Sunday, October 18, 2009

We Are Thriving!

I am doing great and actually thriving! I love India and am happy here. Everything with Monica is going well. She is getting stronger physically each day with her walking. She has gone from full calipers (up to her waist) to just knee braces right now. It is amazing to see her improvements every day even without any sensations. On Monday she couldn't hold herself up in the new braces - they customized one for her feet and ankles and one for her knees. On Tuesday she could just stand using the parallel bars. On Wednesday she began walking using the bars. On Thursday she put on her shoes for the first time in seven months (without the feet and ankle braces) and practiced with the bars. On Friday she walked off the parallel bars (only in knee braces) around the physio room without any additional support (such as a walker or crutches) and I convinced her physio to let her take the elevator upstairs to the reception area to look outside. I believe she may even walk off the plane by the time we are done here. It is amazing how fast she can make gains sometimes. On Monday I never, ever dreamed she would be able to stand up in the new braces. On Friday she was ready to walk out the door!

The thing I love most is the miracles they have everyday in physio. It truly is a miracle that occurs when a paraplegic walks across the room in their calipers with a walker, or someone with ALS kicks the ball a little stronger, or a quadraplegic takes his first steps in calipers in over nine years, or a quadraplegic be able to move his thumb for the first time. I think that is why I am doing great. It is a positive inspirational place to be and you feel everyone from the patients, to the doctors, to the physio people, to the nurses, to the people that work at the front desk are behind the patient wanting them to succeed. I so wish that everyone could see what I see everyday. I do the "happy" dance all the time to celebrate each accomplishment with my new friends.

Monica's doctors - Dr. Shroff, Dr. Ashish, and Dr. Sudeep - all believe that Monica has something bigger than just the Lyme. They, nor in their research, have not been able to find anyone like her. Dr. Ashish agreed that no doctor in the world probably has seen a patient like Monica before. He said she is exactly like a paralyzed person. Monica's eyesight is still blurry and her swallowing is constricted, but like the fighter she is she has adapted and soldiers on. The doctors are truly amazed by her coping skills and adaptability along with her very positive attitude. I am so happy being here because I finally found my doctor "House" I've been looking for all this time. I have two brilliant minds trying to figure it out. Dr. Ashish even said that he and Dr. Shroff are debating about what Monica has and discussing ways to fix it. Dr. Sudeep we have the closest relationship with because he is here twelve hours per day, six days per week. He has a very good rapore with Monica - he really listens to everything she has to say, knows how to make her laugh, and can explain everything happening to her in metaphors which helps both of us understand. The three doctors have a very close relationship working together and it is exciting to see such team work - after all this time, I finally found our doctor "House" in three very dedicated doctors brainstorming and working towards a solution for my girl!

I am volunteering about 40 hours per week and loving it. I am writing a Welcome Packet for the hospital to give to each patient when they arrive. I love doing this type of work and am good at the details. I started and thought it would be a small packet and now I am up to about 30 pages. There are so many questions when you get here and so much information passed to each other is incorrect. I thought having it all down in a packet would eliminate a lot of griping. The griping is because no patient really knows what is going on. I believe the hospital is going through growing pains. They have policies and procedures but none are written down for us. I took a cold shower for ten days because I could never figure out how to get my solar powered shower hot. You turn the handle to the middle - wait a long time for it to warm up - then turn the handle to the left. Basic stuff but you have to know it. I am getting complete freedom to create things - forms, etc. to help out. I am even trying to figure out being a tourist and how to recommend places for people to see in the packet. It touches on all areas and I am beginning to understand how the hospital works and it's limitations due to culture and customs.

Working has been very good because it gives me time away from Monica (I work in the common room on the hospital's computer) and this has helped her develop independence. The nurses are supportive of me leaving her alone in her room or going out for a walk or being with another caregiver. Monica has a buzzer she can push if she needs something or if there is an emergency. I have been too afraid for the past two years to leave her alone. I will always let her play with a friend (I can do a chore then) or be with her dad or the boys, but I have had very few moments where I am "off" and not thinking about her. Being here has been such a gift to me because I am able to find a better balance and show her that I am a well-rounded, complex, social person. I believe my family has forgotten who I really am, but here I feel that the "net" is there to catch either one of us if we fall.

It took sometime but we now have a group of people playing nightly games of Rummikub in the common room with Monica. I keep going out to buy new games to see if I can keep them all interested and we bring snacks too. We have quads and paras playing. Rummikub continues to be everyone's favorite. We even got Dr. Sudeep to play one evening and he had a great time. He was so impressed with Monica's ability to process the math and logically develop strategic plays. Her brain has always been very good at math. Therefore, it is hard to comprehend that she cannot remember a paragraph she just read. Rummikub has been a great game to create a sense of community and everyone has become such good friends through laughter.

This is exactly where we should be; I feel it and want it so badly for Monica. It is going to happen!

On a Different Note

Yesterday a friend messaged me on Facebook one of the most amazing messages I have ever read. She and I don't know each other very well, and have only talked a couple times through mutual friends. My friend has known since she met me that I am sick, but she never knew to what extent I am sick until reading my blog. When I checked my Facebook this afternoon I was surprised she had left me a message. I would love to share the message with everyone (with her permission of course) and tell you why it meant so much to me. This what she messaged me saying:

hi monica,
i know we never have been that close and i've only talked to you a few times back at blach, but today i read your blog on your trip to india, and it seriously moved me to tears. i knew that you were sick, but i never new the extent of what you were going through. reading about the symptoms you are going through and all the procedures you are having makes me so thankful for my health, but at the same time i wish i could do something to make you healthy. i just want you to know that i hope you are doing well, and my prayers are with you.

After reading this I was at a loss for words. To tell you the truth it almost made me cry. People have always told me that my story affects others, but others had never told me it affected them so I never really believed them. She finally told me. I hope that when you get a little glimpse of everything I go through on a daily basis, you realize your how precious your health really is. Your health is the one thing of everything around you to not take for granted, for everything can change in a second. I used to take it for granted, I admit that. I used to think I was invincible like I could never get sick. You have to remember that everything can slip away in a moment, so appreciate what you have because there are people out there who don't have the things you have. I want to thank you all for following my blog and reading about what I go through. I know you will never fully understand what I am going through and how hard it is, but you know it is there. It's hard to share with everyone what I have to deal with because I don't want to be classified as the girl who is sick. Thank you for giving me the time to do it, and actually listen (or read).

Some people comment on my positive attitude about it all. The truth is I'm scared out of my mind of the unknown thing that has attacked and taken over my body. Even though it's scary, it's the cards I was dealt and I decided I'm not going to dwell and complain about it. I'm going to live as best I can and whatever I can't do I know I have people behind me who will make it possible for me to do it. I will never get better if I constantly am telling myself I am stuck with this the rest of my life. Even if I am stuck with this the rest of my life, I'm still going to be out there making the best of it. You only get to live once :)

By the way we hit our month mark, we have officially been here a month and if we don't change our date should be home in a month too!