Monday, November 18, 2013

Let Go

For awhile I wanted to push aside the sadness for all the dreams I thought were gone. Mostly because they were my own dreams for my girls, not the ones they will have, and it felt selfish to dwell on them. Maybe Gianna wouldn't have wanted to keep doing ballet anyways, vestibular impairment or not. I always thought that when my children, however many there were, got older and were in school, I'd do something else. Maybe write more serisously. Or become a lactation consultant or a doula. But now I am not sure how long my daughters are going to need me, and in what ways. I don't know what the future holds, except for this partial knowledge of what might come.

No one knows what sorts of sadnesses await them and that is probably a good thing. While I can prepare by learning about low-vision accomodations, the anxiety it brings me to think about my children needing a service dog to get around can be paralyzing. I'm being completely honest here. I am sometimes terrified of the future. I ache for the things I think my daughters will not get to do.

Meanwhile, prayers and thoughts and kind words are rolling in. Comments on this blog, emails, Facebook messages, an anonymous letter in the mail...all telling me that so many people from all over are praying for my little family. How humbling to need these feel that they quench a thirst in me for mercy and grace. How surprising to discover how truly connected we all are, this Body of Christ. These prayers are slowly bringing me around to realizing that I can allow myself to be sad for the things I think are gone. It won't be until I can let go of those dreams that I can begin to have new ones.

Last weekend, snuggled on the couch with Gianna, we were talking about our trip to Boston. She was nervous because she is tired of getting her eyes dilated with eye drops and scared about having yet another doctor take pictures of her eyes.

"Why? Why do I have to?" Those big, brown eyes questioned me. Yes, why? Your genes. My genes, daddy's genes. I don't know. Not the right kind of protein for the cilia in your retinas. Yes. Why?

"You, and Pia. You have Usher Syndrome. It is why you are Deaf, and why you have different balance, and it's why we are going to the eye doctor a lot because maybe...your eyes will change and we need to learn about how to protect them."

I had to stop there because how do you tell a six year old she might lose her vision, especially when you don't know how quickly it will happen or if gene therapy will be ready in time to save it?

Plus, I was starting to get choked up, and I could tell she was concerned. I'm the mom here, I'm the one who sets the tone for this. It was grace, and grace only that allowed me to say,

"You can still do whatever you want to do. It might not look like the other kids, and it might take you longer, and you might have to work harder, but whatever you want to do you just tell me, or daddy, and we'll find a way. We might have to get creative, but we will figure out a way."

I was in a dark, dark place until I was asked to think about Gianna and who she is. I remember how she bravely let me put on her "ears" each morning even though she was scared. I remember letting her embrace giant speakers at a wedding so she could feel the beat of the music. I remember her little hands forming the most beautiful, imperfect signs. I remember how this past summer she cheerfully let me put her speech processors in plastic baggies, and then pin them to her hair, and then cover it all up with a swim cap so she could dive under the water at the pool but still hear her friend's voices as they played mermaids and sea turtles.

A few weeks ago, at the zoo, we ran into a lady who was using a guide dog. I could barely keep myself together, especially when Gianna wanted to know why the lady needed a dog to help her to get around. I ended up talking to the lady and she was so, so sweet. She expressed sadness that my girls had retinitis pigmentosa, which was the same cause of her vision loss, but she said, "They can still have a full life. I'm an athlete. I run marathons. If you support them, they'll be fine."

I am still sad, and I am still scared. But I am also starting to experience some hope and trust again. I have no idea what is going to happen, but I was never in control in the first place. When I found out I was going to be a mother, I didn't have any of this in mind, but isn't that motherhood, and parenhood, in general? Who of us would say, "Yep. I am exactly the kind of mom I thought I'd be, to exactly the sort of children I knew I'd have."

There's a lot in our culture that tells us we are in charge. We can lotion and potion our way to the exact moment we want to have a baby, and then we can even chorionic villae our way into believing we will have a baby that meets our criteria, whatever those are. But we're actually, really, not in charge and I'm realizing that is a good thing. Maybe if I were in total control I wouldn't have to suffer, or watch my children suffer, but then maybe I wouldn't have experienced any of the joys that have come to me completely unplanned.

Learning a new language out of love and necessity. Hearing the world for the first time through my daughter's ears. Growing in confidence that I know my children and their unique needs. Meeting people from all walks of life and being able to celebrate differing abilities. Watching my son replace the coil on my baby's head so she can hear his stories. Thinking that something is insurmountable until suddenly, it isn't.

I've got to let go of control, so I can be open to all the joy God has intended for me and for my family. Your prayers, they are getting me there.

Friday, November 15, 2013

7 Quick Takes: A Stright Up Miracle

1. This PiaBaby is.....wearing me out. Occasionally, she does stuff like this

 2. Or this.

And I take breather.

3. But mostly, it's a lot of this

4. And this.

5. This, too.

6. I realize that plenty of other mothers have had baby/toddlers who were compulsive climbers but this is my first go-around. Neither Gianna nor Dom had this bizarre desire to create a death-defying moment out of every.single.tall.item in the house. Additionally, the fact that she has NO VESTIBULAR SYSTEM seems to have escaped her notice. Keeping her semi-safe plus carrying around her 24 lb non-walking body is a full-time j-o-b.

7. Mostly, though, we are getting ready to leave for Boston in 3 weeks to see Dr. Eliot Berson with the Massachusetts Eye and Ear Infirmary. He is a leading expert in retinitis pigmentosa and he will be doing extensive testing on Gianna to determine the extent of the damage thus far and possibly give a vague prediction of future course of her vision loss. This is where the straight up miracle part comes in. Will you pray with us? My mom and sister had small prayer cards made at Office Depot, asking the intercession of Blessed Mother Theresa. She still needs a final miracle and well, we could use one. And if it is not God's will for our girls and their eyes to be healed, we'll need all the prayers we can get. Thank you thank you.

Jesus, you made Blessed Teresa an inspiring example of firm faith and burning charity, an extraordinary witness to the way of spiritual childhood, and a great and esteemed teacher of the value and dignity of every human life.  Grant that she may be venerated and imitated as one of the Church's canonized saints.
Hear the requests of all those who seek her intercession, especially the petition I now implore your intercession for the healing of Gianna's retinas and the protection of Pia's sight.

May we follow her example in heeding Your cry of thirst from the Cross and joyfully loving You in the distressing disguise of the poorest of the poor, especially those most unloved and unwanted.  We ask this through the intercession of Mary, Your Mother and the Mother of us all. Amen.

More Quick Takes over at Jen's, have a great weekend!

Monday, November 11, 2013

Clean Up

I'm supposed to be making lots of enchiladas right now, but I'm avoiding it by blogging. Except that I was having a hard time figuring out what to write about that didn't involve hand-wringing and retinitis pigmentosa. So I almost avoided the blogging by making enchiladas.

Fortunately I happened to begin G-chatting with my sister and she suggested I share with you my method of cleaning the house.

Let's say it's been a long freaking day. Your almost-four-year old would not.stop acting like a complete caveperson while trapped in aural rehabilitation therapy for your baby. Your baby ruined yet another cable for her v. expensive cochlear implant and your six year old lost her glasses. Again. Plus no clean clothes. Or a cook to prepare your dinner. Or maybe that's just me.

You get all the little tykes snug in their beds and at last, there is peace. You can even look in on them dotingly, and smile. Lovely children.

When you get downstairs, though, your house looks...insane. Like an episode of Hoarders has exploded all over your life. No worries, because today I am going to help you. It's going to sound a bit unorthodox but I promise you results.

Simply (I love when tutorials say "simply"...pretty sure it is code for "most ridiculous, complicated set of instructions forthcoming") take the toys, dress up clothes, wagons, dolls, sharks, empty play-doh containers, blocks, sleeping bags, metal cars, old shoes, and anything else you don't want to be reminded you own, and do this while standing at the top of your basement stairs:

To every item. Some nights, I like to do it one. by. one. Certain toys, as they land on the slowly-growing pile, sound very similarly to breaking glass. It's cathartic. Freeing. Existential. Glorious. Cleansing.

Then, close the door. Walk away. If you don't have a basement, my second method works just as well: throw it all in the trash.

Nobody freak out. I don't dislike raccoons. I think the guy throwing the raccoon was protecting his dog or something. Pretty sure that makes it ok.