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!