Why I do this blog?

Why do I take the time to write this blog? This question was bought to my attention today while I talked with a family member. Why? What's it for? Why do I sit here tapping away around 20 times every month sometimes in tears. Why?

Emily's illness is hard for me to talk about. In the beginning I had many people who would call me several times a day for an update. With each phone call came emotional distress and I became unable to cope with things everyday because the calls drained me. How's Emily? Tell me, how are things going? Oh my god, what happened? My friends, colleagues, family, teachers, people in Starbucks, all well meaning. The words "what can I do" followed in some cases "how can I help". So kind but so very draining. Each call made this nightmare real to me. Sure you can live in denial all you like but sooner or later the sh*t hits the fan and BANG there it is, my child is changed forever.

So I started this blog. People had a right to know what was happening to us as a family, to Emily. I felt bad because I just stopped taking calls because to get Emily through this I have to be strong. I carry a huge burden each day, HUGE, unimaginable to most people I'm sure but there it is. In order to get Emily where she is today I have to be a master of distraction. Counselor and nurse. I have to greet each day new and fresh and encourage Emily to do the same. Over time this have become easier and my hard work has been rewarded over and over again. I just have to stand back and watch Tom and see how great he's doing in school and how happy he is now. Looking at Emily I see a strong and wonderful pre-teen who's funny and compassionate. I see bright colors in my home and dashes of art here and there which I have created either with my children or alone. I see thousands of dollars worth of medical debt which I juggle each day and funnily enough make work. I'm doing what needs to be done.

This blog helps me to decompress. It helps organize my thoughts. It is my counselor and my therapy. It clears my mind enough for me to greet each day and it informs friends and family how our life is and why if I don't return a call it's not personal it's just my life.

Amazingly from time to time I run into people that really don't get it. They can't grasp that talking on the phone and answering questions about what happened to my child drains the life from me and makes me very upset and for the most part those people have fallen by the wayside over this year. Today my only focus is to lift my family from this horror and keep going, other peoples feelings are hard to take on board at this point especially when this blog exists to keep them informed.

In the beginning a rift was formed between me and my family in England. They just don't get it despite actually visiting here in the beginning when Emily was seriously ill. What's not to get? Either roll up your sleeves and do something or back off. Come here and help with Tom, help my husband and reduce the stress, run my home while I'm in hospital with my chronically ill child, pay a bill, something, anything. Now is not the time for me to beg for help from anyone and I will not, ever. I have no time to focus on anything else other than all I have going on here and I make no apology for that because anyone in this situation would do the same. Today I found out that even though this blog has been sent to my family, they don't follow it. It blew my mind.

RSD has been like a giant sieve. It sifted people who are truly real and wonderful out from people who are just along for the ride. The people who care enough to read my posts and comment with words of wisdom, My angel Steve, those who have donated to Emily's fund no matter how much, the fundraisers like Cheryl and the British emporium, my "I'll be right there" friend, the lumberjacks and viking, my "don't move I'm calling right now" friend, my computer genius, the special people at Emily's school who give her the confidence to walk in each day and keep on walking, our PT, our chocolate store friends, Emily's rat supplier, hip hop Nick, those who send little notes, other RSD sufferers (Renee and Judy) that laugh through the pain and show me a way forward and those who just come to me with rolled up sleeves ready for action are just amazing. You know who you are :) To you I say THANK YOU so very much. WE have got Emily this far, we as a team and together we'll keep Emily walking ...