I really struggled to see the positives in E's appointment at GOSH. Blinded by exhaustion, confused by my feelings about the consultant's plan and having lost hope, I just wanted to give up and run away. I felt totally trapped on the hamster wheel of life with a child with undiagnosed Special Educational Needs.
In the last six months, running has eased the feelings of stress and my own anxiety. I (obviously) haven't left my heart in San Fransico as the title suggests, but I do seem to have left my mojo in London.
The need to run has gone. It is just another chore to add to the 'to do' list. I've had enough of trying, enough of feeling like I am working so hard all of the time and going absolutely nowhere. I can't fight any more. I can't be the person leading E's healthcare; I don't possess the knowledge or resources to do so and I feel like I am failing her. I feel like I have had to fight for five long years and now I want to stop. More time waiting for something to happen is just more time where she is falling further behind her peers, more anxiety builds, and her behaviour at home worsens.
I can't fix this.
Conversations with my closest family and friends verified my disappointment and confusion. They shared their confidence in me, in my ability to carry on and to hold my hand through the toughest times. I don't share their confidence in me.
The Run Mummy Run group has provided me access to other parents who have found themselves in the same situation. I posted there, explaining I'm left feeling like I've either got to give up and accept that our situation is never going to get any better, or fight even harder for her. I feel totally defeated so option one seems the most likely... I'll never give up on my girl, and will always do my best for her, but that isn't being out, running and training for distances. I just need to be her mummy and nothing else. I can't do this any more. The following replies were full of support and kindness once again, and other parents offering their stories to comfort and advise. It makes me realise that our situation could be far worse, and although tough at times I have to be grateful for all of the good health E has, and the incredible strength and perseverance she shows.
I expected more from GOSH than they would ever be able to provide. After all, they are just another NHS Trust facing the daily challenges that every other hospital faces. Budgets, guidelines, waiting lists, boxes to tick... it goes on and on. Each and every child is unique, amazing and precious to those who love them and simply want the best possible for them. The bar set for the consultant yesterday was probably unrealistic.
Trying hard to look for the positives, we set off today to an activity which is the result of another set of hard work. Two weeks ago, the eldest girls started Equine Assisted Learning with Eloise. I spent a lot of time with horses as a child, and hold vivid memories of that time. Whenever I am cuddled into the muzzle of a horse, I feel a lovely sense of calm and warmth and I was keen to share this with the girls. Watching the girls grooming, playing and just being with the ponies gave me chance to stand back and reflect. Watching E's face filled with light and happiness as she connected with her chosen pony showed me her developing confidence and ability to learn. Watching my eldest girls learning, but also modelling confident behaviour for E to thrive from opened my eyes again to be able to see beyond special needs. Just special girls. The lady who leads saw my tiredness, and asked what I needed most for E. The answer is simple really, and I know that if I could remove E's anxiety her life would be better. I watched today to see the stress of the week leaving E as she breathed in time with her pony. The connection between them was visible as they learned to trust one another to be kind and gentle.
Now it is my turn to trust, to calm myself and to settle. The fight may not be the same, it may change, and I will allow myself to be led by my love for E, for all of my girls. And if all else fails, I will just love them some more.
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