A Prayer For My Grammie

I have been very fortunate in my life that 3 of my 4 grandparents are still living. I know that at 35 this is a true blessing that not many others my age get to share in.

My Grammie is in the hospital right now. If I understand all of the communications that have been sent out to our family she went into the hospital because of stomach pain that ended up being a massive infection in her body that began in her gall bladder. Because the infection is so bad the medical staff assigned to her care cannot operate on her body. They are working to clear up the infection so that they may operate on her gall bladder. In the mean time, while sitting in the hospital she began to have a heart attack which doctors are trying to stop with medication as they cannot open her up to clear her blocked arteries until the infection from her gall bladder is under control. She is on a ventilator and is being kept sedated right now. One moment she appears to stabilize and the next moment things get pretty hairy and uncertain.

While all of this is going on I cannot help but think that  while my grandfather is the soul of our family, my Grammie is its heart. I am not sure how a family survives without its heart.

My Grammie is a one of kind lady. She can strike up a conversation like none other, and will willingly talk just as easily to a homeless person as she would the president of the United States. She also can stare like it is nobody's business. You can feel those eyeballs of hers burning into your back if you happen to catch her eye. She gives freely and openly and would do anything for anyone. She is also the first person to tell you you are being an as#hole if that is how she feels you are behaving.

My Grammie is the Italian matriarch of our family. She can cook with the best of them. I know that when I go to my Grammie and Grandpa's house I am going feast 3 meals a day. My kids love her and my Grandpa's mickey mouse pancakes.

My Grammie prays for Sarah with the best of them. Always lighting a candle for her when she goea to church. Knowing her like I do, she probably asks every single priest to pray for Sarah and tells each one of them her story.

My Grammie is a force to be reckoned with. If God is thinking of calling her home I hope he knows what he is in for. She will chat his ear off laughing with him and sharing with him one story or another and then the next minute read him the riot act for not taking care of business the way she thinks it should be done.

I want to be at the hospital with her so badly, but I know that my aunts and dad and grandpa need their time with her right now. They don't need the distraction of me and my kids. They need to be able to have this time just the 5 of them as a family to take care of business and be together. But it kills me to not be there with her and with them. It kills me to not be able to walk up to her bedside and hold her hand and tell her that I am there with her. That I dropped everything in my life to be with her because I have always believed in family first. That she was one of the people who helped instill that mantra into my heart. It is so hard to sit here and wait, but wait I will because it is what is most needed.

I hope that she can feel my love while she sleeps in her hospital bed. I hope that she knows that "my Bobby", as she calls Bob, is thinking about her and sending his love from 2000 miles away.  I hope that she knows that he loves her, just as I do.

I hope she knows that she is the heart of our family. I sometimes worry that she feels like she lives in my grandfather's shadow because of the special love that so many in my family feel for him. I hope she knows that she has her own unique light that cannot be duplicated or out shined. That she alone is the only one who carries that special torch that we all look to.  I hope she uses the energy of that light to heal herself. Because I know that I for one am not ready to live in a world where that light does not exist.

This Day & Other Updates

Sarah with a scarf that was recently gifted to her by good family friends. 

Breakfast - all set up.

Andy - doing his math assignment for the day.

Stopping their playtime so that mom can shoot a photo. 

Veggies for dinner. 

Homemade pasta sauce using the tomatoes from our garden. 

Getting caught up on some much deserved 'thank you' notes. 

It seems to be never ending. Clean laundry waiting to be picked up and put away...

Playing a made up game using ice and the trampoline. 

I think it is fair to say that we have a lot going on in our family right now. Bob left on Sunday to begin our new life out in New Mexico. His flight from Houston to El Paso was canceled (thank you, United) and he had to sleep in the airport for the night after finding out that all of the local hotels were booked solid. He finally arrived at his destination a good 24 hours after he departed from Cleveland. If we can book a flight for the dog, I think that his next trip back to Ohio will be around Christmas. If we end up having to drive to New Mexico (because of the dog) then he will fly back to Cleveland and make the 26 hour journey with the kids, the dog, and me. I am hoping to join him no later than the second week in October. I would like my boys to finish out their soccer season.

Because of the difficulty in trying to find a good weekend for me to go out and house hunt Bob and I have decided to allow him to pick out our family house. I feel comfortable doing so based on the Internet and other technologies that we have been afforded via the relocation company that will allow me to help him choose albeit from a distance. We are hoping to have something picked out in the next couple of weeks. 

The kids and I are trying to make our lives as simple as possible now that it is just us. We make a good team together, and they all seem to be willing to help me out when I need it. I have some anxiety over whether or not I will be able to sell my current house. We have had several showings in the 10 days it has been on the market, but being on the corner of a busy street seems to be the biggest deterrent in people making an offer. I hope that someone - soon - will like the house enough to overlook the busyness of the street. 

The boys are doing well this soccer season. I am $100 poorer due to a bet I made with Andy about a year and a half ago. He was playing on the defense then, but his kick was getting stronger and stronger, so I told him that if scored a goal I would give him $100. Well, lo and behold he started playing for a new team that following season and his new coach put him at midfield and forward. Because I had not specified a time frame for the bet nor had I specified a position from which he had to score from it was only a matter of time before he scored. And so, two weeks ago from an assist by his brother, Andy scored his very first goal. It was the perfect goal. My two boys working together - one (who has scored many times) helping his brother (who was scoreless) making a dream come true (and making him a bit richer). I cried. It was pretty awesome. 

Miss Sarah is doing well. Dare I say - stable? Her vision never did come back -  that was no surprise - but her ability to handle herself and navigate her surroundings is amazing. I don't know if most people could tell upon first sight that her vision is so poor. I am not sure if her new treatment regime is helping or if the damage was done and this disease just decided to retract on its own. She just finished up her second month of IVIG. Her first treatment last month went terrible as she ended up with the side effects of a migraine headache (like none I have ever seen) and vomiting. After a day at the hospital treating her with fluids and migraine medicine she was good to go. This last treatment went much better in terms of her reaction, but because of some growing pains that the hospital is experiencing it was not a smooth treatment in terms of patient experience. We were one place one day, another place the second day, and back to the hospital for day 3 and 4 of treatment. We have gotten the situation figured out so that the last treatment she will receive in Ohio will go much more smoothly. It has been so nice to be able to settle down without life being one big emergency. We are going on 7 weeks of no relapses which is one of our longer stretches since her diagnosis, and the longest stretch she has had since January of this year. Sarah  had another MRI and also a spinal tap last week. Her MRI came back with awesome results. No lesions on her spine and there are no new lesions on her brain. Those lesions that she did have appear to be healing. The only damage that her MRI showed is on her optic nerve, but again, this is no surprise. It was really nice to get such good news. Her spinal tap went terribly though. She ended up getting poked 4 times in the back in order to retrieve the necessary spinal fluid needed which meant that Sarah was in incredible pain for almost a week. She had a spinal headache and back pain that was so terrible we were in the ER on Saturday. I have only seen her in such pain 1 other time (and that was last month when she had her IVIG migraine.) It was a terrible feeling to see her curled up in a ball sobbing because she hurt so badly. This coming from a child with the pain threshold of a Navy Seal was very hard to bare. Thank goodness she is back to normal again. Her spinal fluid came back with no oligoclonal bands - which means that this is definitely not MS (which we knew). Her fluid also lacked the presence of the NMO antibody which is present in 70% of  NMO patients. Her neurologist believes that she is just one of the 30% of people that does not carry this antibody, and is still treating her as a Devic's patient. As for me, I may start nosing around again to see if there is anything else out there that this may be besides NMO. 

One of the things that really has been on my mind is a conversation that I had last week with one of Sarah's nurses. She was talking about how busy the hospital has been and how many autoimmune diseases she is seeing. How they seem to be everywhere. I would agree. It seems like every time I turn around someone I know is being diagnosed with a different autoimmune disease. Crohns, Diabetes, MS, NMO, etc...what could be causing all of these diseases? The only things that we all have in common is the air we breathe, the food we eat, and the water we drink. There is something that is making most of us sick. My first inclination is to think that it is our food that is causing these issues, but obviously, I have no clue if that is correct. Now that life has stabilized a bit I am going to start focus again on doing some research on food. Something isn't right, and I would like to find out what it is so that I can give my kids, all of them, a fighting chance as living decent lives without disease. I have been in this place before, but instead of going all crazy and changing our diet I want to look into a few things first. I have a tendancy to dive head first into things instead of taking my timne to make the right choices based on sound logic and reasoning - I don't want to do that this time. I have  started making my days more meal centered though. That is one thing I have come back to recently. This means setting the table for breakfast, lunch, and dinner. It means really thinking about what I am preparing, and trying to make most of it myself. It means slowing down and trying to be as organized as possible to enjoy what I have made. Mostly, it means being conscious of what I am offering my children as a source of nourishment. I am far from perfect, but I am trying. For me, that alone 80% of my battle. 

So, that is that.