Complexify is a real word. It's at the top of page 118 in a book called "Difficult Conversations" by a group of smarties from the Harvard Negotiation Project. According to them "complexify" means to recognize that no one is always anything.
Tonight I am having some heartache and tears because every single day my sweet, sweet daughter has Down syndrome and I have no control and no idea what that actually means for the future. I only know what that means right now - today. Tomorrow or next year it might mean something different. This growing realization is teaching me some things about myself that are not attractive. I am proud. I'm thinking we can learn how to help her ourselves and do it without therapists. The poor kid can barely get a 10 minute break before myself or a sibling is working on physical therapy with her. Sure, I can homeschool all my children, what better inclusion program is there? Ha! I can't even get my grocery shopping done this week. Who am I kidding? I'm also recognizing pride in my attitude that if our daughter has disabilities and delays, she's going to be the cutest, smartest, highest functioning person with Down syndrome you ever met. Honestly, Urban Tangerine. Stop being so image oriented, controlling and competitive. Who am I even competing with? I just want to help Mermaid maximize her potential. But maybe...there's too much "I want" in that. "The hardest part of love is the letting go." -Stephen Schwartz. The only guarantee is that she has all our love.
I don't even know if my heartache and tears are for her. Maybe some of them are. I think this internal metamorphosis just hurts a little bit (or a lot) every now and then. I don't always feel one way. I'm so glad Mermaid is here to lay on my chest and blow happy raspberries at me while I weep and wonder. It's complex. I must complexify. Okay, she's just being way too cute right now. I'll have to complexify later.
6 comments:
I don't know which comes first: I'm so sorry or I completely get it. Thank you for sharing your learning with me. 'I want' too much, too. In my mind, I'm already comparing Mermaid and Lizard Loaf. I thought if she had Mozaic Downs, she'd have a distinct edge. Now I know better. If I can't compare my child to regular children, I compare him to his subset. It must be a process: letting go of comparisons and seeing our children just for themselves. On Sunday, I left church after Sacrament meeting to take a pregnancy nap. I should have stuck it out, but on that particular day, I couldn't bare to look at all the healthy new borns. I've been holding on to something you said before: "...sometimes I’ll say I feel one way and another time I’ll say that I feel a different way and that doesn’t mean I’m a hypocrite, it just means that I am a complex human being."
Thanks for noticing. I love you.
I know transition is difficult and this isn't a piece of cake transition like moving to a new place (as fun as that it,ha!). This is a change of heart, so it will take some time. I just wanted to share some of the hurting. I'm sure it's good-for-me hurting like when I take the stairs instead of the elevator.
Plus, I think reading the "helpful" books from the doctors are sort of opening my eyes to things I had never considered let alone anticipated and sometimes new is scary. I'll probably have to get a little educated, apply and take a break and then start the cycle again. I just can't handle it full time. How is that going for you? Do you find you need a break?
P.S. Hooray! I finally figured how to get my picture up with comments.
I find I take frequent (and long) breaks from learning about Down Syndrome. When you told me about home visits from personal trainers, I decided to see if that was a just-in-your-area thing. I downloaded this 50 page parents resource guide from the local group out East. I got through about 10 pages. That's when I hit the flow chart. It goes Diagnosis, Immediate needs, and then breaks into 3 long, detailed columns: Financial (talking about all the available insurance and medicaid programs), Intervention/Education and Medical (covering the personal trainers and specialists), and Family Concerns and other resources (talking about a variety of support groups and organizations). I haven't looked anything up for myself since then (though I've still be thrilled to read anything you've recommended). I guess I will buy the parents' guide book, but I just can't handle all of the tangible appointment details right now. Maybe we really will have to get a second vehicle next year.
What I want to research most is Baby Names! I want to buy a book, but Turtar says every name is on the internet already. Not that he's looking at them on the internet... I threatened to get a baby name book, leave it in the bathroom, and hide all his other reading materials. He said he couldn't be coerced into looking at names. He'd twiddle his thumbs first.
My Hero won't be forced into that sort of thing either, so I just talk about it with the kids and nothing is decided until we meet the little booger.
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