Good or bad - its your choice to make.

Everyday we make choices in life- what to wear, how to raise our children, what to eat, how to spend our money, and the list goes on. Some of these choices are little things, and some are big enough to change your life forever. Many grownups make bad choices bringing consequences that aren't usually wanted, but always seem catch you in the end. Yet there are others that make all the right choices, treat others with kindness, do their best to make a good life, and in the end life hands them a game changer.
I know all about game changers with a health history like mine. Often people will talk to me about how amazing/healthy I look, or they "can't believe how well you're doing after all those surgeries!" What they don't know is inside I'm in pain, right that very second, and I probably just want to go lay down some where. My other dirty little secret is I may be good at looking "normal" in public, but when I get home, I'll lay down for twice as long as I was out of the house. I have been in pain for every second since I was twelve years old and I'm really good at hiding it. . . I don't need my son to see me like that every second of the day, I don't need everyone feeling sorry for me every time I leave the house, I also don't want to be the downer every time I see my friends/family. My eyes tend to give me away, but you have to look closely;)
Obviously, I am not the only person in pain, or having difficulty in my world. Some people have no control over their discomfort and I am more than happy to support them in their time of need. However, being that my situation is completely out of my control and I do everything I can do to make the best with what I have- I get frustrated when people I love make choices that lead to discomfort, and then want me to support them in their mess. If you want my support, shouldn't you be willing to help yourself also? Whether it is a health or personal matter, don't act so surprised when your life is spiraling out of control and you had a hundred warning signs along the way. I mean really, did you think not taking care of yourself might magically fix all your health problems? I know several doctors that have said otherwise repeatedly. Or this little shocker - when someone decides they don't want to be married to their husband anymore, they shouldn't expect him to continue financial support.
I know, I'm being harsh, it just really irritates me. Don't get me wrong, I've made bad choices, I've done things that I'm not proud of and regret. I also took responsibility for those actions and was honest with myself about how I ended up there.
I guess what I'm saying is - life is hard enough without our help. When you make choices that lead you down a hard road, own up to it and do something to change it for the better. We all make mistakes, that's how we learn - unless you're not learning, because you think you know better;)

How sweet it is. . .

I've written a lot about my son, and about my disorders, but I haven't written much about my husband. Caleb and I have known each other for seventeen years, (I am 32yrs old and he is 31) have been a couple for over twelve years, and married for almost nine. We met in high school and were friends, but didn't start dating until a few years after we graduated.
I am so grateful for my husband. He knows me better than anyone in this world and loves me anyway;) Caleb has been loyal, supportive, honest, and loving. He is an amazing father - Logan adores him. They have an amazing connection that you only get when you have a bond like the one they share. As a family we have been through things people don't "normally" deal with in life. My first major surgery, brain surgery, was on Logan's second birthday. Since then I have had three major surgeries on my skull, spine, and spinal cord. Most young families are worried about childcare, college funds, or which car to buy. We were flying to NY to have brain surgery, trying to navigate through medical bills, and permanent nerve damage. At the same time I was so sick it was hard for me to take care of myself, let alone care for Caleb and our home. He has seen me lying in hospital beds in misery and he has been there on my very best days, but through it all he has loved me.
He takes care of me - not just financially or physically, but he is strong when I need strength, he is behind me when I need support, and he listens when I need a friend. He is funny and silly, but most of all he makes me happy. I probably don't show him enough appreciation, I hope he doesn't ever feel taken for granted. I feel lucky to have a husband that I can love with, laugh with, parent with and grow old with. . . no marriage is perfect, no marriage is amazing all the time, but to be able to trust and depend on each other has never wavered.
Once, the summer before he graduated high school, I told him "you're going to make some lucky girl a wonderful husband one day." Little did I know I would be that lucky girl:) Little did I know just how lucky I would be to have him.

My little angel

I have written a lot about feeling good about my life in spite of my disabilities and pain. Sometimes I get tired of fighting my pain, and allow myself to stop...stop physical therapy, stop meditating, stop eating healthy, stop icing, stop writing, just stop. These are all things I know will help me, but there are times I just can't make myself do it anymore. I always take care of Logan, that never stops, but mothers have a tendency to put to themselves last. In the past several months I stopped- its hard to admit, but its true.
I was recently given a reminder that life is a gift and it is my responsibility to make the most of it. Ava Jean Bryan, my little angel, gave me so much in her four months of life. Ava showed me fighting is what you do when you want to get better - even when you feel tired and scared. She reminded me in the power of prayer and love. Ava is courageous, tough, and so sassy:) You could see it in her big, beautiful eyes. She also brought her mother and I closer in ways we could have never imagined.
I wrote briefly about her story a few days ago, but I will probably mention her often as she is frequently in my thoughts. Ava's parents are two of our closest friends, we love them like family. When she was in Riley Hospital we visited her and them- especially on surgery days, or in moments of need. In the end she passed peacefully in her parent's arms, with close family/friends in the waiting room. Ava taught us all about keeping life in perspective. . .this baby girl, fighting with all her body could offer, and we all walk around acting like life is a given. I think of her everyday, and I'm sure that will never change. I feel blessed that her parents allowed me to be so close to Ava and them throughout this journey.
So, its time to embrace those lessons and do what it takes to help myself. This means physical therapy routine fives days a week, icing daily, yoga, mediation twice a day, wearing my TENS unit, eating healthy, sleeping enough and doing things to help me clear my head like writing this blog. Wow, that sounds like a lot to add to my mommy/wifely duties...I can do it. With Ava as my angel I can do anything:)

Stormy days

The rain is coming down, thunder is rolling, lightning cracking, and the house is dark even though it is almost noon. Today I was going to clean, put away laundry and try to get my house a little less cluttered. As I sit here in pain, pressure rising in my head, I wonder how I will be able to accomplish anything today. All I want is to be a good mother, good wife, and good friend, but sometimes just thinking seems impossible.
It's hard to explain what its like to feel pain at all times. . . in every moment, good or bad, I am in pain. Once I wrote a poem about my lifelong companion and how it may lay in the corner quietly or it may scream so loud I cannot pay attention to anything else. My son and my husband are who really suffer. I am the one feeling it, but they have to watch me feel it, live with it, and pick up the slack for me when I just can't. I know it sounds funny, but as a mother I would rather endure it myself than watch the ones I love suffer. It is hard for me to imagine Logan having my medical issues, so lets pray that he doesn't:)
I have prayed for years to have a second baby... to be honest, its what I want more than anything else in the world. However, this is a reality check, can I really feel good about bringing another baby into this situation? I didn't have any diagnosis when Logan was born, but now I do. So, in the spirit of being honest with myself, what is the best choice for our family? I have 25 years if damage built up which created a lot of permanent damage, with education and prevention that wouldn't have happened. I could have lived a relatively normal life had we known when I was younger.
As I sit, listen to thunder, and watch the rain run down the window I wonder how I will accomplish the many things I would like to today, tomorrow and throughout my life. Its hard to let go of dreams because you are sick. . . sometimes we have to let go of something to be able to see the path hiding behind it.

The truth be known . . .

Sometimes it can be hard to be honest with yourself - brutally, deeply, truly honest with yourself. I've known for a long time that my life will be filled with pain, nausea, and the many daily symptoms I endure. I just never really let myself think about what it would really be like to live the rest of my days in this body, until recently.
October 25, 2010 Ava Jean Bryan was born. She was jaundice, but apparently healthy otherwise. Ava's mommy and daddy were thrilled:) After Thanksgiving Ava was having problems keeping down milk and was fussier than usual. Her pediatrician thought she had Acid Reflux. Just before Christmas Ava went in for her normal checkup, but she was dehydrated. The doctor sent her to the hospital for overnight hydration and observation. As Angie held Ava in her arms after the middle of the night feeding, she coded and after being resuscitated was rushed to Riley Hospital in Indianapolis. Ava was admitted to the Pediatric ICU on December 22. At that time she was placed on a ventilator to take stress off her heart. Her heart was enlarged, she was only pumping 10% blood out instead of 50-60%, and she was having many other complicated problems with her health. After a long fight, a few surgeries, a few strokes, and a month on the heart transplant list Ava passed on March 2 surrounded by family/friends. She taught show many adults about courage, strength, love, prayer, and compassion. Ava is a beautiful angel reminding us to keep life in perspective and not be blind to your blessings. For two days we surrounded her with love, prayers, and tears as we said goodbye to our angel. It was a beautiful way to say goodbye... lullabies playing, family praying for peace, hugging/kissing on her, taking her in as long as we could. Now it is our job to carry her memory with us and never forget the gifts she gave us.
There was a lot thought about Ava's future and her quality of life. At one point, Angie asked me how I felt about my future and my own quality of life. Obviously our health issues were very different, but dealing with a life long, disabling disorder is hard on anyone emotionally. Have I ever really, absolutely accepted that this is my life?
The second trigger was this past Tuesday. I took my son to the pediatrician and she said it is time to have him screened for Chiari Malformation and Ehlers-Danlos syndrome. Again, I knew this day would come, but it still took me off guard. I just hadn't been truly, painfully honest with myself - Logan could have my disorders.
These are two truths I have been aware of, but not really wanted to face head on.
I am truly thankful for the many blessings in my life. I must also allow myself to be just as realistic about other parts of my story...finding balance and honesty within myself.
"Peace comes from within. Do not seek it without." Buddha