Tuesday, March 13, 2012

Pedal Power

The gym was dark, except for tiny dots of light bouncing off the ceiling and light coming from the stage. The music was loud and very motivational. Over one hundred stationary bikes created five, maybe six, rows, and they filled the gym, leaving enough space for a small crowd around the perimeter. There was power in the room, and it wasn't of the electrical sort. This was the power given off when a large group of people come together for a cause. This was Pattison's Academy's 5th Annual Spinathon!

When I walked in, it hit me. I immediately teared up, but tried to hold it in. A few people came up and talked to me and the kids, and that made me try even harder to hold it in. By the time I got to the back of the room, I was crying. I mean bawling! Honestly, it was one of the most beautiful moments I've ever experienced. Here was a room full of people, spinning,sweating, burning for children the majority of them had nothing to do with. Special needs children, at that!

Lily was in her stroller, so I pushed her around, up and down the aisles. It was amazing. All of these people were smiling at her and waving, so I grabbed Lily's arm and started helping her wave back. Oh, the smiles! They were huge! And it was as if these people pedaling in this "marathon" were cheering her on! Shouldn't it have been the other way?!

I wish I could paint a better picture of Saturday for you. It was amazing and incredible and inspiring. My words lack that quality, but please believe me when I say that some Pedal Power was definitely in that room!

Brenda, Lily's OT, called me later that day to thank me for coming out and to talk about the event. She invited me to ride on her team next year, and I'm so, so, SO psyched! Here's the catch: for Brenda to be guaranteed a bike, she has to raise at least $1000. So far, she has raised $907. The way I'm looking at it, she needs nine people--JUST NINE--to donate $10. Just. Ten. Dollars! I know you can help in that way. I know you can be one of those nine donors who's willing to donate $10. That's one lunch that you'd be giving up, two and a half Starbuck's coffees, two gallons of ice cream. You get the picture. I don't think that's TOO much to ask, is it? Please help her. PLEASE help me. It, honestly, has now become a goal of mine to be a part of Pattison's spinathon, so I'm trying to help Brenda as much as I can. Remember, this goes towards camp that Lily will be attending in the summer and to the school that we hope Lily will be attending once she gets old enough. Even if she doesn't, this school is great, and it's such a great cause. Again, you can go to http://www.firstgiving.com/fundraiser/brenda-reagan/pedal4pattisons2012?fge=ask. That's Brenda's specific page where you can donate. Again, just nine people. Just $10 each. Won't you help?

As for the people who've already donated in Lily's name, thank you so much!!! Your generosity is amazing! Thank you for supporting not only Lily, but the other special children that are helped by Pattison's Academy.

Friday, March 9, 2012

Quality of Life Week--Day Five--Play

Who doesn't love to play?! Lily certainly does! In the following videos, Lily is playing with beans in her orientation and mobility therapy session, playing kick the ball, playing on her rocking horse, and playing kisses with her daddy.

Lily doesn't run or go to her toys the way that Gabriel and Soleil do, but she has her own way of playing. It makes her happy, and to me, having a reaction like that to people and things is important in evaluating quality of life.

Thursday, March 8, 2012

Quality of Life Week--Day Four--Love

I think I read some time ago that someone responding with a comment (not sure what that person was responding to, so excuse the fuzziness here) "accused" children with special needs of not being able to tell the difference between a person and a door. Or maybe it had to do with Trisomy 18 children. I don't know, but the gist of the problem is in this accusation.

Even if that's not a true comment and I'm thinking I read about it, there are people out there who think that way.

I'd like to introduce them to Lily. . .and to other Trisomy 18 children, I might add.

I chose "love" for today's topic because this little girl knows how to love! You can see it in her eyes. You can feel it in her interactions. And might I add that she does not give the same response to a door.

I'll also add that her love goes beyond this family. The video that I'm posting tonight shows Lily interacting with a lady from our church, C. I've edited the video (so it's a good bit shorter than the original) because C asked me not to put her on YouTube, which is how I get my videos onto Blogger, but if you were to see the whole video, you would see that Lily is interacting with someone who is not a family member! But again, look into her eyes. See the joy that she showers others with.

I just love it that my little girl knows how to spread the love!

Wednesday, March 7, 2012

Quality of Life Week--Day Three--Laughter

Clenched hands, low birth weight, low-set ears, mental deficiency, small head, small jaw, heart defects, growth deficiency, low survival rate--these are some of the characteristics I read about children born with Trisomy 18 after Lily was diagnosed with the condition. I didn't see the positive things at first. It was after much digging that I began seeing that children with Trisomy 18 can even survive.

But I always wondered about what my daughter would be able to do if she did survive. I guessed she probably wouldn't walk, probably wouldn't talk. But would she smile? Would she laugh?

She does both.

While her smile is a product of her happiness, her laughter was more a product of tickling. That is, until she turned two. I'll never forget the day we were at Dave's school and Gabriel was laughing at me because I was being silly. That was the first day Lily laughed without being tickled! It was such a beautiful moment!

But it only happened on that day. . .until this fall when we were visiting my cousin, Bruce, at my aunt's house. Bruce was holding Lily, and Soleil was being silly, so we were all laughing at her. To our surprise, Lily started laughing, too! It was so special to me that she was laughing while my cousin (who doesn't get to see her very often) was holding her. Another moment burned in my mind.

Now, Lily laughing when other people laugh is quite common. She's been known to laugh with her therapist, even. You'll see below a video of her laughing with Dave and then another video of her watching funny baby videos and laughing with us at that--two very special videos.

I love it that Lily laughs with people. Her laughter is beautiful, contagious, and immensely spirit-warming.

Tuesday, March 6, 2012

Quality of Life Week--Day Two--Soul

Dear Prayer Warriors,
Please, please, please pray for a little girl named Kayli. She is quite sick and her mom is worried. She has Trisomy 18, and this weekend she and her family are supposed to go to Florida for Kayli's wish. Give Kids the World is holding a parade, and lots of T-18 families will be there, supporting her. We will be taking a short trip down, too, to meet up with other T-18 families. It breaks my heart to think that this family may have to cancel this meaningful trip. So please pray!


The eyes are the window to the soul. I believe that. The video that I'm posting today shows Lily playing, but look in her eyes. Look deep. You'll see that she has a joyful, loving soul. Generalize, too. Because that's what you'll see in her every day.

Her eyes that captivate me so. They communicate to the point where I feel I've had a conversation with her. They show so much more than just happiness and love, though. They show awareness.

There are so many out there who believe Trisomy 18 is a death sentence. Please feel free to share this video with others so that they might see that behind the diagnosis are beautiful children who have soul.

Monday, March 5, 2012

Quality of Life Week--Day One--Drive and Determination

For some reason, I thought that my Quality of Life Week posts were created in March, and I also thought they were from last year. Wrong! It seems as if they were from two Septembers ago. My how time has flown! After thinking about it, it just seems more appropriate that my Quality of Life Week posts should be in March for Trisomy Awareness Month. After all, part of our advocacy is about showing that our trisomy children do have quite the quality of life. Unfortunately, the textbooks never show that. Hopefully, the videos that I post this week will show that children with Trisomy 18 can have a very positive quality of life.

Well, I've been giving some thought today about what "quality of life" means. Sure, a child with a positive quality of life should be happy, well taken care of, etc. But there seems to be more. I've come up with five qualities that Lily has that shows she has a positive quality of life: drive and determination, soul, laughter, play, and love. Today's videos show Lily's drive and determination. She is such a hard worker! And she loves to hear "Good girl!" Every therapy session surprises us with her giving that much more. The first video was taken in September; the second, in November.

Saturday, March 3, 2012

An Opportunity

Last summer, Lily got the opportunity to go to Pattison's Academy Summer Camp. This summer, she's going to have that same opportunity. I'm excited about this because on Friday, Lily's physical therapist said that she wants Lily to use a gait trainer when she's at camp! This means that Lily will be able to practice walking (with support)!

On March 10th, Pattison's will be holding their 5th annual spinning marathon to raise money for their summer camp and their school (which we hope Lily will be able to attend one day). Lily's occupational therapist, Brenda, will be participating in the event as a team with three other ladies. They are currently raising money and are only 18% toward their goal. (Times are just hard for people right now.) I asked Brenda to share her information with me and told her that I'd post it here and on Facebook.

If you feel inclined to contribute to this wonderful cause, you can visit Brenda's FirstGiving page at http://www.firstgiving.com/fundraiser/brenda-reagan/pedal4pattisons2012?fge=ask. Even if it's only $5.00, every little bit helps. The nice thing is that if you are interested, you can pay online through her page (it's even tax deductible). So no matter where you live, you can contribute.

I just cannot express how great Pattison's summer camp was for Lily. Along with the therapy, she got to ride horses, go swimming, attend a luau, and participate in the play, Horton Hears a Who. But the best part was seeing her eyes light up and a smile spread across her face each day we walked in the building. Other campers--yes, even those who were wheelchair bound--went to the climbing wall and were able to actually make it to the top of the climbing wall!

It's a great cause--endorsed by Darius Rucker, I might add!--, so if you could help, just know that you're helping children like Lily have an experience that's not just all therapy. They have themes each week and truly make it a camp experience for children who'd normally not get an experience like that.

Here's a picture of Lily with her counselor, Lisa. They adored each other!

Thursday, March 1, 2012


Parents who have a child with a disability--regardless of the severity--have many challenges. There are routines that are beyond the everyday routines of a healthy child, medications, extra doctor visits, therapies, worries for the future that go beyond the normal worries, and most of all, coping with the dashed dream.

Those are scary things to someone faced with the newness of a diagnosis. And many facing that new diagnosis choose, sometimes because of the coaxing of others, to terminate the life growing within them.

As Trisomy Awareness Month begins, I think about advocacy and try to create my own advocacy stance. Do I educate others about Trisomy 18? Should I go the medical route and do as much as I can to enlighten that community about the quality of life some of our babies can have? Should I take a more extreme approach? They are all worthy choices, but there is one closer to my heart.

Before I explain, let me say that although I am pro-Lily's-life, I am not full-fledged pro-life. I just believe that a woman should be able to make her own decision...which also means she must live with her own consequences. With that being said, however, I will do all I can to share with others the beauty of a life with a child who has a disability and try to convince all I can that it is such a joy-filled life and that it's such a shame to let go of a life like that. So that is my advocacy stance.

But I think there is a bigger shame. Today, I heard the song "You Raise Me Up" on the radio. Part of the lyrics go, "You raise me up so I can stand on mountains. You raise me up to walk on stormy seas. I am strong when I am on your shoulders. You raise me up to more than I can be."

I couldn't help thinking about parents who have children with disabilities and the challenges that have come their way, and I'd bet you that the majority, if not all, of them will tell you that those challenges have made them better people. I know I can say that.

You see, it is through my challenges that God was allowed to raise me up and make me more than I could ever be on my own. I think I could beg people to see it that way. We are such a band-aid society! But by being that band-aid society, we neglect to allow God to work in us to His fullest potential, which so often happens within the challenges. And I find THAT is the bigger shame.

Life with Lily is hard. I have never denied that. But I wouldn't change it for the world. There is so much joy, and I feel God's blessing--not His punishment--in it all, even when life is not going my way.

It just breaks my heart to think that someone would deny herself a life like that.