Our family just returned from a vacation and it was such a joy to see Daniel running through the sand at the beach; to hear him giggle at his sister; as they dove into the ocean to see what underwater creatures lay beneath them.
One day I watched the sun fade and the bright blue ocean that once reflected the sky turned dark with streams of vibrant pink and orange. The darkness felt warm and was broken by the streams of light that reflected from it.
Our journey with Daniel has been like that; sometimes when things are dark their can still be a warmth that we feel because people in our lives have reflected a light that gives us peace. Will and I learned that a trip like this is a once in a lifetime trip for us, and we soaked up every minute. Two days before we left we received the news that Daniels medication has been approved through Trillium, and now that we are home his steroids are being reduced again. This week he has two hospital days, tomorrow he has his infusion and a pulmonary function test and Thursday he has clinic visits with Respirology.
Long days in hospital are our normal and that is ok, because if it means he is smiling and not in pain then those long days are so worth it. None of us knows what are future holds, or what each day will look like but if we can find people and moments in our lives who can even for a moment break the darkness and reflect the light of the Son then there is hope.