Tuesday, February 14, 2012

life worthy of love

Note: Today's post and - to a greater degree - tomorrow's will give some details about what Zoe Amanda's special needs are expected to be. While many of you have asked questions and I do want to answer them with transparency, I am taking a risk by posting about this so early in the adoption process. You see, cerebral palsy is something that Zoe Amanda has, not what she is. We want you to love and care for our baby girl as a person, not as a label. In most cases, you'd see pictures of a child and meet her before learning of a diagnosis, but we can't yet share pictures publicly and we haven't even met her. Information in the absence of a baby in our arms could have a dehumanizing effect, and we certainly don't want that.

Lee's approach to this? He just tells people we're adopting and doesn't mention special needs. His take is that everyone will figure it out eventually and he wants people to remember her name and not her disability. Me? Well, I'm sure it doesn't surprise you that I like to learn and offer as much information as possible. 

So read on, but as you learn about the special needs Zoe Amanda has been diagnosed with, please think of her as a kid first and foremost. If you think that might be a struggle for you, then just skip this post and tomorrow's and pick back up with us on Thursday or Friday. 

Thanks.
~+~

I’ve started a baby registry (one on Target, and another at my obsession Amazon), not so much for gifts but rather to help us keep track of what we do and don’t have for Zoe Amanda and what we need/want/desire. It’s helped in an unexpected way:

It has helped me wrap my mind around the realities of becoming a mom to a child with special needs.

I think we registered for a little kid potty for Jocelyn. When I saw those this time around, I realized that I don’t know if Zoe Amanda will ever be potty trained or not.

I considered strollers as something we’d use for a short period with our two oldest, and I considered pricey strollers with high weight limits to be an unnecessary and somewhat impractical luxury. Now I’m looking at brands I would have scoffed at before, considering what stroller might work well as Zoe Amanda grows. We don’t know for sure that she’ll need a wheelchair, but – considering that’s a good possibility – a stroller that can work well for a longer period as a pre-wheelchair option is a wise investment. (Side note: Anyone have a used fancy schmancy one – with life left in it, of course – in need of a new home? If so, we’d love our home to be its next stop!)

When Robbie and Jocelyn were babies, I tried to gauge what type of shoes to get them in each size, guessing when they would need “pre-walker,” “toddler,” and “walker” shoes. Zoe Amanda might never walk. Or she might use a walker. Or the braces she might need could work better with some shoes than others.

For everything we know, we realize how much we still don’t know.

I’m not anxious or sad or upset by any of this. Most parents of kids with special needs have to set aside their old dreams and dream new ones for their child. For us, we found out about Zoe Amanda and her cerebral palsy at the same time. It’s not what defines her, but to us it’s always been one characteristic that she happens to have.

People with CP have higher odds of other conditions – like epilepsy and autism – so we may experience unexpected diagnoses in the future… but we could experience that with Robbie or Jocelyn too. Regardless of labels and disability and all that, we will have a sweet reminder every time we say her name. 

Zoe Amanda

Zoe means “life,” and Amanda means “worthy of love.” Her name explains who she is, why we were called to adopt her, and what God has taught us in His word about disability and orphans. Hers is a life worthy of love. Christ declared that when He lived the sinless life we couldn't, died on the cross we deserved, and defeated death by his resurrection. For me. And you. And Lee and Robbie and Jocelyn. And Zoe Amanda.

In her name's meaning, we’re merely affirming what He already declared to be true.

Zoe Amanda, we have no idea what God has in store for you, but we look forward to finding out.

many thanks to Heather for taking this shot at church on Sunday
and to her husband and youngest daughter for goofing off behind her to elicit the smiles on the kids' faces


P.S. - If you'd like to know you can support us during this process, here are a couple posts about that: {part 1: financial support} and {part 2: PRAYER!}

Thanks, y'all.

4 comments:

  1. Shannon, so happy for you and your family. What a blessing you will be for little Zoe. I'll be praying! Love, LuAnne

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    1. LuAnne, thanks so much! I love how FB lets me keep up with all that going on with you. :)

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  2. Oh, friend. I started to cry when I got to her name's meaning. I'm so thankful that all of us have a life worthy of love because we are created in God's image, and Miss Zoe is no different!

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