On to August….

And things get real. Do you remember some of the most poignant moments in your life? Did you feel a sense of urgency? Anticipation? Euphoria?  Possibly dread?

August started with making the decision for Emma to start her senior year as a homebound student. She was able to do about 4 or 5 hours a day of regular activities but she was easily tired out. She was invigorated by her schoolwork and looked forward to the new classes. We got her enrolled and set up for the homebound process.


Her older sister, Claressa, decided to stay home from college to help out and spend time with Emma. Claressa helped with Emma’s dietary changes. We juiced everyday, tried new recipes without sugar, salt, and low gluten. We tried a battalion of vitamins and other supplements.

Looking back I realize I was in denial. In my mind I was thinking if we could keep Emma healthy we could get to her 18th birthday in December and then she would be eligible for adult treatments. I had started researching different trials for adults. If we could just make it to December……

The last week of August was busy. Family and friends came to visit Emma. She was tiring easily but still wanted to see everyone. We had some wonderful times. She was able to see friends she hadn’t seen in a long time. And spend time with her best friend chatting and having her nails painted a beautiful leaf green.

She spent several nights in bed with me. For some reason 2-3 am was her best time. She was awake and alert. We had some wonderful chats in these small hours. We talked about how much she loved her friends and other ‘normal’ things.

We never talked about death and dying. From the beginning of her journey into the shadow of death we never talked very much about death. Emma loved fairytale endings. She used to rant on passionately about how she had no time for ‘real-life’ stories or movies. She said, ‘I have enough real life for two lifetimes, I don’t want to read about it or watch it’.

So we spent the last week in August with a dwindling number of waking hours. Emma spent most of her time in softie clothes or PJ’s. Fortunately we had an AMAZING  team of hospice workers who visited regularly and helped us with the small details of the struggle.

Tuesday night was the last time we got to talk with Emma. She had supper in bed around 9pm of brown rice and veggies but didn’t eat much. I came in to wake her to take her meds about 11 or 12 but couldn’t get her to open her eyes or take the meds. I was worried but figured I’d let her sleep and come back later. She was in pain enough that it was bad to skip her meds. She was not responsive after that last med time.

The next few days were purely hellish for all of us. We were in an uncharted land. Without the help of our dedicated hospice nurses we wouldn’t have been able to make it. We sat with Emma, held her hand, played music for her, talked to her, prayed with her and for her. We told her all the things we wanted to say, and finally we said goodbye and told her it was ok to go.

And we held each other, we cried….. for the terrible loss, but more than anything for the injustice of a life cut short in its prime.

Our beautiful Sunshine girl. The perpetual innocent, sweet, funny girl, was gone.

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It has been five months since she left. I still have days when I can’t believe she’s not with us in this space. That I can’t hug her, kiss her, and hear her laughter.

How did this happen? Why did she have to die and not someone else? Useless questions…..

All I have to say now, I was blessed! Truly blessed to be her mother for those beautiful 17 years! And if it is possible, there will be a day, a beautiful day….when I will hold her in my arms again.


Thank you! To all our AMAZING support team. Those who love us so much and continue to stand by us!


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