I realize I've already posted for today...I'm posting this before I lose the nerve and delete it.
I've spent the month of October blogging every day for "31 for 21" to raise awareness for Down syndrome. I have so enjoyed reading other mommys' blogs during this month. And it seems to me that at the beginning of the month some of us were a little hesitant to write about our true feelings...but as the days moved on, we began loosening up and feeling more comfortable in our "advocate" rolls...and being truer in our blogging.
This doesn't mean we weren't honest before. But I think we all weigh what we say on our blogs because they are public, and we don't want to ...
a) offend any friends or family who read our honesty and then realize maybe things have been said to us that were unintentionally hurtful.
b)scare off other mamas who might be facing a ds diagnosis and are coming here to "see what it's like". God forbid I would ever be the reason for someone choosing to terminate a pregnancy because they see my grief and think, "I can't handle that."
c) appear bitter. Because some of the things I feel.. look a whole lot like bitterness to those who have never walked this way. And maybe...partly....they might be. But that doesn't mean I don't recognize my feelings and desire to change. It just means I'm still in the process of wading through this Down syndrome thing- the emotions, the realizations, etc. and I'm not going to do it all perfectly. I'm human. And sometimes I really struggle to allow others to see me as such.
e) and finally...maybe some mamas are like me in that- we struggle to be real in our grief.
Grief is a process, and for a lot of us that process isn't really totally over yet. Acknowledging we're grieving can be misconstrued as self-pity. OR it can solicit pity from well meaning readers...which is the last thing we want. And we certainly don't want people telling us to count our blessings or just love our babies- because the truth of the matter is our children and our love for them are the whole reason we are grieving. If I didn't love you so much, Lily, I wouldn't grieve the fact that you are going to struggle in life. And face rejection at times. And have a disadvantage in life. That has ABSOLUTELY NOTHING to do with the fact that I am completely 100% head-over-heels in love with you, and consider you to be my greatest blessing in life!
SOOOOOO, what I am about to say may appear to some readers to be self-pity. or bitterness. or discontentment. I assure you, Lily- it is not. It is the struggling-through-but-I-will-overcome-these-feelings kind of writing that is therapeutic for me, and I'm putting it out there in the hopes that it helps other Mamas of babies and children with ds to feel...normal.
(and thank you, Deanna and Jenny, for being so real on your blogs and inspiring this post.)
I have learned since having you, that I really struggle with being sensitive. Really struggle.
A relative comes to visit and doesn't ask to hold you, or ask about you, or pay attention to you. I wonder...is it because you have Down syndrome?
A relative comes to town and does pay attention to you and asks "How is she doing?" and I think...is it because you have Down syndrome? Would they normally ask that question...that way?
Someone comments on how tiny you are and I say yes, it is related to Down syndrome. They say "Ooooh" in a sad way...and I think...should I have told them she had Down syndrome? Or just said yes, she's tiny.
I see other babies your age doing so much more...even today, Mackenzie is babysitting a baby younger than you in our home...and I have to fight an urge to ignore that baby. I don't like comparing, but my brain is going there again and again and I hate that I feel this ...anger...towards other babies. I hate it.
I take you shopping or to the doctor or to a pumpkin patch...people stare at you and smile, and I wonder...are they noticing you have Down syndrome? Are they smiling because you're so sweet, or is it out of pity?
Again, someone - a stranger- asks me if you were premature, because of your size. I hesitate, say "a little premature", finally offer the answer: Down syndrome. "Oh, I could tell," they say proudly. And I want to end the conversation there.
An older woman at the hospital comments on how beautiful you are, how alert, etc. She keeps asking about your size, until finally I smile and say confidently, "Yes, she has Down syndrome." The woman says "Oh." And goes back to reading her magazine. The same scene repeats itself several times..in the waiting room at the Audiologist, at a restaurant, the doctor's office. Always with the older generation- the ones who were used to seeing babies like you put away in institutions or separate classrooms. I find myself leery of telling any more people from that generation about your diagnosis.
I hear about a potential ds diagnosis on an ultrasound for someone else...hear how relieved everybody was that the baby was "totally perfect." And later I bemoan the fact that I wasn't strong enough to tell the story-teller, "We think Lily is perfect too." I'm mad at that person, even more angry at myself. I tell my husband- why didn't you say something? He says he didn't even feel hurt by the words...and I fight resentment at his lack of my shared sensitivity.
I told you my feelings might appear less-than-saintly, Lily.
And so what do I do? Bitterness and envy and hatred and resentment and unforgiveness are loads too hard to bear. I can't hold onto them and walk this road we're on together. There are too many other things to carry.
Daddy tells me to look at it this way: I have emotional cash. And there is only so much in my account. I can't spend it all- I'll come up hurt and empty every time. I need to be careful what I give my mind to- what I let penetrate my heart. When those feelings of hurt and anger and ugliness creep in- when I want to isolate and shelter you and hole up in our safe little home, never to face the unintentional or intentional...jabs from strangers- or even loved ones- again...I need to stop.
I need to move on, realize that maybe I didn't see things right, maybe they didn't mean things that way, maybe....
Maybe I just need to quit being so oversensitive.
Life's too short.
You need a Mama who has "the heart of a child and the hide of a rhinoceros." I want to be sensitive to others, but not overly sensitive myself. I want to quit being thin-skinned.
And truthfully, Lily- I can't do this on my own. It's such a part of who I am, and old habits are hard to break. I need God's help. Desperately.
So I am praying. And checking my heart. Daily.
And maybe it's all part of God's big royal plan in giving me you. Because you know what? These are good life lessons for me in every area. People would say things that hurt my feelings even if I didn't have a baby with Down syndrome. And I need to grow and change and toughen up a little. And realize that people are flawed and human ... just like me.
So you see why writing is therapeutic, Lily? I just blogged my way right through that little...okay huge...bump in the road.
We're gonna be fine, baby girl.