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!

Hello again . . .

I realize its been a little while since I've posted - sorry about that. After my trip to NY I was very overwhelmed and in a lot of pain. There was so much excitement I will have to give it to you in two posts. So, here is NY post #1:
The reason for our adventure to NY was to see my surgeons. I have been a patient at The Chiari Institute, on Long Island, for almost six years. We arrived on Wednesday, and my testing was scheduled for Thursday - all day. I spent my day in MRI, CAT scan, and X-ray machines getting my annual does of radiation. There was some blood drawn and then I was able to meet my mom and son for dinner in the city. I picked up my scans the next morning before my appointments with my docs. As soon as I looked at them I knew it was not going to be a good appointment. After all this time I've figured out what a good, clean MRI looks like and this wasn't it.
My first appointment was with a neurologist specializing in Chiari Malformation, Ehlers Danlos syndrome, and Tethered cord. We went over my scans and he told me a few things - 1. I have a pseudomeningocele, a large one. This is a spinal fluid leak with the fluid settling at the base of my skull around my cerebellum and spinal cord. 2. My lumbar spine was fractured at the connection between L-4 and L-5, spondulolysis. 3. My L-4 was moving forward trying to shift out of position, spondylolisthesis. The next appointment was with the surgeon and guess what he said? Oh, yes - surgery. We discussed my options, his various recommendations, and then he sent me back for more scans. It was Friday afternoon and he wanted them done as soon as possible, so I returned to the imaging center. I was then told to get a brace, go home and lay down.
So, this is why I have not be able to post. I couldn't sit at the computer for any period of time without increasing my pain level and I do not own a laptop. I ended up having surgery in Indy on Dec. 2, which makes me ten weeks post-op today. The tale of surgery and recovery is one for another post. . . which I promise to write in the next few days. It was an intense surgery and I am still recovering, but the worst is over. Now that my back has been corrected, its time to think about my pseudomeningocele and how it will be treated.
Through all of this my family and friends have been wonderful - bringing meals after my surgery, calling everyday to check in, helping with my son. My amazing husband has taken over all responsibilities. I am a lucky girl to have people in my life that give me love and support.