Peaks and Valleys

One of the toughest aspects of being Virginia's mother is that I never know what's just around the corner. Obviously this is the case for all of us, but the frequency with which we come crashing down from a mountainous high is what puts us in a pretty unique category of people. One minute we are doing great. Enjoying our family, grateful for our three children, and feeling like everything is going to be ok. The next minute we are in the ER having a chest x-ray to see if Sissy has pneumonia. One minute starting out on a walk, the next minute doing CPR because she quit breathing during a seizure.

The contrast isn't always so extreme, but the constant roller coaster ride leaves us feeling pretty spent.

Yesterday we went to the botanical gardens for two hours while prospective buyers were looking at our house. Obviously I took drinks for the little two because it was warm and I knew they would get thirsty. I took a drink for Virginia, too, but every sip she took made her cough violently. We went to get her a milkshake when we left, but that wasn't any better. She is aspirating and I honestly shouldn't be giving her anything by mouth, but what hell is that?

Life is pure and simple for Wills and Eliza. Ice cream is a treat, not a danger. They can drink water until their thirst is fully quenched. But there is nothing we can do to make those things a possibility for Virginia and that is sad.

Last night she had lots of trouble going to sleep. We tried everything, but she essentially screamed for two hours. We repositioned her about ten times after she fell asleep and she still woke up at five, coughing like crazy and in immediate need of a breathing treatment. She screamed and coughed until about 7 because her throat hurt and all the gunk she is struggling to cough up obviously frustrates her.

The ulcer under her tongue is huge again. Her tongue thrust is almost constant and about twenty times a day she jumps in pain because her teeth hit the ulcer. It bled three times yesterday.

I woke up this morning feeling defeated and like I couldn't take one more minute of this. Virginia struggles so much I can't even comprehend all that is wrong at any given moment. Her body even struggles in her sleep. By the time she quit yelling at 7, I felt hopeless. I mean, how can she go on like this?

I knew it was supposed to rain this afternoon, so about 10 I took Virginia and Eliza on a walk. Eliza walks and I push Sissy, so we don't usually get too far. Today we made it all the way to the creek and they lasted two hours, throwing rocks, chasing a blue heron, and we were all just happy to be together.

In those moments today by the creek, I couldn't have imagined anything better. My life couldn't have been more perfect.


The moments of happiness give Virginia and me enough strength to get through the next valley. Right now she is coughing in her bed, struggling to get to sleep. May God bless her and may He give us more moments of simple joy tomorrow.