have a good day, and thank you for reading my venting - I'll try to be a little more upbeat next post!

Where do I begin . . .

Well, where do I start? I know its been a few months since I've posted, sorry for that, but my pain level went up and my days got busy. I guess I'll start with early August and catch you up . . .

August 4 - I had an appointment with my orthopedic surgeon to look my T-8 area of my spine and the pain radiating from it. I had a full body work up last December, so we knew something was wrong with my T-8 vertebrae and at some point it would need to be addressed. Over a few months I had been having pain around my thoracic spine and that's when I knew it was time. Dr. Joseph Riina is an amazing surgeon with OrthoIndy, an amazing group of docs/therapists/facilities, and he did my 2009 lumbar fusion/discectomy to treat my spinal fracture/herniated disc. When I went to see him in August I could tell there was something wrong just by looking at the films. (You would think after all my MRIs, x-rays, and CT scans I would be good at recognizing a problem - this is only the case when there is something blatantly wrong.) Thanks to the combination of my cranio-cervical fusion and my lumbar fusion I have acquired a seventeen degree curve in my thoracic spine. But the good news didn't stop there . . . my T-8/T-9 vertebra are degenerated significantly causing pain, instability, and early onset arthritis. The bright side: I don't need surgery at this time, my nerves are not being compressed yet, and I can still treat with physical therapy, ice, TENS unit, meditation, yoga and massage. I have found most doctors like and encourage my treatment program, and since I don't like taking meds this works well for me at this time. I must admit since Logan has gone back to school my eating has not been as frequent or healthy as it should be, but that is one of many things that I need to change.

August 5 - Caleb, Logan, and I went to meet Dr. Torres-Martinez at the Riley Hospital for Children Genetics Clinic. After a very thorough physical exam, long family history review, and a brief exam of my EDS it was decided Logan was at very low risk of having my genetic disorders . . . he didn't even order an MRI! Logan is having a heart ECHO tomorrow to check on a "muffle" heard from his heart, and he is to see an opthamologist one more time - but, the big news is NO EDS, NO tethered cord, and most importantly he is NOT considered at risk for Chiari! I could have kissed this wonderful man telling me my son is healthy, and I should not be concerned. Dr. Torres-Martinez also told us that any child I have will have a 50% chance of inheriting the Elhers-Danlos Syndrome gene, which has not been identified so there is no genetic test for it at this time. This wouldn't be good, but I'm not sure it would be a serious enough reason to not have another child? Luckily, Chiari malformation is MUCH lower at around 12% chance of passing on my disorder according to my neuro-specialists in New York and the doctors at Riley Hospital for Children. My surgeons have told me before they do not feel families should refrain from having children due to Chiari, unless it would put the mother's health at risk.

I am SO thankful Logan will not have to deal with my medical disorders!!! I have thanked God everyday of Logan's life for his health, happiness, kindness, and intelligence - I'm not a religious person, but I do believe there is some sort of energy out there, bigger than all of us and I call it God, or the "the big E" as a dear friend once said. I believe things do happen for a reason and I believe something good can come out of most situations no matter how horrible it feels in the moment. Maybe, I am sick to help others learn how to see the light even on the darkest days, or so my son can be healthy and amazing. Maybe, I am here to learn patience, focus, or how to endure hardship and not forget my blessings. I'll never really know, but I do believe we all have a purpose and we are all have something to offer this crazy world.

August 6 - Caleb, Logan, and I head to Clifty Falls State Park in Madison, Indiana. We had a great time on the trails and just spending time together. I'll have to give this its own post later.

August 10 - I turned 33!! I LOVE my birthday, this year I spent my actual birthday on the lake with my dad, uncle, and Logan. That weekend we had a small party at our buddy's house, and then a boat afternoon/BBQ with all the Beems.

August 16 - Logan started 3rd grade! For the first time I made it through day one without crying, but day two there were a few tears. Between school and football I have barely seen Logan since early August! Logan is in the GT classroom, gifted and talented, which is made up of half third graders and half fourth graders. We really like his teacher, we'll call her Mrs. W for blogging purposes, and he likes his classmates - seems to be much less frustrating for him than being in a classroom where everyone is asking him questions constantly or just do things that Logan finds to be ridiculous. I found out recently that Mrs. W has had some of her own experiences with medical world that give her a unique understanding of our family and Logan's life outside the classroom. I hate to hear about anyone having medical problems, but it is very comforting to meet someone that has a true understanding of what my life is really like.

Logan also started tackle football! His team is the Jaguars, they've only won two games, but those boys have SO much fun. I'll post about our junior football adventures later, but had to mention it for my August update.

The end of August brought a family trip to Florida for my cousin Bob's beach wedding.

I'll have to write a whole other post for this because it was a BIG, fun week!

Well, this has been a very long winded post, so I'm going to say goodbye for now and I promise to post regularly again. Unfortunately, the past few months my pain level has been very high and I just haven't felt like doing or thinking anything beyond what is necessary. Now that life is settling down, and hopefully my pain level will go back to a 3 on the daily pain scale so I can continue writing. I'm not sure if any of you really enjoy reading about my life, but this helps me to get out some of my thoughts/stress so thank you for taking the time to read my blog.

As usual, I hope you are having a wonderful day. Oh, I discovered Pinterest.com recently thanks to one of my best friends . . . if you haven't seen it or want to check out my boards go to: http://pinterest.com/beem78/ .