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Livy's Hope Blog

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Hope For The Rainbow

Yesterday was a very sad and difficult day for a very special family. Gavin, a little 5-1/2 year old boy, was taken so early from them and they said their good-byes. Thousands of people are now following Kate's blog Chasing Rainbows and have become one big, supportive, online family. Many of us drew Gavin's name on our hands to remember him. It was one small gesture to let his family know we were thinking about them and to remind us how fragile and precious life is. As the day went on, Gavin's name and rainbow faded on my hand. By this morning, it had vanished. I placed my other hand over where it had been and took some deep breaths. This little boy's story hits so close to home. A friend of mine said it perfectly, "It brings our greatest fears to the surface".

Shortly after Livy was born we were told she had a limited amount of time to live. It shook Jon and me to the core and we had no idea how to handle the emotions that came afterwards. In that moment, the hope of a beautiful childhood faded away. We went to Boston Children's Hospital seeking a second opinion, holding on desperately to the idea that the first doctor was wrong. Instead, the diagnosis was confirmed. We sat down with the Ethicist at the hospital and had the most surreal conversation about signing a DNR (Do Not Resuscitate) for Livy. We had come face to face with the gruesome fact that we were to decide her fate. It had actually come to that and we were beside ourselves. We were new parents making one of the worst decisions of our lives. Ultimately, we did not sign a DNR but we do understand and respect why parents do put them in place.

Looking at Livy now, it is hard to imagine she was in such a delicate state so many times. Stories like Gavin's remind us of the fragility of our children. Our fears run deep when we think about SUDEP (Sudden unexplained death in epilepsy) and other complications that can quickly arise. Looking at the strength and character of this amazing family gives us hope that each of our children are here for a beautiful purpose, leaving their mark forever on our hearts. I hope Gavin catches his rainbow and finds his peace.

Hope For The Rainbow
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Thursday, 21 September 2017

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