Sep 7, 2010

So ill-equipped!

There are days like yesterday that I feel so ill-equipped.  Some days I zip through things and feel like, "Why isn't a film crew following me?"  I feel like I should earn Mother of the Year!  (OK, honestly those are rare, but they do happen.) 

But days like yesterday ... ugh.  And it's 24 hours later and I just now feel like I have processed it enough to talk about it. 

Background ... Zoe is 5.  She was born in China with a cleft lip and palate.  Wonderful people in China gave her surgeries and put her in an amazing foster home.  She was (relatively) well loved and cared for.  When we got pictures of her, I noticed other symptoms that were not a part of the cleft lip/palate.  I researched and found this rare condition - Hemifacial Microsomia/Goldenhar Syndrome.  I just knew this is what she had. 

I kept it in my heart only though ... I worried they might not let her out if they knew the full extent of her condition and we loved her. 

The day I met her, one of the first things I did was look in her eyes.  I knew that one of the tell-tale signs that could confirm this diagnosis was cysts in one or both eyes.  I tried not to cry as I saw them in both eyes. 

Weeks later we saw her craniofacial team here and they told me they suspected HMF/GS and I was like, "I know."  She is considered moderate to severe.  We are blessed beyond belief with the team here. 

She has had numerous operations and many, many more to come.  And up until now, we've only done things to help preserve her sight, hearing, swallowing, chewing, etc.  Nothing about the shape of her face. 

It's something we don't even talk about.  I "forget" she has this.  To me, she's just Zoe.  I don't see a condition, I see my sweetie pie. 

So now that you're caught up ... back to yesterday. 

I was sitting on the bed dressing Manny for the day.  Zoe was staring at herself in the full length mirror in the room.  (Not something I've ever seen her do.)  And she says, "Why does my nose look like this?"  I calmly said, "Because of the cleft lip and palate, remember?"  and she mumbles under her breath, "I HATE cleft lip." 
"Honey, I think you look great."  She wasn't buying it, for the first time. 

I called her over and we had a discussion on the bed.  It was only about 15 minutes but it seemed like a lifetime as I approached very difficult, sensitive topics.  I didn't want to downplay it or overemphasize it.  I was praying for the right words to help shape her proper identity. 

By the end we had discussed the plans to have more surgeries to give her a bone here and there, give her teeth, extend her jaw, etc.  Up until this conversation, she had ALWAYS said, "NO surgery!  It hurts."  But this time, she was asking how quickly we could get it all done.  She wants "the works".  As I walked her through every proposed surgery, she was like, "Yes!"  Even the Pharyngeal Flap surgery I've been avoiding so she can possibly talk clearer. 

I told her that up until now we have made all the decisions about her but that as she ages SHE will have some say in what surgeries we do/don't do.  I reassured her that I love her face no matter what we choose. 

I can only assume that this was spurred on by something said at school.  (sigh) 

I do not have a facial abnormality that progressively worsens with time.  So I cannot imagine what it is like.  I can only present the support along the way. 

I hope I gave her what she needs.  Time will tell. 

1 comment:

  1. Oh, my heart tries to prepare for such moments. As always you handled it with a beautiful combination of love and grace. I want to protect my girls from a world who doesn't see them the way i see them. But I know I can't do that forever.