Wednesday, April 9, 2014

This and That

How's ya life?

Right. Jumping in. There's this trend around here lately, and maybe elsewhere, I'm not sure, where all the birthday invitations Gianna has received say "in lieu of gifts, please bring a canned food item/blanket/book/etc to be donated" and

I plan to copy cat that for the rest of ever. Not only do I think this is great for cultivating charity, it's also nice to prevent the exchange of random stuff without feeling like a jerk for not bringing a gift. Spread the word.

 Gianna's school held a benefit concert where I heard a new song by a group called the Pawn Shop Kings and I canNOT stop playing it.

More videos! PiaBaby is finally bipedal, praise the Lord. Although she is reluctant to use walking as her primary mode of travel when on the first floor of our house. I can't blame her, lots of tile and hardwood and the vintage nature of the construction of things render the floors pretty uneven in spots. But. I feel like she has turned a corner, and her protective reflexes are really solid...she actually puts her hands out to catch herself, and often manages to fall on her knees and not her face. We might dodge a call to CPS after all. She is coming up on 21 months...definitely within the typical time frame for kids with Usher 1, and just a few weeks behind when Gianna started walking.

Gianna is taking guitar lessons which means that I, also, am taking guitar lessons. Mr Gillum, the teacher, asked if I played and I laughed out loud. I used to get kicked out orchestra class for talking too much, and all I have to show for my time there is a busted viola. Gianna is really enjoying it and it's fun to see her take an interest in something and work at it. I can't help watching her in class and musing about how her cochlear implants and her ability to use them to hear and speak are what allow her to be sitting there, learning to play a G chord and laughing at the antics of a fellow student.  I'm really, really, grateful she's been given this opportunity.

Which leads me sister. She has been training to run in the Flying Pig half-marathon here in Cincinnati to raise funds for Gianna's old school, Ohio Valley Voices. Pia will begin attending there in January. I can state pretty confidently that without OVV, it is unlikely that Gianna would be in guitar class or attending a private Catholic school without an interpreter. If I can get some organizacion up in here, I hope to write a longer post detailing our decision to switch to Ohio Valley Voices and why we are so thankful that we did. In the mean time, if you would like to show support for Ohio Valley Voices in a monetary fashion you can do so here. I think. I hope that is the right link. Thanks!

Lastly, Gianna had a check up with the retinal specialist who had officially diagnosed her with the early stages of retinitis pigmentosa back in October. This specialist was in agreement with the one we saw in Boston that for Gianna's age and disease type everything looks more mild than they would expect at this point. Praise God. Thank you for your prayers for us!!

Thursday, February 20, 2014

No Turning Back

I recently came across an old journal spanning the time when Gianna was first diagnosed with hearing loss up through her cochlear implant surgery nearly a year and a half later. Skimming those pages was slightly painful and embarrassing. What a dark place I was in. What a dark place I can so easily find my way back to. What can keep me from going back to that place?

Oh Lord, you will lead me in the valley of the shadow. Grab my hands, Oh Lord, so they might only cling to you. Take me by the shoulders and guide me so that I might stay in the lighted path. Direct my gaze, Oh Lord, so that I might see the blessings that surround me.

While cleaning the other day, I found a packet of pictures from our first year of marriage. In one of them I'm close to 20 weeks along with Gianna, it's Thanksgiving, and I'm proudly holding out my first-ever attempts at home made apple pie. My hair looks recently trimmed and is sleek and smooth. I must have had the time to fix it. My skin and eyes glow with expectation and well-restedness. To my now-wizened outlook I appear so young and fresh-faced I can't believe anyone let me get married, let alone have a baby.

"That person has no idea," I told Brad as I held the picture out to him. She has no idea she'll have to learn a new language and angst over chromosomes and retinas. She has no idea that people have cochleas and vestibular systems. She has no idea she'll be one day balancing the boisterous energy of a little boy with the unique needs of two very special little girls.

Gianna took a bad spill walking across our kitchen a couple of days ago. She tripped over one of Pia's push toys and when she tried to steady herself on it the wheels rolled out from under her and she slammed face-first into our tile floor. What would likely have been a mere stumble for a typical kid turned out very dangerous for her. Fortuitously, my cousin and his wife were visiting us the next day; Dana is a doctor and was able to take a look at it; she thought maybe it wasn't broken but even if it was, Gianna was breathing fine and not bleeding a lot so there would be nothing to "do" for it.

That evening I lay in bed worrying. Pia is 19 months old and not walking. Strangers are starting to comment on her size and age and asking with wrinkled brows, "She's not walking yet??" I've been pining for her to walk but now I'm scared. So many more falls in our future for my vestibularly-challanged girls. I felt tired and sad just thinking about it.

I thought of that girl in the picture, my younger, more innocent self and I'll confess to a moment of pure, unadulterated yearning. I wanted to go back there. I wanted to be in a place where the only weight I felt was the warmth of homemade pies, fresh from the oven.

The only thing is, that girl hadn't really loved yet. She hadn't walked through fire to pull her baby girl, soft and wet, to her chest. She hadn't had her first big fight with her husband or sat nervously in a hospital waiting room with him. She hadn't had a small, trusting hand nestled into her own or nuzzled the top of a toddler's head in a rare moment of stillness. She hadn't yet begun to learn the art of being grateful for each and every thing.

Would I really go back if I could? I am a different person now, with a different life, but it's because of love. Love changes you. This love that I choose to act upon, every day, brings me life. A life that has been filled to the brim with opportunities to give more, love more, change more, and discover, sometimes in spite of myself, true joy. No. I'm not going back.

 "My cup overflows. Surely your goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever"
Psalm 23