This past week I have felt as if I have been walking on shifting sands, having to intermittently steady myself regain my balance and slowly cautiously walk forwards feeling unsure with every step. I feel we have now reached firmer ground, the sand held more securely in place by sea grasses yet a thoughtless step could still cause us to slip and fall.
Never a truer word said! Whatever happens there is always another choice.
I suppose the catalyst for this has been looming deadlines regarding the girls education which has underlined in thick black sharpie exactly how unwell they all are. Funnily enough it is much easier than you would imagine to view the girls lives as not THAT abnormal, they’re not THAT sick in order to keep on going day in day out. Then deadlines arrive and you realise exactly what they CAN’T do and that in actual fact they are really not as well as you had allowed yourself to believe.
Tasha and Tara are trying to focus on positive goals which can allow them to pursue their photography/media ambitions. College/school are not a possibility for them – they couldn’t physically manage to get there and back, let alone study whilst there too. So we have opted for Nisai Academy for them to take the two year Maths GCSE and the one year English iGCSE. The TYMES Trust advocate Nisai particularly for children with ME as the Academy are used to working with these children and understand the nature of the illness. Also the girls can “attend” their lessons in bed in their pyjamas if necessary and all the live lessons are recorded to allow for revision, brain fog issues and if they are unable to attend the live lesson due to any ME relapse then it can be watched at a later date once well enough to do so. We shall be starting these with the girls in September.
Keisha is due to take her AS level exams soon. This is a HUGE problem Her college have been above and beyond understanding and incredibly helpful and supportive. BUT even with all this help and support, providing a quiet room to take the mock exams in by herself – she has not been able to take them – she has had numerous severe panic attacks, PTSD issues and so I have invigilated the exams (emailed to my by her tutors) at home. EVEN then she has been unable to take them – hyperventilating, shaking and just unable to cope. We have contacted her psychiatrist and our family liaison worker and made the decision along with her College head that she should sadly, now drop out. The assault that took place towards the end of last year has impacted on her terribly and until she receives the specialist therapy she needs we are in a place where she needs no further stress or pressure in her life. We are looking at local animal sanctuaries to see if they can find some voluntary work for her to help care for the animals and also perhaps a gentle jewellery making course or something in a similar creative vein.
The most important lesson from all this we are sharing with our daughters is that life throws you many different challenges and it is how you rise to these that counts. You don’t have to follow the well worn route that many others take – sometimes you have to step off the path to find your own way forward. For my girls this has proved to be so very true. They are all incredibly bright and artistic girls – if health had been their friend then they would have followed a mundane academic route and done very well too. However, life has chosen a different path from them and thrown them a few curve balls to set them on their way. Tasha is hoping to find a future with her photography, Tara media and Keisha jewellery making, ceramics and possibly some other complementary therapies such as crystal healing etc.
We have no doubt in our minds that even though the girls will not hold pieces of paper printed with qualifications their futures still hold so much promise for them. They have ambition, drive and artistic talent which we know will carry them forward and be their route to provide for themselves when they fly the nest and strike out on their own.
So for now – we negotiate the shifting sands that are under our feet, taking each day, week, month, year at a time. Facing each new challenge together as a family, standing together to support each other through our sticky patches pulling each other along.
So a message for my wonderful trio, a wonderful quote which is so true “I love you and would never leave you. During your times of trial and suffering when you see only one set of footprints in the sand…it was then that I carried you.”