Looking into the eyes of the three most precious souls in the whole of my existence. I am not looking at them in the flesh. …..only in a photograph that was taken a few hours ago. So where are they now?
I wish they were here with me…..or should I say, more so I wish I was with them….. my three precious tots. The house is so very quite , the hustle and bustle of the young laughter and giggling has now stopped. In a way I am thankful for the silence, the noise was hurting me so badly, causing every inch of my body to stiffen in pain……but gosh, how I love to hear such happiness, despite the repercussions it causes. So why all the excitement? well today is carnival day, not only is it a fun day full of music , dance, and beautiful bright colours…..but this year , it is even more special to my angels. Why?…….because of me
My precious tots are taking part in the procession as advocates for me, alongside my One In A Million Team. Today is going to be filled with so many fairy wishes and Snowflake’s of Hope, with my two little ladies as frozen princesses and my little man wearing my Snowflake of Hope with pride upon his chest. Their excitement this morning was infectious, with high hopes from them as they were participating in a beautiful event that was going to help their mummy towards her goal for her “magic medicine”……working towards the target for my Stem Cell Transplant procedure. One would ask how a 5, 6, and 13 year old could understand the importance of the HSCT, it is incredible how their young little hearts insist on helping any way they can. My youngest princess keeps asking me if we have enough “golden nuggets ” for my “magic medicine”…..I look into her deep brown pooled eyes, tearing up, not knowing quite what to say…..but my sparkly smile shines through and I say to her “we are almost there my sweet darling”, knowing in my heart that I haven’t even touched the tip of the iceberg yet. But what is a mummy supposed to say to such a precious princess with so much hope and anticipation in her eyes?
So my extraordinary tots left today with beautiful smiles and a spring in their step, knowing today they will be helping their mummy to get her voice heard, stop me suffering in silence, and assist in getting others to see the importance of my “magic medicine”, the HSCT. I watched them leave through my bedroom window, yet again without me, tears trickling down my face…..so desperate to be part of there world again.
I was led here last night trying to figure out my place in my family…..where exactly do I fit in any more? I am constantly back and forth the hospital, or reclined in bed because my body is unable to take the physical pull or strain on my muscles and bones. I almost feel like a loose jig-saw piece…..that I belong in the puzzle, put no longer quite fit. It’s the most difficult sensation to describe, I wish I could somehow explain better, but I don’t know how. I watch my family day to day function without me being a part of their daily events…..inside I am begging and willing my body to let me be apart of them again. But the ghost makes sure it has a tight grasp on me, affecting everything and everyone one around me. Hell, is so cruel…..this is why my determination and fight for the Stem Cell Transplant grows stronger everyday…..so I can banish Stiff Person Syndrome from my world….and live the life I dream.
Along with my tots and Jason, my One In A Million Team are standing by their side…..so many Snowflake’s of Hope following…..banners and stalls set up to raise awareness of SPS, but also to promote my campaign and help other hearts in the community see what has happened to me via the destructive , progressive stages of Stiff Person Syndrome. My One In A Million Team have worked non stop for today’s carnival, quietly wishing it will help with the fundraising. I could not be more proud or feel any more gratitude than I do right this moment, as I know so many people are marching out there for me today, invisibly standing by my side and fighting the ghost with me. It is a privilege to be loved so kindly by so many…..I never knew I was and still am, so important to so many sweet souls. Hence, despite my tears I cry, the frustration I feel being trapped in my bed…..right now, I feel like the luckiest person in the world.
Team One In A Millon……for all that you are, and all that you do…….I love you xxx