Zero

Do you ever get the feeling you are getting left behind a little? Abandoned perhaps? 

I do. Especially with the NHS. God love them, sometimes they are fantastic but 75% of the time they are just useless. 

When Zack was a baby we were never out of the doctors office, it was appointment after appointment. Now, he is school age it seems the importance or urgency to treat him has lessened. 

I shall give you an example, Zack has not had physiotherapy at school or at home for months. The physiotherapist left so now there is only one covering the whole of our area. Therefore my son receives zero physiotherapy. This has been going on since around May. 

Example two, we have been trying to get a sleep study organised at home for the past two months. We have just organised and completed that study over the last two days and this was only due to an irritated phone call and threats of letters of complaint.

Example three, and perhaps the toughest situation, is that Zack's epilepsy is not under control. We did have a blip for a week whereby he went to having no seizures but now we are back to the old school of single dipity doos rather than clusters. As we are between consultants appointments are not very forthcoming, I mean seriously how long do you have to wait for a second opinion?

You can probably guess from this post that I am none too happy with how things are progressing. Is this the future? Is this the future for Zack as he gets older?

I remember talking to a mum of an adult who was twenty years old and he had severe special needs. I asked her what were the services like in adulthood. Rubbish, she replied, you get nothing, it all filters out.

Does this mean that babies with special needs deserve our attention and services more than the growing child? Is it assumed that as a child makes no progress they do not need further support and help?
I hope not, because to me that is a society that gives up and that is something that doesn't happen in this house. 

Sincerely pissed off with the NHS. Sort. It. Out.

Nanny Barbara

I haven't blogged for a while because over a month ago tragedy struck. My mother, Zack's Nanny Barbara, died suddenly from a heart attack on the 5th June.

Such monumental news hit me side on the face and took my legs from under me. 

Zack was lucky to have known his nanny Barbara, she worshipped that little boy. She would come in to the house pick him up and just cuddle him, smothering him with kisses. I used to joke with her that if she looked after Zack constantly then he would get nothing done because all she would do was cuddle him.

As you can imagine the grief has been both shocking and devastating. I miss my mum. I miss phoning her to tell her about the small little achievements Zack has made or about the ridiculous appointment I've just been too.

In my heart I know she will always be with us and I always feel her nearby. I wish she was still with us but I take comfort knowing that Zack will have an Angel watching him. I'm sorry I cannot write any more, I just don't have the words.

In memory of my Mother, Nanny Barbara. We love you. We miss you.