Hope, dreams and fantasies

Its Sunday and we are absolutely shattered. A potential lie in which never came to fruitian. Ava liked 6am!! With Sunday also comes the closure of the little cafe which has become our breakfast haven these last few days. Back to the main restaurant we went and I was immediately reminded why I didn't like it very much. The eating area is a vast expanse of space which has an air of saddness surrounding it. Lots of families with their poorly child, wife, husband sit and eat their food in mainly silence. It feels like they came here for a miracle but dare not hope for it in case they are dissapointed and I needn't talk as I sometimes feel the same. Conflicting emotions are constantly with me. Did I do the right thing bringing Ava here? Am I chasing a dream that can never come true? But if I do nothing how will we ever know? Its hard and yet again we received news of Avas condition that has never been discussed before. Her spasticity down her left side is not just confined to her arm, hand, leg and foot. It is also down her face and her mouth. Most likely one of the reasons it has taken so long to teach her to swallow and continues to be a struggle. She has very little reflexes on her lips too. Thankfully the speech therapist has taught us how to help her. Very simple exercises for 10 minutes a day. It maddens me yet again that we had to travel many miles to discover this issue. On the other hand, if I had chosen not to Hope and not to believe we can help Ava I still wouldn't know this news. Speech therapy is almost non existent in England. We have a therapist but only see our therapist intermittently at best and mainly if there is an issue. A great example of the under staffing and inefficiency of our NHS. All boiling down to money - these are peoples lives you people in parliament are messing about with. What makes it harder to understand is that our glorious leader had a severely disabled son but lets not beat about the bush - he didn't have to suffer the ludicrously understaffed service of the NHS. Perhaps if he did he wouldn't have so little empathy for a generation of parents who are only wanting what their child needs. Because of this knowledge I will always fight for my children and seek help in my never ending quest to make Ava better.