This may be a bit premature since author Q&A's usually happen after a book has been written, this just being the beginning of my writing since my muse Lyla entered this world. But I've been getting a lot of common questions lately from our inquisitive supportive network, and I wanted to share the answers with all as an introduction to Chapter 1. (And it's just a metaphor friends - there is no book...yet).Speaking of sharing. That's the first eyebrow-raising concern for many - How are you comfortable sharing your life like an open book with so many people, sometimes strangers?
Some people keep to themselves in their private homes with the blinds closed for no one to see, and some people love things like Facebook to constantly broadcast to their peeps that they thought the season finale of Grey's Anatomy was simply epic...which it was. I think we all know that I fall into the second category of shouting from the rooftops what my day was like and here are the fun pictures to illustrate it. There's just something about letting everyone hear my opinionated voice...and of course keeping long distance Nana updated on Lyla pictures as Sue is counting down the days until she can reunite with her granddaughter's delicate face since visiting week 1 (4th of July in WNY and we cannot wait!). I decided to take my public life stance and turn it into a unique view on Lyla's world for everyone to see. Hey, why not? (She told me she's just like her mama and can't wait to use Facebook, so we've got the thumbs up from her too.) I decided to educate others on what this new beautiful life means. How lucky am I that I get to live in it?!
Now let's do some educating. What does Down Syndrome even mean?
I cant even tell you how many times Troy & I asked this question those first few lost days. But the answer is pretty simple actually. It all comes down to 1 extra chromosome in her body. That's it. In those early days of fertilization, the genes of who makes us who are found in all cells' nucleus. In the nucleus are 23 pairs of chromosomes- half from mom, half from dad. This initial cell had half of Jessica's loving round face and half of Troy's gorgeous...shoot, sorry Troy, she's all me....but there was an error on chromosome 21. Either the sperm or the egg carried over two chromosome 21's instead of one. So as Lyla was cruising down my fallopian tube, cells progressively splitting, every new cell in the body was being given this extra chromosome.
Ok, so what could a tiny extra chromosome do? Actually, it can do a lot. The additional genetic material alters the course of development and causes some different physical features. She will reach all of the milestones that a child without Downs does, but just at a slower pace. Walking around with mama chasing her runaway baby will more than likely be around 2 years old instead of 1. Talking up and down about how Elmo is God will maybe be around 3 years instead of 1.5. I know, it's hard to imagine a 2 year old not talking. But, she'll just get to be my baby a little bit longer.The hardest part to this simplistic answer is the increase in medical problems that Down syndrome brings on. Heart defects, intestinal problems, leukemia, sleep apnea, ear tubes, epilepsy, respiratory infections, and vision problems are all to be watched for in the first year. I know, hard to read. You can imagine my thoughts of Are you freaking kidding me? as I dove into the page-ending pamphlets those first few days at home. I won't even get into the minor things that we get to be mildly paranoid about. But they're nothing compared to the pleads to God to keep leukemia away. Most of you know she didn't escape the first on the list though- a heart defect that will be repaired in her first year, most likely before winter. It's a defect called ASD - atrial septal defect. Best advice- Google it. That little stubborn hole will be filled up by the wonderful doctors that we have met at Childrens Hospital - the meca of all hospitals to take the best care of my baby. It's a one-and-done operation, and then she can get back to ruining outfits mama dresses her up in with explosive diapers right before we're about to walk out the door.
Then there's the question we hear from the doctors all of the time to make sure we're staying sane parents and not entering the nuthouse...How are you feeling?
The timeline of emotions went a little something like this - Birth: Shock, confused, lost. Recovery room: Sad, guilt, fearful. Coming home: Eyes hurt from reading too much, educated, tired. First week alone: Surprised, in awe, love. First month: Protective, ambitious, energetic. Second month: Teacher, maternal, comfortable.What about your job?
Mama's time of impressing the man-infused industrial world and stepping up the corporate ladder is going to have to be set aside for a bit. I'm trading in my steel toed boots for yoga pants and a Hotsling. I know some of you can't stand the 9-5's, but I really did enjoy this new Grainger Boston team and where I was headed. Just as I was starting to turn heads here, because of course I rock, work was told I needed more than just the allowed 3 months maternity leave. I instead asked for a 1 year leave of absence to take care of my little love until that teeny chest is healed up from surgery. We'll see how much she wraps me around her strong-grasping finger before it's time to go back ;)
So sit back, and enjoy the appreciative ride that this angel is going to take us on!Chapter 1...