Thursday, April 24, 2014

if you have a second...

Hey Friends, I have a super special request.

This is one of Jonah's best buds at preschool, Eliza.


She is taking Jogging for Jonah and running for a cure very seriously. She is training at home and has her own fundraising page. 


Today she was holding up a poster in the hall that she made with her mommy and yelling to everyone to "Come jog for Jonah!!!"


She has the sweetest heart and has been so sweet to Jonah from day one. (And her mommy is someone pretty special to me too.) Her fundraising goal for Jogging for Jonah is $150. She has currently raised $60. If you have $5 extra would you consider donating it to J4J through Eliza's fundraising page? I'd really love to see her reach her goal and for her to know that she is doing something SO kind and SO important.


Her own words from her fundraising page:
"Jonah is so nice and very sweet. He will be my best friend forever. He is beautiful like a rose flower. Please help my best friend."

Here is the link to her page. Donating is easy, fast and tax deductible. I really appreciate you supporting Jonah AND Eliza. They are both very special kids.



Tuesday, April 22, 2014

happy birthday gabe!

We celebrated our sweet Gabe today. He's turning six today in Heaven. We are not sad today, we only rejoice. Rejoice for where he is and that we'll see him again and that he was pure, innocent, good, and perfect. We are thankful for the way his life and death grew our faith, cemented our marriage, and taught us what is really important. And we stand expectantly on the rock solid promise that we will see him again. How sweet the victory!

















Monday, March 31, 2014

"Butterfly Girl" movie

I don’t know the right way to start a movie review, but I will say this. I just watched a documentary and I liked it. That’s not normal for me. :)

This past weekend I had a special opportunity to watch and review the movie “Butterfly Girl,” a documentary about Abigail Evans, an 18 year old girl living with Recessive Dystrophic Epidermolysis Bullosa. It was amazingly well done. The music was written and performed by her father (really good… kind of a folk rocky sound), and the cinematography was beautiful.


Abbie, at the time of filming, was 18 years old, and like most teenagers, ready for some independence. The whole film, while showing her struggles with EB, focused more on who she was and her dreams. I liked that. I think so much of the time, people tend to look at what they can’t do or what they won’t accomplish, rather than chasing their dreams. EB kids are limited in so many ways, but this movie focused on all the things Abbie could do and wanted to do, rather than her limitations. It gave me hope as an EB mom that Jonah will be able to do more than I ever expected. There were a couple of times in the movie that Abbie sat on a rock and on a metal deck railing, bandage free, and Matt and I were astonished. Those things may seem little to people who don’t live with EB every day, but it really is huge when your skin is so very fragile.



Of course I watched the movie as an EB parent, so watching Abbie with her parents and their special dynamic really moved me. Abbie’s dad is kind of rock-n-roll and “tough love” and her mom is super compassionate, makes her smoothies, and stresses out when she can’t be there taking care of her. In Abbie’s words, it is “the best of both worlds.” While her parents lovingly meet her every need, they also encourage her to be adventurous and to go out on her own. They are so supportive when she says she wants to go to college and go to California (from TX) on her own to be part of a research study. As she’s about to leave for CA, her mom is visibly worried, knowing this is the first time Abbie will be on her own for something medical like this. And that she’ll be a plane ride away. Although they both act tough for her, I could see in their eyes, as she walked away from them at the airport, exactly what I would feel if Jonah were walking away from me for the first time.



When you have been your child’s everything since the day they were born - when you’ve fed them, bathed them, tended their wounds, done their dressings, helped them go to the bathroom, changed out their g-tube, cried with them through their hardest and most private moments – how do you start to let go? Knowing it’s best but longing for them to need you like they always have. Wanting to protect them and do everything in your power to keep them safe, but letting them go, because you know that life is more about their happiness than their safety.


I really encourage you to see this movie and if it comes to your area, it is more than worth your time. Abbie is amazing and her attitude is so positive and upbeat. I pray for Jonah, all the time, that he will not become angry and cynical, but that he will love life and live it to the fullest. Abbie gave me hope.


Matt and I have always said that, if Jonah wants to do or try something, we will do everything we can to empower him and help him do it. And then he can weigh the risks and decide if it’s worth it (maybe no tackle football though). :) I’m hopeful that he can have a life full of adventures, dreams fulfilled, and happiness in who God made him to be… whether he has 20 years or 80, I pray he lives them with hope.

Matt and I will be going to Durham this Friday for the Full Frame Documentary Film Festival, where "Butterfly Girl" will be showing. There will be a Q&A with the film makers afterward, and we would love for any of you, who can, to join us. It's worth taking your lunch break to come see. I promise.

Here are the details:
Friday, April 4 at 1:30pm
Carolina Theatre – Cinema 1
309 West Morgan Street
Durham, NC 27701
For ticket information, click here: http://www.fullframefest.org/passestickets/tickets/

Feel free to email me if you decide to come. Would love to come say hi.

To learn more about Butterfly Girl, visit: http://www.debra.org/ButterflyGirlMovie




Friday, March 21, 2014

Jogging for Jonah 2014 - We need your help!




Hi Friends,

Jogging for Jonah is quickly approaching (May 10th!!!), and I would LOVE for all of you to get involved one way or the other, to help fund research for a cure, patient/family advocacy and EB awareness programs. We are raising money for DebRA of America for all of these things, and every dollar counts.

Ways to get involved -

1. Are you local? Register to participate and create a fundraising page to raise money. Click HERE.

2. Are you part of a local business that would be a business sponsor? Click HERE.

3. Can't come but want a shirt? Buy one! (Will ship within 2 weeks after event.) Click HERE.

4. Sponsor a runner. Click HERE. If you don't know of anyone running, sponsor ME! :) Click HERE.

5. Make a general donation to our race. Click HERE.

(You can find all of these links at http://joggingforjonah.com)

Will you please consider helping in some way? Even $5 to our cause is huge. Imagine if everyone who reads this (are you guys still out there???) donates just $5. We could raise a lot!

Hugs to all of you. And as always, thanks for joining us on our journey.



Sunday, March 16, 2014

our video testimony

I meant to post this last week. This is a video testimony that Matt and I did that went along with our written testimony for our church's 40 day study. The theme was God's Story My Story, and it was an amazing 40 days. I'm sad to see it end.

Here is the video and below you can find the link to the written testimony. Each day there was a story from the Bible paralleled with a testimony from someone from our congregation. Ours was one of many, many amazing stories of God's constant presence, faithfulness, and redemption. Feel free to CLICK HERE to see and read the rest. You'll be blessed.

I can't wait to someday soon share the rest of our story up till now, including our Sweet G. Life is good.

Thursday, February 27, 2014

FIVE!

This kid turned FIVE today...
...and I have been tearing up about it all day long.

Not the "Oh no, my baby's growing up" tears, but the "I cannot believe what God has done" tears. I spent a few minutes on the blog today reading some posts and many, many reader/prayer warrior comments from late Feb and March of 2009. And I am just IN AWE of how God got us through that terrifying time.

How did we stay so positive? How did everything turn out like it did? How did we not crumple up in fear and despair? How did he make it out without infection? How did we come home in 32 days when they told us it would be a minimum of two months, if he made it home at all? How is he five when there was a 90% chance he would die in his first year of life?

The answer is GOD. And prayer. And that is all.

He is so good and so faithful and so mighty. And the truth is, He would be all of those things even if Jonah had died. But he didn't. And I'm so grateful. So very very grateful.

Here is Jonah this morning, when we woke him up.


He just melts my heart in a puddle on the floor.

And here we are at the mall tonight, riding the train as part of his "birthday fun" night.

We've come a mighty long way, Friends. I stand amazed.

Posts from February of 2009.
http://patriceandmattwilliams.blogspot.com/2009/02

Posts from March of 2009.
http://patriceandmattwilliams.blogspot.com/2009/03

Tuesday, February 4, 2014

Jonah talks about the box turtle

He didn't really get going till the 45 second mark so feel free to skip to there. My phone started ringing so I missed the part at the end where he emphatically said, "Don't EVER go out in the road to help a turtle. Go inside and call your MOTHER OR FATHER for help!"