Friday, April 27, 2012

The Sweetest Moment

I really wish I knew how to make a picture post on this site, because tonight, I got to witness one of the sweetest moments a mother could hope to see. And I caught it on camera, catching a moment that is worth far more than a thousand words to be remembered forever.

I caught Lily telling her big sister "I love you" in sign. While Lorelei signed it back. That moment, one that will remain imprinted in my heart through the eternities, captured to be shared by all who love them. The raw emotion of such a moment even being possible catches up to me every time I think of it. What sweeter moment could a mother hope to experience but to see her children expressing love for each other?

For a long time, we didn't know if Lily would be able to express anything. We hoped and prayed and stayed positive, but we did wonder if Lily would ever be able to sign. If she'd understand. If she'd physically be able to open her hands to sign. If she'd survive the incredible battles she's fought to get to her second birthday. Then at nine months old, Lily started signing "Mommy" after Lorelei took her hand and taught her how (that was another really cool moment). And then, just before her second Christmas, Lily's first at home, she picked up a second sign. And then, right after my father passed away, having never met Lily... Lily started signing family. (She signs half of the sign while one of us signs the other half. It seems to add something extra magical that way.) So Lily can, and chooses to, sign three magic signs.

And Mommy's heart says that if all Lily ever knows of life is love and family... what a joyous life she will have. And if she learns more, experiences more, and shares more... how great will that be for the world.

Thursday, April 26, 2012

"Thank You"

I had a most amazing experience yesterday at the gym. I had the opportunity to use my signing skills to communicate with someone who is deaf. He had been trying to communicate that a certain machine wasn't working well and then another gym member used the machine next to it with the same luck. When I signed "Same?", he was rather pleasantly surprised to see that I was a fellow signer. Below is the start of our conversation, as it was actually signed. (ASL syntax is not the same as English, so it may seem awkward to read, but actually makes good sense signed.)

Me: "Same?"
Him: "Same. Sign little?"
Me: "Little. My daughter deaf."
Him: "How old?"
Me: "Two." reaching for my phone, which has a picture of both Lily and Lorelei
Me again: "My daughters."
Him: "Which one?"
Me: "Little. Hearing, medication, no hearing. Deaf. Oh well. Mommy learn sign."
Him: "Thank you."

I never imagined being thanked so earnestly for learning to sign for Lily. It really meant a lot to me, especially coming from someone who is deaf and uses ASL to communicate. I'm not yet to the point where I can think that deafness is not a disability (which is a common viewpoint for the Deaf community), but I am at a point where I think disabilities are only as limiting as we let them be. Using sign language to communicate with my deaf daughter makes just as much sense to me as using a wheelchair for my daughter who is unable to walk. Yes, it takes a lot more effort to learn, but it has so many benefits that learning is beyond worth it. And, once more, it's what Lily needs. Isn't it my job as her mother to give her what she'll need in life?

The fact is Lily IS disabled. Even beyond her complete hearing loss. She also has cerebral palsy and enough difficulty breathing to require ventilation via a tracheostomy and she's oxygen dependent and severe developmental delays across the board. That is a disability. It's certainly enough to qualify her for a disabled parking hang tag. However, NONE of that makes her UNable. And there is nothing wrong with being disabled. It's just a word, a word that describes the fact that Lily isn't like the rest of us. Lily is amazing. Lily can still do just about anything between adaptive equipment, adapting circumstances to meet her needs including taking extra time when needed, having people around her who support her, and the sheer will power to want to do it.

Yes, Lily will have to work for everything she needs, but she doesn't know anything different. And I refuse to raise her to see her disabilities as limiting. Because that's another part of my job as her mother. To show her that she is able and should dream, and work toward the dream, of whatever her heart desires. To hold her hand on the journey and cheer her on. To be there when it gets hard and remind her that better days will come. It doesn't matter if she wants to be a mother, a doctor, or a janitor... if her heart desires it, she'll find that path.

About my exchange with my gym friend... I also had my first opportunity to tell someone my name via ASL fingerspelling. It was fun and memorable. The whole exchange took less than fifteen minutes, but I'll remember it for the rest of my life. I used a skill that I've been developing for Lily to have a meaningful exchange with another person. It's really opened my eyes to what signing with my daughter will be like eventually, as she learns more signs, and it definitely made me hungry to learn so much more. And being thanked was really just the icing on the cake, because my heart is so full of joy for what Lily DOES have... a family who loves her dearly.

Wednesday, April 11, 2012


Beads of Courage ( is a program that helps give children ownership of their medical battles. Basically, through the program, a child gets beads for each of the procedures and medical support they endure in their fight for healing. They recently added a chronic illness program to their list, so I've looked into it again for Lily. That, and I think she'd enjoy playing with her beads with her hands, so they'd have some meaning for her.

Beads of Courage sent me a list of what colors for what events so I could send in a request for Lily. It's a rather extensive and somewhat overwhelming list (they allow estimates to keep it simple for families)... and Lily qualifies for every single category on the standard list. Every single one. In her first year alone.

I'm floored. Maybe not all of her supporters are as astounded by this as I am, but I don't see all of that when I look at my daughter. I know she's alive because of a miracle. A big miracle. And I know how hard we fought to get that miracle because I was right there with her, holding her hand the whole way. But when I look at Lily, all I see is a little girl who loves life, loves her family, and just simply loves.

I think that's what real courage is. Loving life in spite of everything trying to stop you. So I'll submit her history via her own bead journal, because Lily has amazing courage. And I really do think she'll love her beads.

Tuesday, April 10, 2012

Happy birthday, Mommy!

It's been a great birthday. A dream compared to last year when Lily was sick. My birthday was right before we took her to the hospital with a cold and she stayed for three months. This year... the contrast is amazing. Lily smiled at me. She held my hand. She let me feed her ice cream from Baskin Robbins when we went to use my birthday coupon.

I can now proudly say that I am twenty-seven years old. I'll own it, all twenty-seven years, because they carry my battle scars. Lily gave me that. For such a little girl, she's given me a lot. And her sister too, because watching Lorelei love Lily is one of the greatest joys life can bring me. And she's so good at it.

Today really was a magically simple and wonderful day.