Wednesday, June 27, 2012

Mixed Feelings

Sadie on her first visit to
the new Lurie Children's Hospital
Last week was the two year anniversary of Sadie's Aicardi Syndrome diagnosis. Last year, I wrote a blog post about what happened that day and our feelings after we heard the diagnosis. This year, as the anniversary came and went, I found myself having many mixed feelings.

I feel sad as I think about her diagnosis day, but grateful that her diagnosis has taught us what is really important in life.

Anxious about her upcoming swallow study. (As mentioned in a previous post, her May study showed that she aspirated liquid. Since then, she has received all liquid feedings through her NG tube. Sadie will repeat the study in August and based on the results, she may need to get a G-Tube.)

Scared that she might fail this swallow study. Scared that she might pass this swallow study.

Upset as she has been having really intense seizures lately that scare her and cause her to cry. Disheartened that Sadie's current seizure medicines aren't working as well as we'd like.

Hopeful as we start a new seizure medicine this week. (On Thursday, we will start a new medicine called Zonisimide (Zonegran). This medicine has been recommended by a few doctors who have evaluated Sadie. Additionally, it seems to have yielded positive results with other Aicardi girls.)

Sad as dear friends, a fellow Aicardi family, relocate from Chicago to New York at the end of the month. Grateful that this diagnosis has brought them into our lives.

Pi**ed as I flip the TV channels and hear the announcer on TLC's "I Didn't Know I Was Pregnant" say, "...even without any prenatal care, the baby came out completely healthy." (I resist the urge to throw a shoe at the TV.)

Sad (again) as I hear of another Chicago-area family who recently received an Aicardi Syndrome diagnosis for their newborn daughter.

Happy, thankful and amazed at the generous, kindhearted people we continue to meet through our new church community.

Envious of the old colleague I met for lunch last week who has a fabulous new job. Yearning to be back in the career field. At the same time, grateful not to have the stresses that go along with juggling work responsibilities.

Blessed and thankful that I am able to stay at home to care for Sadie.

Amazed at how much equipment costs, especially when you put the words "special needs" in front of the description - as we finalize our purchase of Sadie's special needs swing for our backyard and a special needs jogging stroller.

And finally...HOPE that things WILL eventually get better.


  1. We are so grateful for the McCanns! This experience wouldn't be the same without having someone like you to ride the emotional rollercoaster with! Love you guys---Polly