It’s midnight and I’m writing here sitting on an old hospital chair watching Maliyah sleep. You would think that the exhaustion from the last few days events would have taken over but I just can’t turn my mind off.

She will randomly through out the the day say “High Five!” with her little hand raised and ready for you to not leave her hanging and then she will usually say “Knuckles!” with her hand in a fist ready for you to make the “pow” noise as you give her a fist bump. She will then smile from ear to ear and go on her merry way.

Adam and I have had some heart to heart talks lately and we’re coming to the realization (slowly) that there is nothing we can do to change Maliyah’s diagnosis. I’ve noticed that my mood goes up and down with her physical presentation. If she has a good day, I have a good day. If she has a bad day, I have a bad day.

This is where I start questioning everything. Is it what she ate? or is it just part of her disease process? Does she just get bloated for no reason?

Mondays are always the day that I weigh Maliyah. It’s kind of a love hate moment because I often don’t know what to expect. If she gained weight, I am then happy and relieved. If she hasn’t gained and or lost, I often question “Why” and go about running through all the possibilities of why she didn’t gain. I try not to let it affect my over all mood but…

This will be a space where we will share highlights, struggles and victories. We invite you to come with us on this journey together.