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

Reasons to be thankful.

Logan is home for summer break and I am a very happy momma. The sun is shining, the lake is warm, and we are able to enjoy the boat with my Dad. These are simple things, but they make me happy.
My son finished first grade with a reading level of greater than seventh grade, overall functioning he is functioning at late fourth grade - early 5th grade level, all A's - some 100% . . . I cannot tell you how proud this makes me! I am unable to accomplish a lot of what I hoped for in life, but seeing him flourish makes me feel like I am doing something useful.
All our family lives within an hour of our home. We are able to see grandparents, parents, cousins, uncles, aunts - everyone. I feel blessed to be so close to those I love and can depend on. My brain surgery was on Logan's second birthday. I was not allowed to be alone with him for at least three months after surgery. So, I got a calendar and made a schedule - for three months, Monday - Friday, 8:00am - 5:30pm. I was lucky to have so many family and friends living close enough to help us for that amount of time. Beyond any help they have given us, Logan has been surrounded by people that love and support him. He is secure, kind, and intelligent - I truly believe having so much family around him has helped develop that confidence.
There are many more reasons for my to be thankful. May pain level has been higher than normal, and my nausea has increased - but, I am still a lucky girl in so many ways. I pray that I will be blessed with one more baby, hopefully a little girl. I pray that tomorrow will come and all the pain will be gone. For today I am happy with my amazing son, loving husband, and all the people that show up when I am need. Its not easy to love a person like me. . . always sick, always in pain, surgery every 18 months for six years. Some diseases/disorders go into remission, go away entirely, or are terminal. Mine is not one of those. I have permanent nerve damage from the many years of constant pain signals, the nerve endings are literally frayed and raw. I will most likely always have some level of pain in my head and neck. There is not much hope for my stomach either. So, I can see how it would be hard to be my friend or love me forever. Which is why I am thankful for those who choose to be my friend and for family that chooses to show up when I am down.
Waking up every day in pain makes me stop to think "why should I force myself out of bed today?" Sometimes it is hard to remember, but it always comes back to me when I see Logan's smiling face or Caleb wraps his around me. If I'm going to live my life in pain at least I can be surrounded by love.

Not so good.

Over the past year I have slowly been having increased pain, nausea, vomiting, and some other annoying, daily symptoms. There is a pseudomeningicele, pocket of spinal fluid, built up between the back of my brain and my skull. This pocket is due to having multiple surgeries on the area, and the area not healing in exactly the same shape as before the surgeries. Unfortunately, my surgeon in NY is not being exactly helpful at this time, and local doc wants to leave it alone, but "treat the symptoms". This means injections, meds, daily PT, possibly a spinal cord stimulator and many more fun possibilities!
Frankly, I'm tired of being sick and tired. I am tired of injections, needles, and tests. I just want to take care of my son, my husband and our home - thats all, not too much to ask is it? At this point, it might be. I am back to limited functioning - daily life tasks are getting harder and harder for me to complete. It is hard for me to want to eat because I don't know what I will actually digest or what will be left for me to puke in the morning. This happens from time to time, my symptoms increase and life sucks for a little while. I will either adjust or it will get better. For now - I have a new doctor I am going to see about injections, and any other ideas he may have. My NY surgeons are currently under investigation (which I will comment on more later) and I'm not sure what that means for me. I am thinking about finding a another Chairi specialist for a second opinion. There is a lot for me to think about right now, and being in pain takes up so much of my energy these days.
Through all this I am constantly aware that this could all be worse... I am able to stand on my own two feet everyday, I am able to be part of my son"s life everyday, I am loved by my husband, my family, and my friends. When I remember all the good things around me it is much easier to make it through the day with a smile.

I forgot the #@!%^ hat.

I know no one is perfect. I understand we all have our moments. The moment I remembered that I forgot his hat I felt like my heart sink. "Hat Day" in first grade is a big deal - a VERY big deal, and I forgot his hat. I know, Logan had some responsibility in this, but on this morning our house was not a "normal" house. . .
Logan woke at 7am, and I was already in the bathroom - puking up last nights dinner. When I was done, I told him good morning, laid next to him as he watched AFV, and waited for the next wave of nausea to hit. (Unfortunately this is happening more often again.) Sure enough when I got up to get his clothes and let the dog out, I had to make a pit stop for another round.
This cycle continued through breakfast, lunch packing, and so on. Thankfully Caleb took Logan to school, and went back to bed - exhausted, nauseous, and in pain. Very little helps when I am at this point, and I do everything in my power to get back up and move on with my day.
So, how is a seven year old supposed to remember his hat when his momma is running to bathroom every fifteen minutes to puke? Logan is very smart - too smart, and he knows exactly what is happening, he knows I am sick. . . sick in a way that has effected his whole life. He doesn't know any different, so it is all normal to him. Which is why my heart sank so far when I realized, I forgot his #!@% hat. That's all he needed from me that morning, and I couldn't give it to him. I was scheduled to volunteer for Book Fair with the PTO at Noon, so I took his hat to him when I went to the school.
I get that it is no big deal - just "hat day". When something so little means so much, and I can't even get it done because I was sick that morning. . . its a big deal to me. This happened a week ago, and I just couldn't get it out of my head. My son makes straight A's, leads his grade in all academic subjects, is an amazing artist, is compassionate and kind. I just want to give him the support he deserves and it breaks my heart when I let him down. I guess I will have to let go of being the perfect momma - I am sick, and that is just part of our life right now. Some things are much harder to accept than others, and knowing my illness effects my ability to be a mother is the hardest thing yet.

Moments in time.

One afternoon when Logan was very young, maybe 5 weeks old, my husband came home to find me a sobbing mess! I was sitting on the couch with my beautiful baby in my arms nursing (a routine I did every two hours for at least 3 months) and balling my eyes out. Caleb asked what was wrong, and my answer seemed a little strange to him. "Someday our son is going to grow up and move out. He'll leave us, and get married. What if he never comes home to see me!?" I wasn't just sobbing - I was positive he would grow up, move away, and never visit or call.
I realize the point of childhood is to grow up and have your own life. However, there is nothing I enjoy more in life than being Logan's momma. I know I will find another focus or purpose, but nothing will ever be as good as this. Knowing my job is limited to the years he lives at home, I try to enjoy every day we spend together. These are moments I can never get back and they go by so fast. It seems like yesterday we were bringing him home from the hospital. . . unsure of what exactly we were supposed to do now that we were at home, alone with our infant son.
Logan will turn 8 in November. I am proud of the person he is becoming - smart, kind, compassionate, outgoing. He is so intelligent it worries me that I am not doing enough to help him reach his full potential. Before I know it he won't be here for me to sneak in his room at night to see his gorgeous face, watch movies with on a rainy day, or snuggle up and read together.
In the end all I can do is know I am doing my best for him. I will continue to enjoy every minute we have together, and try to show him all the love I can. Some days I just wish those minutes would slow down a little bit.
Give the kids in your life a big hug, go read a book with them - just love them as much as you can!