Wednesday, November 12, 2014

we are loved

Jonah fell last week on the sidewalk at school and caught himself with his hands. It was bad and he took all the skin off his palms. He fell because he was skipping because he was happy. He is all healed up now, but for four days, he could barely use his hands, and for seven, they were bandaged.

After a couple of "good" days, he woke up this morning with a corneal abrasion unable to open his eyes. We spent the whole day in the dark and will probably spend the next two days like that as well.

So needless to say, it has been a rough couple of weeks in terms of his EB and the pain he has been in. BUT this is my Facebook status tonight and it goes for you guys who faithfully read this blog too... even though I only post once a month... :)

Although I HATE EB and all it has done to my Jonah the last two weeks especially, I am overwhelmed (and sporadically in tears) over how incredibly loved we are. To know you guys are praying for him, thinking about him, asking how you can help... it's so good. His Kindergarten teacher, Ms. Pabon came over this afternoon, after teaching 11 other kids all morning, to visit with him and bring him audio books (and a casette player because ours is in storage), Grandaddy brought us milkshakes and told him approximately 107 stories, his other Kindergarten teacher, Ms. Boone called tonight and let him chat her ear off for 20 minutes to break his monotony, and Mimi Marykay came tonight with a stack of books to read to him (by flashlight because we had to be in the dark) and spent a long time entertaining both boys. So as much as I hate EB, I think about how much we might be missing out on if we weren't forced to slow down and let ourselves be loved. It's an important thing. To ask for help, to let people into your life, to be real with each other. To be vulnerable. I'm thankful for the hundreds (thousands?) who love and pray for us. And I'm thankful to know it. Fully.

Friday, October 10, 2014

Eddie Vedder publicly advocates for EB research!

Several famous people are have been and are becoming proponents and public advocates for EB research. The most recent is Eddie Vedder of Pearl Jam. This is so amazing. Awareness means money means research means a cure. Check it out!

And this video and a short article were on Rolling Stone today too HERE.

What is so exciting about Dr. Tolar's work is that it could not only be the answer for EB sufferers but for sufferers of thousands of genetic diseases. How quickly could we get to five million if we just got the word out and everybody gave a little? I'm so thankful that Jonah was born at such an active and amazing time in terms of EB research. I truly believe I will see a cure in his lifetime. And I'm praying it's much sooner rather than later.

Wednesday, October 8, 2014

let your light shine

Jonah wanted to play "Sunday School." He grabbed a toy light bulb and came up with this completely on his own. The first time, which I didn't catch on video, he even talked about the Holy Spirit living inside us. He has more light inside him than he thinks. :)

Monday, October 6, 2014

checking in!

Hello Friends.

I miss you! I'm really going to try to get better about blogging. I miss the therapy and I miss the community. And I love having a journal of the boys' lives. The last two years will just be sort of missing. :)

Things are going really well. Jonah has started Kindergarten (a post on that to come soon) and is totally in love with his school and his teachers. Because our school system would not qualify him as special needs, he would not have had an aide to help him (really just best not to get me started), so we opted to send him to a half day private school that we LOVE. Seriously, it is such a blessing. School is something I have been thinking about since Jonah was probably a year old, and has always been a source of anxiety for me. But from the first time I walked into this school, I have felt God's hand all over it and such a peace. It's where he is meant to be and we are so grateful.

G is mischievous, into-everything, sweet, rotten, snuggly, strong-willed, and hilarious. He writes on the table, puts my hairbrush in the toilet, and never fails to "help" load and unload the dishwasher. He has dimples that make you want to squeeze him and says "Mama!" every time I come back (even if I've only been gone 30 seconds) in such a way that melts my heart. Like I'm his everything. It's pretty amazing. I know you guys are dying to hear news of his adoption, and so are we! We have officially entered the adoption phase, but it's looking like it will be November or December before it finalizes. We are okay with this and are just so grateful that he's ours. But I can't wait to blow up the internet with his sweet face.

For now, here are a couple from the last couple of weeks -

From the fair this past Saturday. G wasn't technically 34 inches, but needed to be to ride most of the rides. So maybe I poofed up his hair a little bit to add half an inch. I couldn't rightly say.

Tonight he weighed himself whilst eating Doritos. We share the same health and wellness philosophy.

From the Greenway Trail in Boone. We went to visit my sister at App two weekends ago.
Jonah was a ring-bearer in Matt's cousin Jake's wedding last weekend (another post to come). He was maybe the cutest ring bearer on the face of the planet ever. And by maybe I mean certainly. He couldn't wear the dress shoes, too narrow for his bandaged feet, but check out his sweet Chucks!
The first day it was cool enough to wear fall clothes. I thought he looked adorable. Later found out these were girls pants. Whoever handed him down girls pants better watch out. You may suffer the wrath of my mother-in-law. Can you see it though? The ruffles on the pockets? My bad.

It's almost midnight and I'm off to bed because the thing about my sweet, peaceful children? THEY WAKE UP. And they need things. Lots of things. Constantly.

Love to all of you. I hope in all things you see that God is working them for good. He does, you know. He's faithful like that. He's a Redeemer of Stories. Make sure to take note of how He's working to redeem yours. Because I promise He is.

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.