Meet the McNeil Family

Meet the McNeil Family

Thursday, April 30, 2015

Chill Out

A friend of mine gave us the most wonderful hand-me-downs ever. Chill Out Chairs! I have been trying to get insurance to approve them for years, without any luck. They are super comfy positioning chairs, with ottomans to elevate the legs. Waverly is developing scoliosis, so keeping her positioned straight and in the paper alignment is important. These chairs make it possible, while keeping her cozy. What a fantastic gift for Waverly & Oliver.

Tuesday, April 21, 2015


I have had two significant dreams in my lifetime. Dreams that felt so incredibly real it was difficult to return to reality upon waking.

The first was a number of years ago. Waverly had lost all of her speech and I longed to hear her sweet voice again. I dreamt that she was playing in the forest. She was wearing a lovely little dress and she was singing a song Grover used to sing on 'Sesame Street': "around, around, around, around, over, under, through". And as she said each word she would act it out - twirling around tree trucks, jumping over fallen branches and ducking under low ones.

In this particular dream, I was an observer. Watching her dance without her knowing I was there. Part of me likes to think it was a taste of her whole and healed. No more Sanfilippo encumbering her. Just a happy little girl exploring the forest, where I have always feel peace.

A few weeks ago I had another dream. A nightmare. It was horrible and I awoke screaming and crying. It is still quite personal and I want to hold the memory close to my heart, but suffice it to say it was a dream about Waverly dying. I cannot adequately express the emotions I felt when I woke up. It was the most intense pain and indescribable ache. As if I was given a brief sample of what was in store.

I haven't been able to shake the fear. Was this a premonition or preparation? Each morning I fear opening up her bedroom door.

I *thought* I had an understanding of what grief will be like, but I was reminded that I have no clue. And how does one really prepare. The tiny taste I was given while I slept was enough to terrify me and weaken me.

A few weeks have passed and I can still vividly recall the dream. I can feel the fear. I have to keep reminding myself to be present and enjoy the moment. Make memories, soak up the smiles & giggles, steal hugs, and kiss chubby cheeks.

Oliver's 7 Year Diagnosis Anniversary

Oliver's 7 year diagnosis anniversary has come and gone. It was on my iCal and I thought about a few times during the day. My mind was elsewhere and I wanted it that way. No need to dwell. I have enough instances of sorrow and grief in my everyday life to focus on a date as a source of sadness.