It's been six months and a week since I last posted. I, clearly, am not a reliable blogger!
For someone that never seems to run out of things to say, I have shirked my responsibility to update my family on my family (since this is how families communicate these day).
I think when I first started this blog, I had, hidden in the depth of my heart, a fear that Taeya would not survive her open heart surgery. The truth is, the guilt I carried for being angry with a diagnosis of Down syndrome overrode any rationale I could muster.
Once inducted into this community, you find yourself with a whole new vocabulary that, in order to keep up, you need to learn to speak. I remember the first time I heard of a campaign to end the "R" word. I didn't know what the "R" word was! The only thing I knew was, if I was going to limit my risk of loss of relationships in the midst of feeling like I was drowning in a diagnosis, I'd better not say any words that began with the letter "R" until I could figure this out.
After a week of two of pure shame at not being able to figure out the meaning, I had to ask the Physical Therapist! I think I sank even deeper into hole of dark depression when I learned.
Why? Because when I first heard the diagnosis of Down syndrome and was given 48 hours to "make up my mind what I wanted to do", the first thought that crossed my mind was, "Do you really think you can raise a child that has some level of retardation?" The "R" word, to me, is shaped like a shameful nail in a coffin.
I have learned in the past year that labels are very painful, and that is one word you just simply don't use. For me, personally, it doesn't conjure up as much of a defensiveness for my child as it maybe should. For me, it conjures of a whole heap of shame.
Never once did I consider not continuing my pregnancy. I did, however, look down at my precious Taeya when they laid her on my stomach at her birth and turned to my daughter and said, "Oh, she looks so Downs". The familiar feeling of shame is rising to the top as I write this....
Let's face it: I'm a wretch. I was so angry during my pregnancy. I did not embrace what lay before me when I walked out of the Maternal Fetal Medicine Unit. I shook my fists at the God that chose this for me. I wanted to scream every time I met someone that told me how perfect and wonderful their Ds child is. If I heard one more person tell me that they were so proud of their Ds kiddo for saying something as simple as Strawberry at age 5, I was going to jump off a cliff.
Then there were those that felt I deserved a child that would always struggle. To some, it was a judgment God put on me for everything wrong I had ever done.
And the accuser of my soul was just as near as ever in the delivery room. I felt so guilty for thinking Taeya looked like she had Down syndrome and the fact that it was my first thought.
Today, I think, so what? She does look like she has Down syndrome. She has Down syndrome. :)
When Taeya had her surgery and I first launched this blog, I was sure that God was going to strike me down and take Taeya away from me for every random, un-captive thought I had. But I've had a few lessons in the past several months. I've learned to be a little forgiving of myself for not knowing how to face this unknown. I'm not a hero that adopted a child with special needs. I'm not someone who has faced head on all our challenges and held my head up high with everything God has sent my way. I am a mom that, though I am sometimes slow to come around, is madly, crazy, head over heals in love with my daughter!
Tonight I talked to a friend who's going through some similar sufferings. She shared with me that she feels shame for how she faced the diagnosis of her Ds child, and my heart ached for her. I thought, maybe, there will be some mommy out there that will get the news of her child, before or after the birth, that her child has Down syndrome. And maybe she feels like a wretch. And maybe she's shaking her fists. And maybe she's asking "Why me?" And maybe she's a lifeline away, a little blog post away, from looking for the nearest cliff to jump off. And maybe, somehow, it'll help to know that none of us are alone in any of our shortcomings. Because the glorious truth is that we are all wretched, blind, in need of a heavy dose of grace mommies who, in time, get that Down syndrome is not a sentence; it's a gift. A gift that I simply have no words to even thank my great God for.
Down syndrome does not define our life; we help to define Down syndrome.
For my friend: Six months of fear and shame has kept me silent. Shame that I did not deal with any of this with more..... taste, wisdom, peace, grace. You are not alone in your shame, but that is not where God wants any of us to remain. I will hold you up. I will be here for you. We can get though all of this together. You are not alone. You are a wonderful mommy and God has entrusted you with more because you have been found faithful in His sight.
