Step by Step

I am not sure who first spoke these words in my haring but they are words of great meaning and I attribute them to a very dear friend from my past with whom we have lost contact over the years.

He does not lead me year by year,
nor even day by day,
But step by step my master leads,
My Saviour shows the way!


How true! Oftimes we are asked to look to the future and what our hopes and aims are for next week, next month next year or further. I find this really hard especially when talking about the future for my children whose future is so bleak, in human terms.

I remember planning so much for "after Luke's surgery". We had planned a party once he was over the initial pain and wanting something to take his mind off the cast. (Luke had major hip surgery two days before his 4th birthday.) We spent time planning a wonderful trip to Snowdonia once he was out of a cast and could again be carried in a back pack...we loved walking and Luke loved the great out doors. It was something to look forward to.

However we never did any of those things, Even the birthday cake the hospital kindly arranged for him was never eaten! Luke died the morning after surgery, all of our future together suddenly disappeared! All of our hopes and dreams and plans came to nothing! The party we planned suddenly changed it's format. Instead of our house full of excited 3-5 year olds we had a house full of adults, insead of laughter there were tears and silences.

What difference thought for Luke, What ecitement and laughter and singing greated him on his birthday, WOW what a party! The Glory that he now shares in is far more than we could ever have given!

Six months after Lukes death Jonathan joined our family. What important lessons we hd learned from the eight months we parented Luke. We had a knowledge of the disabled children's services in our area, we knew how to access the professonals and we knew some of them as good friends. We started to look at therapy input and consider how we would juggle parenting with work....then Jonathan was diagnosed wih serious heart defects, suddenly this tiny life was in jeapordy too! We were sharply reminded of taking our journey step by step. Between our grief and confusion and fear we learnt to use each moment. instead of planning what we would do after surgery we woke each day and judged Jonthan's well being the essential things we had o accomplish and what fun we could pack into our day. We took many impromptu trips out, living amdist the Penine Hills we could easily take trios that cost little but were packed with fun and adventure.
One trip we had taken with Luke the Month before he died was to Chester Zoo, this was somethin we wanted to repeat with Jonathan and so just a week before he was due for his surgery we once again visited one of Luke's favourite places. It was emotioonal, dificult, but also great fun. Luke had loved the Chimpanzees and the Elephants, and Elephants are still our big connection to Luke Even to this day!
Our life continues to be a rollercoaster in many ways, frequently we make plans for six months ahead and frequently we have to change them. However we still make use of the good moments, and we still look to God's guidance frequenly, maybe no as frequently as we should. I am not perfect! I am nothing Amazing and I could easily drown myself in the nearest Mill Pond with the weight of the medals well meaning folk want to hang round my neck! By God's Grace alone do we achieve what we achieve. Thankfully God's Grace is not dependant on me! Praying harder or praying in the right way or using the right words will not increase the amount of Grace God gives me....phew am I grateful for that!

I still manage to hang on to the burden's God asks me to Leave at the foot of the cross! But I am so well trained in not looking to the future that I now find it impossible to consider the future for my children. i am asked to look at collge placements for Jonathan, consider what Rosie will do after school. Go take a look at the possibilities. Can I just hope the right placement will hit m in the face? is that irresponsible? I have some literature here and I have spoken to people about what is available but taking it any further than that is just beyond me! Mind you, it isn't only me. Jonathan is 18 in exactly 2 months time, at that point children with disabilities team will consider him no more! Yet we are still waiting for a proper hand over to adult services! All of his support from social services will cease on 17th March i onde what will actually happen! I canno even muster up enough enthusiasm to consider it! I have far more Faith in God than I do in Social Services and for that I am soo soo grateful!
And so more than ever
I do not know what the future holds, but I am glad I know who holds the future!