Monday, March 06, 2006

My tale of woe

I survived. My husband survived. And Fric and Frac, well I believe they just got started!

The sledding/birthday party was a success. And by success, I mean there was no carpet of red on my pretty white hill, no broken bones, and only the smallest amounts of arguing over who got to use the inner tube next.

So, a success.

There were dark spots to the day though. As I was huffing my way up the hill, hauling yet another toddler back up, I was struck by how this should have been Shalebug in my arms. Then there was the moment inside, with the cake and icecream, and the chorus of "Happy Birthdays!" and all I could think was there are no more wax candles for my kiddy.

But the hardest part of the day was realizing no matter how hard my Hubs and I tried, we failed. Shalebug died. And the sobering realization that some parents just don't try as hard as we did, do, and they will never face what we faced. And life is just a pile of sucky-it's-not-fair-shit.

You see, Shalebug was different. Right from pregnancy. And while my doctor kept insisting that I was having a normal pregnancy, my husband and I knew differently. How we prayed we were wrong. But the moment he was born the room went still. The doctor and nurses clammed up and wouldn't say a thing. And my husband leaked tears while giving me anxious looks.

The Bug was purple. His feet twisted backwards and darned near touched his butt. And he was quiet. They worked on him to clear his airway from mucous, to help him breathe, but that beautiful baby cry was not heard until months and months later.

After allowing me only to kiss the top of his head, they whisked him away. I asked my Hubs if he did indeed, have clubbed feet. Hubs said yes and then chased after the baby, because I needed to know what the heck was going on. It was in that moment that I knew my life had forever altered. No matter what happened, I knew I was never going to be the same. Yet stupid me, I felt the worse thing in the world was to have a child with club feet. I even joked, "at least he doesn't have a cleft palate!" I was so ignorant.

Two hours later, my Hubs and the docs came down to talk with me. Shalebug had bilateral clubfeet, facial abnormalities indicative of a palsy or somesort of syndrome, an instable airway, a bad ultrasound of his heart, and oh yeah, a cleft palate. They were transferring him by air ambulance to the best neonatal hospital in western Canada, the Stollery Children's hospital.

I was devastated. I sent my mother and my hubs to be with the baby so I was left alone to be devastated. But I couldn't handle the thought of my baby being away from me. All alone. (See a pattern here?) Hours later, from the Stollery, my husband phoned to report good news. His heart is fine. However, there seems to be a problem with his brain.

And so the saga began. I discharged myself against sound medical advice, and joined the Bug in his new home. Where we stayed for the next four months. And visited weekly for the next year. And then monthly until the date of his death. The hospital where they diagnosed him with multiple syndromes*. The place where he had countless operations, and procedures through the years. The place where I made friends for life and learned a whole new attitude. The place where I introduced myself to God. And the very place where I brought him in one final time. Seemed fitting in a weird way. I entered the Stollery the first time without him, and I left the last time the way I came in - without him.

But getting back to my sledding story, through all of this, my Hubs and I faced challenges that no other member of our family ever (and I hope Never) had to. And I fought like a damned wildcat to get both my family and his family to accept our little Bug. I never, not once, never not included him because of his differences. I pushed (and fought) to make sure every family activity would be inclusive to Shalebug. And my hubs and I fought to give him the best damn life he could have.

Which is why it fu^*ing sucks that he is gone. Because there are parents out there who don't try half as hard as we did with their healthy kids. And nothing bad ever seems to happen to them. I am still angry. I thought I wasn't. But I just want to scream at anyone who will listen "Why does it seem like God is picking on us?"

*Medical mystery will soon be revealed. Just drying my eyes. Don't want to short out the keyboard.