My sweet little Mollie-Jai, brought this home from school today. She was ever so excited because her school and teachers are going to help make me better, her little face lit up as if was Christmas morning, bless her little heart.
I must admit , I cried out of sheer happiness. I guess I was over whelmed by such loving support. It has been a very long time since I have been able to go to my two youngest tot’s school, not even able to make it in my wheelchair, without coursing horrendous spasms.
My goodness, I have missed out on so much with my tot’s because of this life shattering disease. I have missed so many precious moments, school Christmas concerts, sports days, parent/ teacher consultations, Eisteddfods and so much more. I will never be able to turn back time to relieve these moments, that are such precious memories.
Stiff Person Syndrome has stolen all these precious moments that I should have shared with my beautiful tot’s. Such a cruel illness, snatching my life away, taking away my tot’s mummy. ..
…..it has no right to do so.
I would like to thank Victoria Primary School Abersychan, for showing their love and support. Mollie-Jai can’t wait for her school to make me better. She said one of her friends looked at my photo today and gave here a cuddle because he said I looked sick and was sad for my sweet princess.
Why did Stiff Person Syndrome rare it’s ugly head? It has broken me by stealing my tot’s away from me. I literally am unable to do anything with them. Even their sweet voices, laughter and movement affects my body……triggering yet another spasm. So Jay closes the door, cocoons me in silence, my tot’s out of reach, always on the other side of the door. My poor sweet tot’s don’t deserve to have to live tis way. I try and hide my tears, I lay here crying alone because of my tot’s and what they have lost, the fear in their little eyes when they see me spasm, fall over when fighting to wall walk a little. I try and shelter my three tot’s as much as I can from them seeing the horror of SPS. …..which in turn draws a bigger divide between us. I am segregated, isolated from my sweet, precious family.
I was astonished to see this from Mollie-Jai’s and Dylan s school this afternoon. What a beautiful gesture for there school to do for me….for us as a family.
So I would like to say a loving, sincere thankyou to the head teacher, all members of staff, all parents, and children of Victoria Primary School, for caring about me and my family so much
Victoria Primary School. …..you showed me a ray of hope today. Thankyou with all my heart and soul xxx