10 May 2012

Rest Well, Dear Ainsley

As I get ready to celebrate the fifth birthday of my youngest child, I am struck by the death of a little girl I had never met, but watched from afar.

For three years, I was a bitter bitch. While dealing with my infertility, I would grumble about pink and blue bows on mailboxes, I would shout obscenities at the television whenever Pampers commercials came on. I didn't give a shit about Mothers' Day and I hated, with a passion, candle lighting ceremonies.

Unless you're a sorority girl, you probably have no clue as to what a candle lighting ceremony is. In college, if your frat boyfriend gave you his frat jersey or pin, you could have one of these ceremonies. You also had one if you became engaged. You would keep it a huge secret, give your closest sister a candle and your confidence. She would call for a candle lighting and everyone would gather in a circle to pass the lit candle, wondering who was the lucky sister who had a boy who had professed his love. When the sister in question blew out the candle at the appropriate time, everyone would scream and squee and hug. I had such an engagement candle lighting.

As an alumna, I witnessed "adult" candle lightings. These were for marriages, new houses, new jobs, and pregnancies. For those bitter, nasty three years, I hated pregnancy candle lightings. I would stand in the circle, quietly chanting Marriage. Let it be a marriage candle. Pleaseohpleaseohpleaseohplease. And, inevitably, the candle would be passed for a pregnancy, and I would force a smile, and hug the sister in question, and wait until after the meeting was over and I was in my car on the way home to cry and shout and weep for something I was convinced would never happen for me.

By 2004, I was still bitter and decided that we were going to adopt. We were in the beginning stages of the adoption paperwork when I attended yet another sorority alumnae meeting and watched yet another white candle make its appearance. Without even making an excuse, I practically ran to the bathroom and didn't come out until it was all over. I didn't congratulate Lisa, the sister in question, on her pregnancy (her first) and I left with a nasty scowl on my face. I vowed, right then and there, to NEVER have a sorority candle lighting when our adoption went through.

By July, 2005, Lisa had her sweet baby girl and I, ironically, was waiting for the birth of my twins. One month later, on bedrest, I read the sad news that baby Ainsley had been diagnosed with Complex I OXPHOS mitochondrial disease, a degenerative disease with no cure and no hope. Only an attempt to keep Ainsley's quality of life as high as possible.

For six years, I have quietly read Ainsley's CarePage updates. While my twins, just two months younger, jumped and skipped and developed normally, I read about Ainsley's struggles to eat, walk, sleep, and live without pain or discomfort or seizures. Many times, I wept. This morning, I opened another CarePage update only to find that Ainsley had passed after another surgery to improve her quality of life.

Ainsley now has her wings.

I never did have a candle lighting. I told my sister, Sara, that at no time would a lit candle come near me at a sorority meeting. I announced my pregnancy via email and left it at that. I didn't want to upset any other sisters who may be going through infertility and suffering the same bitterness as I had.

But today, I will have that candle lighting. I will light a candle for Ainsley and thank her for her six years and apologize for my animosity that had no place in her mother's celebration of Ainsley's existence.

If any of you would like to do so, please feel free to make a donation to the Children's Healthcare of Atlanta Foundation. CHOA helped Ainsley and her family during these last six years and without them, Ainsley would not have had a fighting chance. I also invite all of you to light a candle today for Ainsley.

Thanks for reading.


Megan said...

Don't be too hard on yourself. Your pain was yours, and it's hard to see past it sometimes. That's OK. I went through similar things when I had my miscarriage and after Mack was diagnosed with CP.

I hope Ainsley is free and happy now.

sybil law said...

So, so sad, but now Ainsley is pain free and surely has wings! I can't imagine how much pain her parents are feeling right now.
Light that candle, and forgive yourself for not being happier for her mom those years ago. You've raised this person's awareness about Complex/ OXPHOS mitochondrial disease, and that's definitely a good thing.

hello haha narf said...

rest in peace, dear ainsley.

Michael from dadcation.com said...

This might be the saddest thing I've read on a blog. I guess I'm glad the poor little girl isn't in pain any more, but still...I'm glad her folks will get to see her again one day, and that she'll be healthy.