Tuesday, July 1, 2014

a sweet mercy

I have had a really hard time this week dealing with some of the things Jonah/we aren't getting to do/be a part of because of his EB. I have been bitter and resentful and really struggling. And even though I was being ungrateful and overly dramatic, God gave us a special treat today and I'm so thankful. We went up to Stone Mountain today with my Dad, Maw Maw, and Paw Paw. We went to the falls there (knowing it would be about 15 degrees cooler and bearable for Jonah). Although I had pre-discussed with Jonah that he couldn't get in the water because of his bandages (I had no way to do dressing change if he got wet) and he agreed he would be happy just watching, he got pretty sad once we got there. He, all of a sudden, got a really sad look on his face and when I asked him what was wrong, he said, "I just see all those other kids having fun and I wish I could have fun like that too." So you better believe I grabbed his hand and we headed straight for the water, bandages and all. He got a few extra blisters because of it and his bandages got soaked and filthy, but we just put a towel in his car seat, let him stay soaked for a few hours till I could get home and give him a bath, and the world did not end. So glad we got to experience life in this way. I grew up in the woods and going to the mountains and I have ached for him to have those experiences. Today was his first time ever in the woods! Thanking God tonight for possibly-bacteria-laden creek water, filthy sand-filled bandages, priceless memories, and sweet mercies.
(Don't miss the video. It's the best part.  )

Sunday, May 25, 2014

update on Eliza's goal

Because of your love and generosity, Eliza met and exceeded her $150 goal.

Sweet girl raised $2,645.

Thank you so so much for your help. You made two wonderful kids VERY happy.

Friday, May 23, 2014

big moments

Look who graduated pre-school. Most mommies may cry because time is passing too quickly and they can't believe their babies are ready for Kindergarten. I cried because I JUST CAN'T BELIEVE he's here at all. We have come so far, Friends. I'm just so thankful. Between Jogging for Jonah and pre-school graduation, I am just overwhelmed with God's goodness and what He's done in Jonah's life. I will never stop giving Him all the glory.

And if you want to see what made me CRY MY EYES OUT at Jogging for Jonah... completely caught me off guard, how emotional it was. God is good.

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