Who I was before all this…..

So amazingly I’ve been receiving such over whelming support from family and friends but also complete and utter strangers. I suppose that is what blows me away the amount of people who care. I’m just me, a momma trying to teach by living and by example my girls how to overcome challenges we may face in life, hence our motto just keep swimming.

Medically, it was decided with my team to stop my ecp treatment which was once a month 2 times a week. This meant my line got removed. I had it in since october. Today was the first time i could shower and had no bandage it felt amazing. With a line in i had to go to the royal once a week to get my line flushed and having a line in is just another way to get an infection. I was so happy to have it removed. I now only have to go to the royal once a month. That day ill be seen in clinic, then get my blood tested and get human antibodies to boast my immune system and pentamidine which coats my lungs to help prevent pmenimia. That is unless I feel unwell or have any concerns. So that gives me more family time and time to make memories as and when I feel up to it. I am also on steroids which have made a huge difference in my quality of life. As a result I managed a trip out on my scooter to the local park and berry picking. We are going to try and do something little a couple of times a week.

I went to willow brook hospice this week to meet with the creative therapist to see if she could help me come up with and create different ways to preserve memories for the girls. It was such a beautiful relaxing place. I showed her all I’ve done and she gave me a few more ideas. I’m joining a group on Wednesday mornings for 2 hours where I can be supported and create art memories or creative ways to create for my girls. I’m going to start with my hands in clay like stepping stones. Anyway I’m also being referred for 6 1 hour holistic therapy and massage sessions which sounds awesome. I felt very lucky that these are on offer.

Anyway another idea she had is to write letters of  advice and life experiences and who I was before all this happened. It is a great idea and I’ve already started with letters I wrote a 8 page letter about puberty haha. It was great to think I could share momma advice for later in life. It also made me think about who I was and I thought I’d like to blog about that so I’ll be brief but I am so much more then a terminal cancer patient and a momma.

I loved horse back riding when I was a kid. I had A horse and loved being at the barn. I started this when I was about 10 after a Girl Scout field trip. The barn gave me a chance to be me, I wasn’t a very um cool kid but I fit in there. Anyway through horses I got involved at special equestrians, which is a riding and driving programme for people with special needs. Itis where and how I decided I wanted to became a special needs teacher. I loved volunteering there I made amazing friendships, I leaned an amazing foundation for my future career and I just loved being there. Through there I got involved with special olympics and even went to the world games in north Caroline. I loved seeing the people we helped overcome obstacles with the help of an amazing animal. I loved volunteering and helping othes, I used to volunteer at Christ Home and I befriended a little 2 year old girl who stole my heart. I also used to volunteer at a week long sleep away camp for underprivledged kids called camp discovery. I loved being a part of that programme and we were assigned 1 child for the week. It was a tough week but amazing.  Anyway, in high school I was a geek. I felt like I could be myself at the barn but high school I kinda blanked out. I was in the marching band though and I made some amazing friendships that got me through those years. Even from an early age I had a desire to travel and see the world, I loved journaling, reading, and dreaming. I got a chance to go to Europe my 1st year in high school I was 14. I knew no one going but jumped at the chance to be able to travel. We went to Switzerland, Germany and France. The spark then was ignited and I couldn’t wait to see more. I loved seeing the new places and how others lived. The following year I got to go back and went to Spain, France and England. After that any chance I got to explore I took it. Whether it was locally or far away.  Anyway I started looking at colleges and fell in love with lock haven university. I knew no one but it was 3 hours from home in a very small town with lots of open space. It also had a travel abroad programme and I decided then I would go to Australia to study for a semester. I studied special education and primary education I loved every minute of it. I never did well in school but at uni I excelled for the first time in my life.

I made my lifelong friends in uni and discovered who I was. I also studied in Australia, I went my junior year. I knew no one going but I went. I remember sitting in my room, crying, thinking what have I done, then I walked out my room ran into a guy who said your American, there are other Americans here and the adventure began. I loved to explore and my time there was some of the best months ever. I played sport which I was not good at but loved it. I went skydiving, scuba diving, rode a camel, traveled 2 weeks camping through the outback and a hot air balloon ride to name a few. I  made lasting friendships and amazing memories.

After I came home I was even more determined to see the world. I decided after uni I wanted to move to Hawaii and teach for a year. That is just what I did. Though before going to Hawaii in 2004 I got my first e-mail from Amanda Plumb. So along with the excitiment of gradtuating college my first ever real relationship was beginging. Mand knew my dream was to go to Hawaii and teach so after visiting Mand in England for 5 days I moved to Hawaii. We decided, Mand and I, that I should follow my dream and if we were meant to last we would. I moved out there not knowing anyone and just taking a risk. It was amazing. Scary as all get out but Im thrilled I did it. I again made life long friends and really got to live and experience the Hawaiian culture. I loved my students and fellow co-workers. I had some amazing adventures, though everyday was an experinece, but some major hghlights were  shark diving, hula classes, going in an active volcano, exploring the different islands and Ohau where I lived….. but there is too many to name. Mand came over for the month of April and it was magically. I loved sharing the beauty of the islands with her. There is nothing like driving to work along the coast and seeing dolphins jump in and out the water or going for a hike and seeing blue wales. We decided after Hawaii I would move to England.

So on the 9th of August, 2006 I moved to England, again I had no idea what the future would hold but figured why not. My mom said the worst that could happen was I would come home. This gave me the confidence to go for it. I thought if I didn’t give it a try I would never know what could be. I got a job as a teacher at Redbridge High School, a special school for students with serve to profound learning difficulties. I started there in January 2007. I loved teaching there and loved my students and my  co-workers. Living with Mand, she shared her  love of the outdoors and being active and I fell in love too. I was young and new to relationships and living with someone but we grew and learned togther. We were commited to each other and that I know is a rare gift.

We loved going for walks, being outside and camping. I  had a lot of obstacles to overcome to live here. I had to learn to drive manually and on the opposite side of the road. This was not easy for me at all. I failed my first driving test. I was also considered an unqualified teacher, though you can’t go to school here for special education and I held a special education degree, so that was extremely frustrating, but what can you do. I had a lot of steps to go through to become qualified. This included taking a science gcse test, and doing a QTS portfolio and teaching in another school as you cant be qualified in Special education over here so I had to go to a Primary school to teacher train. This was unpaid. To say it was frustrating was an understatment but it was a means to an end. I also needed to take the life in the uk test to get permanant leave to remain. I missed home and my family and friends but over time England became more and more like home too.Ive been blessed to meet some amazing people and make amazing friendships.  I was lucky and would go home for the summer break,  which is 6 weeks  here in England. We had many adventures through the years. I got to see Greece, Switzerland, Spain, Disneyland Paris, we explored England and Wales and I Ioved how we could go and discover new places. We also loved indoor rock climbing. Thats the thing about England it is so much smaller then America and you can be at the coast or in the mountains or in the middle of no where in less then a day. We also extended our lilttle family after we bought our home and got our first baby, Bramble a king charles cavalier. He is 7 now but still our first baby. We loved taking him camping and for walks. His favourite was the beach.

Through all this though,  I really struggled internally loving myself and who I was. After a while I decided I needed to do something I weighed 15 stone 5 lbs or 215lbs and though I wouldn’t admit it I was miserable and hated myself. So I decided randomly one night to join weight watchers. It was one of the best decisions I ever made. I knew I wanted children and I knew my chances of getting pregnant would increase with weight loss. Altogther I lost 60lbs. during that time as I lost weight my confidence began to soar.

I would celebrate ever 10 lb loss. First, we took up snowboarding at the chill factor. I loved it and was hooked. We did that when I got under 200lbs as I couldn’t remember when I had been under 200. We did 3 sessions of that….Other celebrations were indoor skydiving and  horseback riding my final celebration was to shop at fat face as I could never fit in their clothes before. I felt on top of the world when I got to my goal weight. We went rock climbing and I flew up the wall I supoose climbing with 60lbs less makes it a bit easier. We loved camping and going on long walks. It was amazing. The world I felt opened up to me.I loved being outside and exercising in nature I even began to run, which was crazy and I managed after lots of training to run a 5k. I was so proud and finished just under 30 minutes.

The year I was 30, which was the year we got married, 2012. I made a list of 30 things I had never done but  wanted to do the year I was 30 instead of having a party or going away. It was so much fun. Groupon and Living Social became my friend. Some of the highlights were paragliding, flying birds of prey, flying an airplane, going in a helicopter. going to Scotland, exploring different places, going to concerts, moutain boarding ( I hated that), segway rally, I appeared in Weight Watchers Magazine, we got married… to name a few. Our wedding was a do it yourself wedding at an old manor house with about 14 apartments in the Peak district. We planned a weekend of celebration and it was like summer camp for adults.We were very lucky as so many of our friends and family could join us.  For us it was perfect. We had a fish and chip van, pork and beef sandwhiches from peak proker and a bbq. That summer we had a celebration in America, as well. During that year, we looked for things we could do and had a year of adventures. To top it off we went to Scily, for our honeymoon,  which was always my dream. It was amazing and magical. We went in October so it wasnt busy as it was the off season. We had our villa upgraded which was just on the beach and had 3 different balconies to choose from. We loved just exploring in our rental car as much as  the west coast of the island as we could, eating amazing food and going on the nearly empty beach and relaxed. When we got back in the November I got inseminated and I guess the rest has been told.

I haven’t lost my sense of adventure. I suppose that is one of the hardest things to accept, besides the obvious, is how much I can’t do that I really enjoyed. Im not angry…. Im not looking for pity ….Im just saying. When camping and walking and being outside in nature was your passion and suddenly camping is out of the question and you can’t really walk its tough but you adapt and you find new loves. You still go for walks just on your mobility scooter or in your wheelchair. You cant camp but you are alive and well at the end of the day what is more important then that. So i guess I am still me, no illness can take me away. What my passions were are still there. Our girls love going for walks and being outside. They love nature and animals.  I know they will love camping. I look forward to mand introducing our gils to our loves and sharing or adventures and for them to be able to go on their own advetntues. I hope they go on many travels. Mand and I had many places we wanted to see and I  know that though I may not be physically present I will be with them watching them follow our dreams and create their own. We bought glitter and little pots so that when they do go on adventures they can sprinkle some gliter so momma can see and be there too.  But that’s hopefully in the far off future. In the meantime, we will adapt our passions, share the art of dreaming and out love of the outdoors and nourish their curiosity of life. We will just keep swimming and  making important memories whether they are grand or mundane we celebrate everyday and cherish everyday we have togther becuase what we do doesnt matter its that we are together and we have our love for each other. We are truly blessed to be able to be with each other that is a real gift we do not take fro granted. We got this who knows what the future will hold, no one does…. what will be, will be …. our job is to live  each day and cherish each each other, please you do the same… thanks for reading, this was a long one.







One thought on “Who I was before all this…..”

  1. Sandra never doubt for a minute what a truly remarkable person you are and what an amazing legacy you leave to your girls, Amanda, your wider family and your many friends. You have enriched the lives of so many and are continuing to do so by making dying a part of living. So many people won’t discuss it or embrace it as you have done and thus we get scared and nervous about ‘saying the right thing’. You are showing so many that it is a journey that can be taken with love, respect, humour and tears and also with hope and purpose.


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