Scottish island mum: Day 338 - The lights still shine very brightly indeed. xx

Wednesday 4th December

It is another hectic day for Scottish island mum and promising to get even busier as orders are starting to flood in for our wreaths. This is very good news indeed but there is a bit of pressure because both Pete and Harry are really poorly. At the rate we are going I will need to be coppicing some more willow. This is just the start we dreamed of for whimsical willow and it makes us very excited for the future.

This evening I am doing a wreath making demonstration on the other side of the island but once home I am staying indoors until the storm passes. This is shaping up to be quite a storm with winds in excess of 80 miles per hour and, once again, the island braces itself. Nothing will get on or off the island tomorrow so we rushed to do a quick post out before 2pm today and will now wait until Friday. I don't want my wreaths sitting underneath heavy boxes in the PO.

Last night I was sent a piece of writing by Donna. Donna is Megan's mother and she has been by Megan's side every step of the way. To have one chronically sick child is one thing but to have two is something else entirely. Donna was moved by the support she received from readers of Scottish island mum and she was, thus, moved to write a short piece. My favourite book is To Kill a Mocking bird because it is sends out the best of lessons in life. It convinces us that we can not know other people's lives unless we step inside their shoes and walk about for a bit. I can have sympathy for Donna and her lovely children but not empathy because I don't know what her life is really like. This is perhaps only partially true because when I visit I do work very hard to see the world through their eyes.

That said, this piece of writing allows us all to see what her life can be like. It is a blessing to read this as it helps me understand and that allows me to be of better use to Donna and her family. See what you think. I know that Donna would welcome any feedback.

Visit number one of winter 2013 (but the third this of this year), and it occurs to me that my motherhood has been partially defined by my relationship with the paediatric ward of our local hospital. Both my children suffer chronic health conditions which means that short but intense chunks of their time are spent being cared for by NHS angels while I hover with tissues, cold drinks and cuddles, watching with frustration when I can't make them magically better, snatching moments of sleep in a busy ward that is full of the noises of trying to keep quiet, treasuring the peace on the face of my child who has at last managed to fall asleep.

Since the birth of my second child, who spent the first four weeks of his life intensely ill in hospital, this has been the pattern of our lives. My little family unit operates extremely well when one of our children has to stay in hospital and my husband and I have our roles; I am the primary carer and stay with them, and my husband takes over at home and brings us essentials as directed. Both children are seen regularly by their consultants so the hospital has become a very familiar place over the years, and what has struck me most, particularly on this stay, is the consistency and commitment of the nursing staff which I cannot praise highly enough. Because my children are regular patients the nurses have come to know them and their medical records, and are canny enough to separate the two. If it wasn't for the fact the Justine, a nurse who knew Megan well, was on night duty last night and took matters into her own hands, we wouldn't be looking at going home today.

Seeing myself as a long standing resident of the hospital I have observed the frustration and despair in other mums and have been able to share my experiences and coping strategies with them, which I hope has helped. A quick hug or holding a hand saying 'I understand' shared between mums, the quiet army behind the nurses who want so desperately to be able to take their children's ills away, can make so much difference. I remember talking to such an inspirational woman when I was first in with my son. She and her family had adopted their daughter from Russia into their already large family. Their adopted daughter was born with her all her lower internal organs on the outside of her body and when I asked what moved her to do this she replied, quite calmly, "because we could". She shared with me tips of how to make being in hospital for long periods of time easier, and I try to do the same.

My children are at different stages of their conditions now; Megan hopefully beginning to grow out of hers and likely to need increasingly less treatment and Joshua unfortunately approaching the time when his remaining kidney is going to fail and needing a transplant, so the dynamic of my relationship with the paediatric ward is going to change. It won't be here for a start, and it will be for longer periods of time. But I know I will be able to rely on the nurses who have always been there for my children, always cared for them and taken extra time to talk to me as a mother and not a statistic. I will be able to rely on my support structure of family and friends near and far, who always do what is needed. And there will be someone in that silent army who has been there before who will see me struggle who will give me a hug and hold my hand and say "I understand", and they will help to make it that little bit easier.

The first photo is an old one when the children were much younger but it is how I always think of them. Megan was well back in those days and Joshua was obviously coping better with his lack of kidney function. I love that life is shining out of both of them. Donna and Alan have made sure those lights continue to shine even through the darkest of times. This takes courage. The second photo was taken earlier this year and I love that they both assert their personalities through it.