Archive | May, 2014

Tilda’s room

25 May

Yesterday, I did the thing that I had been dreading since we knew we had to move. I took down the lights from Tilda’s wall and I took her name off her bedroom door.

Tilda’s room was incredibly special. From the minute we walked into it on the day we looked at the house, we knew that there something pretty great going on in there. There was a gorgeous view of a magnolia tree out the corner windows, a walk in robe/hidey hole and a feeling of peace and happiness. Even when we swapped her big double bed for a hospital bed and the room hosted numerous pieces of medical equipment, that magical feeling remained.

Tilda died in that room. We spent nearly every waking hour in the two weeks prior sitting in that room. Watching, waiting, surrounding her with all the love in the world. That room heard our laughter, saw our tears and felt our pain.

And when she was gone, she was still there. In the beautiful energy of that magical room. Maggie was drawn there. She would crawl in and play with Tilda’s necklaces and bracelets. I slept there some nights.

I dreaded saying goodbye to it. The thought of it would bring me to tears. But something interesting happened yesterday when I finally did that thing.

It wasn’t so bad.

Because of course we weren’t saying goodbye to her. She was coming with us. Her room was magical but she was the magician and she will always come with us wherever we go. Our new house does not have a magical room but it feels like home because we are all here together.




3 May

Today was my birthday. I have had a wonderful day with Simon and my family. I have learnt over the last 5 months that it is possible to feel happy and sad at exactly the same time. Emotions are not restricted. I am sad. I am happy. Sadness and sorrow sit within me but layered over that can be happiness at spending time out in a fancy restaurant with my lovely husband. Joy at watching Maggie laugh and play. Comfort and warmth being surrounded by my amazing family. Always thinking of Tilda. Taco as Maggie now calls her. I wish she could hear that, I think she would like it a lot.

There are big changes ahead. We are moving from this home where so much has happened. My heart hurts at the thought of leaving Tilda’s room but I know that we must. We have found a place close to friends and family and I know we will enjoy being there. Change is so hard. But we take Tilda wherever we go, in our hearts and in our memories.

Batten disease has continued to wreak havoc on our small community with the loss of more children over the last few weeks. Each loss is a reminder of its viciousness.

I am learning to live with my sadness. It sits in a place in my heart that opens and shuts. It will be a part of me forever and once upon a time I would
have thought that it might be unbearable. But it isn’t.

Today I am a year older. Perhaps wiser. Certainly sadder. Certainly ok.

Thank you so much to everyone for the birthday wishes, messages and phone calls. It has been a good day.

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