Living an adapted full life until I can’t

We have been busy and I thought it was time to update all you amazing people. I try to update once a month after my monthly hospital appointments….

As for this months, it was last Friday, I had loads of blood tests done to test my immune system’s blood levels. the test names made no sense to me but I’ve not received a phone call so in my eyes no news is good news. These tests will see if I still need antibodies once a month and pentamodine, which is a breathing treatment I get once a month that coats my lungs to prevent pneumonia. Anyway, clinic wise we have decided to try to reduce my steroids from 30 to 20. I don’t however, want to go lower then 20 as my energy levels will then be effected. So for 2 weeks I’m at 25 then for 2 weeks I’m at 20. Then if all is okay I will remain there. Though for appearances I’d love to be off them as I hate my fat face and bloated body but I have learned to accept them as I am like a new person on steriods. I am just vain. Yes, I’m told I’m terminal but I am still a girl and I am still vain.  My chest infection is gone but I have been left with scar tissue filled lungs which results in random coughing that makes me sound like I have smoked for years and a lovely husky voice. My mobility is getting worse but I’m happy with life and in my world I feel good. To most that would probably equate to horrible but for me its good. My docotor said to just keep doing what I’m doing because it is working, no medical reason is there for how I am still alive and there is no need to question it.

Last month we started our adapted family fun list once my steroids kicked in and I began to have energy again. I accepted my wheel chair and my limitations and began to find ways to still make memories and live life with my family rather then just living in my lounge. This month we have been so busy making memories and well educating the girls in the world. They are sponges right now and absorbing everything. They are learning so much for our outings. Their imaginations are phenomenal and their memories and stories they tell are so exciting and fun. Seriously being with them and Amanda and having adventures is a pure joy. I know we are so blessed despite it all and so beyond lucky to live the life we live. Yes, I have complaints and limitations some major okay some huge but I get to spend everyday with the ones I love and we are trying our best to live a very full life. So  to answer anyones questions, no the girls aren’t in nursery. Over in England they are eligible for nursery from 3 years of age, 15 hours a week. originally, I had planned on being in remission and was going to use this year as my maternity leave with the girls…. well life never goes how you planned. But since Amanda and I are both off, her on sabbatical to be my carer and well Im retired we are blessed to both be home with our girls. I suppose technically we are home schooling though at this age life is about playing, socializing, being messy and having fun and if learning occurs which every educator knows it does then it does.For instance, today was about being lil farmers and the amount of knowledge they gained from our day out was immense. They are little sponges absorbing everything and we couldn’t be prouder. They are so good and kind and loving , okay I’m obnoxious but well Im a mum thats my job. I was raised to take my job very seriously I was after all trained by the best.

So reflecting on this past month I have realised a very valuable life lesson or truth I suppose you could say and its huge really….. When I got my terminal diagnosis back in January I felt like it was… quick make as many memories as you can before you die. Dieing was always there. Being terminal and thinking this is the last time was a constant…. then I went down hill majorly…. I had a really rough few months where to be honest I merely existed. I was exhausted, had no appetite and well was beginning to give up as a result. Not a fun place to be really. But that was my life I felt like I was dieing or waiting to die. When I spoke with my doctors the decision was to put me on steroids and see if that would help.

Fast forward a few weeks and well they worked. I had to then accept my limitations and my physical challenges. Once I was able to do that with the help of some amazing visitors from America we created an adapted family fun list. Well fast forward 2 months and our adapted list has been well completed. We are now searching for more things to do. Thanks to schools being back and vouchers we are able to do loads with very little. The weather has also been our side.

I suppose now I feel like I am, we are living as a family until well i can’t anymore. It might not sound like a difference. But it is huge. I am not just existing I am living and living a life to the fullest I am capable of.

The biggest joy has been swimming with my girls. I thought this would never be achievable as I am not allowed in a public pool. Thanks to the amazing school I worked in and the amazing selfless huge hearted people I worked with my dream of swimming with my girls and teaching them to swim has become a reality. My school that I worked in has a brand new hydro therapy pool. I asked if I could use it sometime. Now because I have my own issues, besides Mand we need 1 other in the pool and 2 people on the side. All these well living angels have stepped forward, some I have worked with and some who have never met me before have stepped in to make our dream a reality. To top it off being in a hydro pool is the best physical therapy I can receive for me personally. Once a week I am weightless and my body relaxes. It is better then any pain management I take and believe I take a lot. Even better I can hold my girls, play chase and teach them a skill. When you can’t even bend down normally this is huge. I , my family will be eternally grateful to our ordinary living angels that help us make this a reality once a week.

Next Friday, I have my first horse back riding session since before the girls were born. yes it is in a therapeutic riding centre and unlike all the years I volunteered I will be the student instead of the volunteer. I need a ramp to get onto the horse and people to help steer the horse and keep me safe but and heres the BUT i will ride again. I am crying as I write this as I never thought I would ever ride a horse again. The joy I will get out of next Friday far outweighs the fact that I am disabled. I am still me I am Sandra a horse back rider who happens to have terminal cancer which has happened to left her disabled but I am still making dreams and following them.

All that said, I can still can’t think past a month at a time. I am afraid to get excited about the future and can’t bear to think about Chrstmas much less November or the end of the October for that matter. My reality is still there but unlike beofre this is at the back of my mind. It is not important really…  what is important is the here and now. Today is importsnt this moment in time matters. Whatever the future holds I hope and believe my girls will know I lived the fullest life I could until i couldn’t anymore more. And then they will carry on following my example. Becuase that is what life is about… not just floating through but swimming the hardest you possible can no matter what gets thrown at you… we only get one shot at this… I am going to make sure my one shot goes down in history maybe not by many but in my girls and my loved ones eyes and hearts.

So until next time…. love like you mean it…. cherish everyday… hug, celebrate, enjoy as best you can… keep swimming and to all the memebrs of team Sandra from the bottom of the Plumb-Bilotta’s family heart all we can say is thank you… your positive vibes, love and support means the world to us…. just keep swimming