Thursday, December 18, 2008

What to Expect

“What to Expect When You’re Expecting”. “What to Expect the First Year.” The necessary manuals for all moms on a mission. When my first son was born, I read each manual thoroughly comparing the progress of my pregnancy with the milestones in the book, delighting in the textbook perfection of it. The book said morning sickness would end after the first trimester. Sure enough, mine ended as I finished my 3rd month of pregnancy. Things continued perfectly forward to a perfect birth, and I was rewarded with a perfect son.
Each month, I checked off the milestones he’d achieved at the start of each chapter noting how remarkably advanced he was. When we ran into obstacles, difficulty falling asleep, fevers, the terrible twos, the answers could be found in the manual.
I was a mom on a mission; on a mission to do my very best at every step along the way for my son. The manuals were my guides to the perfect execution of my mission. Other moms were readily available to share and compare as we all traipsed along happily raising our children.
Then came my second pregnancy. Another chance at perfection. But this time, things didn’t go by the book. Various discomforts plagued me and things didn’t feel quite right although my doctor couldn’t identify anything unusual. This birth was difficult and complicated. From the moment she arrived, it was obvious that something was definitely not quite right with our daughter.
I lay awake the first night of my baby girl’s life, alone after the rest of the family had gone home for some much needed sleep. I couldn’t sleep. Down the hall, my baby girl howled as doctors tried again and again to get an IV into her tiny newborn veins. Finally, success was achieved in a vein in her scalp.
This time, the manuals would be useless. No books held the answers to a baby who couldn’t suck, may not be able to hear, perhaps couldn’t see, and didn’t like to be held. If I thought I had a mission before, it was nothing compared to this one. The difference between traveling by car across the United States and by space shuttle to the furthest limits of the universe. There would be little to share and compare with the other moms who had become my comrades in child rearing thus far.
Fortunately, we were given a diagnosis quite early. CHARGE syndrome. An explanation for the problems we were facing. A connection with other families worldwide facing the same mission. A connection to professionals studying the related issues. And an actual manual from the CHARGE Syndrome Foundation.
A mom on a mission with two different children going different directions requiring different sets of manuals on two simultaneous missions: one across the country with a million other drivers and one to the outer limits with a few fellow travelers.

3 comments:

Amélie said...

Michele

Just stumbled across this site and its great...easy to relate to and catch up with you all.

Hugs to Aubrie and all the family.

hugs Les and Amélie xx

Anonymous said...

Hi Michele,

I found your site from Nancy S. who recommended it. Looking forward to reading more from you!

Amélie said...

Happy Christmas to you all and a healthy & peaceful New Year love the Channies xxxx