It was a very busy week. Starting with the journey to say goodbye, then after a very late night an early morning meeting followed by a disturbed night it was with some weariness I dragged myself out of bed on Wednesday morning to head off with the children on the School run and then on to the hospital with Joshua for a joint vision assessment with the Orthoptist and Qualified Teacher for the Visually impaired.
This appointment was set to be a routine check up and chat over what we were still aiming for with the statement. However the routine check up showed a further deterioration we hadnt expected. The central vision in Joshua's left eye has now gone completely. He still has a little peripheral vision in that eye and can see the largest letter on the chart at about 12 inches from his eye but only when it is in the periphery not directly in front of him.
This means that in some instances Joshua will be better off closing that eye when trying to look at things....bearing in mind he can only see the largest letter at 2 mtrs with the other eye this has taken a considerable amount of his useful vision.
So once that was finished we headed off back to school then me home. David had been entertaining the Dishwasher repairman whilst I was out and was rather frustrated as it appeared he did not really know what he was doing. 3 hours and still nothing working.
Thursday morning was Jonathan's turn...off to cardiology....lots of waiting around always in this clinic so we were doing quite well to be leaving the hospital just over an hour after our appointment time. The appointment itself was somewhat of a waste of time. We had recently been to the grown up congenital heart clinic and felt that hey actually understood Jonathan's difficulties whereas althought he cardiologist has always been really pleasant locally I do wonder how much he understands of the congenital defects and the corrected heart. However I could see his point in that it was helpful to have a local Cardiologist in case of admission.
I felt like I had not stopped racing from one appointment to the next all week. Several minor meetings and appointments in between these major ones and then Friday dawned with a planned lunch out with the family support worker from the hospice. This was a welcome break in the manicness of the previous few days. It led to lots of talk about the needs of the children and the strain on us...thankfully there was more listening and agreeing on my part than acutally talking about my feelings....although I think the opposite was probably more the plan.
After our lunch I decided to go into Boston and do some things I had planned on doing on Saturday possibly not my brightest idea...struggling big time to walk without a wheelchair to lean on! However it did achieve one thing and I have had a really laid back weekend. Doing only the absolute essentials I have managed to chill out and spend a fair amount of time sat down....
This week looks to be just as exhausting so I am glad I have managed to rest somewhat.....if you are familiar with the spoon theory, I think I am 6 months in debt!
Your prayers are always appreciated! I will finish with this beautiful picture of our gorgeous eldest daughter!
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