Humble Pie

I have been humbled today. Humbled in the way one is when you know you are in the presence of greatness.

I have spent days writing the whiniest of whiney posts. An entry trying to describe the post traumatic stress and aftershocks of bearing two children with birth defects (though I disagree on many levels that Trisomy 21 is a birth defect, I must acknowledge that medically it most certainly is considered to be one); of having my only two children hospitalized at birth defying the oft used cliche "Lightening only strikes once" and proving it to be, in our case, a misnomer really. My recent entry on Postcards from Holland was my first attempt to describe the emotions I have only just let myself explore, and while it was cathartic, I knew the moment I hit the publish button that I would be revisiting the bittersweet taste of this cocktail of gratitude and anger, garnished with both my love and disappointment.

So, today as I logged onto my newest support forum, one dedicated to "Heart Moms" and one which makes me feel as though I collect labels like others collect jewelry, I read about some children whose recoveries from open heart surgeries were not going as well as they could. I realized again but with newfound vigor, just how fortunate we have been with Gabe. I realized just how lucky it was that I didn't know about the vast array of complications a heart defect can cause or that can arise following surgery. I realized how lucky it was that the intensity of Gabe's birth and hospitalization, punctuated by a Percocet dream, left me in a such a haze I couldn't even contemplate researching what we were going through, or what the future could hold.

That was the first piece of Humble Pie I ate this morning.

As I continued on my luxurious cyber surf while the baby slept quietly next to his father, who sleeps not so quietly at all (which has earned him the moniker of "Sir Snores A lot"), and Miss Emma Jayne was just waking up from her traditional Friday night slumber at Pinko Grammy's house, I stumbled upon the words of another mother whose child has Down syndrome. Not just another mother, but a mother of one of those SuperStars that I once was so envious of. Yet another one of those children who can match colors, have an extensive spoken vocabulary, known their ABCs, can count, have complex imagination routines and are probably ready to drive a car by the time they are 3 or so. Once I used to covet their children's milestones, and sometimes I still do, but for the most part all I have to do is see Miss Emma Jayne smile and I remember that she too is a SuperStar in her own right. She is my SupaStar, and as far as I am concerned, that is the best kind to be.

But I digress.

The problem I now run into with these mothers is so often I hear pity in their pride; pity for those that aren't "doing as well" as their children or for those that are "worse off" than their own. I feel the ugly head of comparison raise it's neck and it makes me crabby. It makes me crabby because I don't think Emma is worse off than anybody, regardless of her delays, conversely nor do I think she is better off for her successes. When I encounter these situations I never know how to handle myself because I know just how defensive I am about my daughter's development(which is my problem) and I do want all parents to feel comfortable demonstrating their pride. I also think it is very important for the parents of those children whom are consistently performing at age appropriate or older levels to tell the world about their little stars so, if nothing else, the world can learn to appreciate the individuality inherent in an extra chromosome. In a perfect world, maybe some of that pride would be tempered with the tiniest bit of sensitivity; with the realization that the children who are not developing as quickly as some others are not "worse off", but are just developing slower. Let's not make slow a bad word, shall we? But this isn't a perfect world is it? I am left to wonder, considering my own emotional baggage and lightweight skin concerning the entire topic, should I try to make what is essentially my own problem somebody else's? Am I even perceiving the situation correctly or am I inferring pity that was never implied? Maybe I just need to suck it up and step outside of my own box.

All I know for sure is that those phrases help me find my grumpy side and leave me shouting at inantimate objects "Emma is doing fine. Just fine". Not a pretty picture. At the same time it makes me realize how lucky I am to be able to be concerned with Emma's development. There are parents out there who wish they could concentrate on that, but are too busy trying to provide food, clothing, shelter, safety or life for their children.

That was my second piece of humble pie today.

Then, as I continued on my cyber cruise, I happened upon true greatness. A woman whose words made my body tingle all over in the way only a superb writer can; a feeling that can only be evoked by a beautiful description of a heartwrenching experience. I strongly encourage you to visit Dream Mom, a blog that is no longer active, but one that is of the highest caliber and written with the eloquence, class, and passion of an old soul. She is whom I want to be when I grow up.

As I glimpsed the moments of her life that she has frozen in time, I sat awestruck at my computer. Awestruck by the beauty inherent in those moments and in her life with Dear Son, and awestruck by the intensity of her life experience.

That, blogland, that was when I threw my fork aside and shoved my entire face in the pie pan. I devoured that humble pie.

Reading Dream Mom's entry Don't Hate Me Because I'm Beautiful also made me realize that maybe my family hasn't been victimized by circumstance; maybe it was only fair that both of my children were born with these two oft described defects. Afterall the yin and yang of life bespeaks of a very delicate balance in nature, one inwhich you can't have everything. With faces like these:



Well, maybe, just maybe, it was only fair that they both were born with congenitial anomolies. With kids as gorgeous as mine are (if I don't say so myself), maybe if they both had the typical amount of chromosomes and healthy hearts, well maybe they would have been too perfect. Maybe their births would have thrown the whole balance of the universe out of whack and caused some horrific castostrophic cosmic event which would result in a gigantic tear in the time space continuim or the rapid de-evolution of humanity. Maybe, just maybe, those two crisis births saved the world.

Prove they didn't.