The tapestry of the life of a medically complex family

Don’t Look Away

I know you see & want to look away. I know we all struggle. I know asking for help is looked down upon. I also know you rarely get what you don’t ask for.

So I am asking. I am not asking you to sacrifice your children’s college fund, grocery money, bus fare to get to work. I am asking for what you can help with- donate the amount of a cup of coffee ($1 @ McDonald’s, $2.25 @ Starbucks). Would you give up a cup of coffee for them?


I added to my family through adoption. Yes, the twins had trachs. Yes, they were all preemies. But they were supposed to be trach-free & essentially healthy by the end of preschool. Just as you parents entered parenthood with a set of expectations, I took on the care of my twins, then youngest, as any parent might.

As with all well-laid plans, things failed to go as planned. We celebrated birthday #7 with 2 trachs still in place. My “Christmas present” this year was that doctors were closing in on the diagnosis which would tie together the ongoing complex medical needs of 2 of my 3 younger kids: 1 of 2 life-limiting, degenerative genetic conditions affects them- but not the other child. She will likely continue to grow more and more healthy as she sits beside me watching her sister and brother struggle more and more.
These life events are par-for-the-course. But I need help to make our life more livable as we continue this complex medical journey. Repairing the aged electrical that inadequately meets the needs of my kids’ life supporting medical equipment is imperative & well beyond reach. Moving the washer-dryer upstairs so that it is accessible on the 4-6 days/week when I do the 20+ nebulized medication treatments of the day on my own. These are the things which would CHANGE MY FAMILY’s LIFE. Do you have spare change to change my kids’ lives?


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