Happy 5th Birthday to our Sweet Gabriel Matthew.
We know you are at home with Jesus, and wouldn't call you back if we could. There's no sweeter place, baby boy. We'll see you soon!
Monday, April 22, 2013
Friday, April 19, 2013
hold fast
Feeling tumultuous in my spirit this morning. So much going on. The events in Boston, a huge issue with the timing company for J4J, so much left to do for that and feeling overwhelmed, what would have been Gabe's 5th birthday coming up Monday but knowing I will be sitting in court all day Monday, hoping G's case will be called (for the fourth time), some fears about some future unknowns.
And then I was reading in Romans 4, along with my Bible plan, this morning... "Against all hope, Abraham in hope believed...without weakening in his faith... he did not waver through unbelief...but was strengthened in his faith and gave glory to God, being fully persuaded that God had power to do what He had promised."
In a world with so much stress, anxiety, and unknowns, we must pray daily to believe God has the power to do as He's promised. Hold fast, Friends.
And then I was reading in Romans 4, along with my Bible plan, this morning... "Against all hope, Abraham in hope believed...without weakening in his faith... he did not waver through unbelief...but was strengthened in his faith and gave glory to God, being fully persuaded that God had power to do what He had promised."
In a world with so much stress, anxiety, and unknowns, we must pray daily to believe God has the power to do as He's promised. Hold fast, Friends.
Wednesday, April 10, 2013
Jogging for Jonah - we need your help!
Hi Friends. Jogging for Jonah is quickly approaching, so I just wanted to make sure those of you who aren't on Facebook know about it. It will be May 4th at Tanglewood in Clemmons. There will be a 5K and a 1 Mile Fun Run. Walkers are welcome at both, but we ask if you are walking and pushing a stroller in the 5K, you try to stay to the right so runners can pass.
We are desperately needing business sponsors, volunteers, and donations for our raffle and race prizes. You can also just make a straight up donation if you're not local but would like to help. All proceeds go to DebRA.
Even more than the money, I just want us to get the word out about EB and have tons of people come out and have a great time, celebrating God's goodness in Jonah's life and fighting for a cure. If we all do a little, we can make a huge impact.
I don't think I've shared this here on the blog, but this conversation happened a few weeks ago.
Me: Jonah, you think you might get married someday?
Jonah: BUT I can't get married with bandages on.
Me: Why not, Buddy?
Jonah: But I don't want to have bandages when I'm a grown up.
Me: Well, baby, you might always have to wear bandages.
Jonah: (tearing up) But I don't want to have bandages anymore.
Me: Well, I don't know Buddy. But let's just start praying now that you won't have to have them when you're older. Maybe God will heal you.
Jonah: (sadly) Okay, Mom.
I hope and pray that my sweet boy can grow up and get married (if he wants to) without his bandages. Although I know an ultimate healing will come in Heaven, I hope and pray he can know a life without boo boos and pain here on Earth. He was born at a good time, and there are huge strides in research happening. I pray things move quickly and Jonah will see a cure in his lifetime!
Okay, I'd love to have you there or would love your support if you're not local. It means so much to us how y'all have wrapped your arms around us since the very beginning. We appreciate you.
I'm going to give you a list of direct links here to make it easy.
To register:
To volunteer:
To buy a t-shirt (if you are registering to walk/run, a t-shirt is included in your registration fee):
To be a business sponsor:
To create your own fundraising page:
To make a monetary donation, you can use my fundraising page:
To donate a raffle or race prize:
Email my friend, Jenn, at j4jraffle (at) gmail (dot) com.
To see all of this info in one place, visit http://joggingforjonah.com.
Thank you all so much!
Wednesday, April 3, 2013
disney (Instagrammed)
I have tons and tons more photos, but haven't had a chance to sort through them all (and heart G's face on them) yet, so for now, here are the Instagram photos I posted throughout our trip. Sorry for my lack of blogging. It's just that by the time we get the boys in bed and our chores done at night, it's usually after 10:00 and I just don't have the energy to do it. I want to get better about though, if for no other reason than to have a way to "scrapbook" our family adventures. And I miss you all! Feel free to follow me on Twitter or Instagram in the interim. I'm "momtobabyjonut" on both. :)
Matt's parents, Aunt Melanie, sister and her family, and we went for Matt's sister's 40th birthday. Best. Birthday. Party. Ever. :) We did day one at Magic Kingdom, day two at Hollywood Studios, day three split between Animal Kingdom and Epcot, and day four back at Magic Kingdom. I am certain that Magic Kingdom was Jonah's favorite (because of the train alone, that we road at least four times), but Matt and I both loved Hollywood Studios the most.
Matt's parents, Aunt Melanie, sister and her family, and we went for Matt's sister's 40th birthday. Best. Birthday. Party. Ever. :) We did day one at Magic Kingdom, day two at Hollywood Studios, day three split between Animal Kingdom and Epcot, and day four back at Magic Kingdom. I am certain that Magic Kingdom was Jonah's favorite (because of the train alone, that we road at least four times), but Matt and I both loved Hollywood Studios the most.
Tuesday, April 2, 2013
happy (a little late) easter!
I feel sad that I have to cover my sweet boy's sweet dimpled cheekies, but so it goes. Take my word for it, HE IS THE CUTEST BABY EVER. I love him. I love my Jonah. I love our family so much. I'm full of praise and gratefulness. Easter and the resurrection mean more to me now than they ever have, and I thank God for his faithfulness, goodness, and provision. Happy Easter!
Tuesday, March 19, 2013
jonah dancing at Disney
We just got back from a week at Disney World. I haven't had time yet to load and edit photos, but here are a couple of videos of Jonah breaking it down while we were there.
Chubby Checker was giving a concert at Epcot while we were there. As you can tell, Jonah enjoyed it.
And this one is from our last night at Magic Kingdom. We randomly came across a dance party. Jonah was so inundated in his moves, he didn't even notice when Goofy came up behind him and started dancing! You'll also get to see Cousin Will's signature move in this one. :) (Excuse the crazy camera work... I literally had to take Jonah's head and turn him around before he noticed Goofy.)
We had an amazing (and EXHAUSTING) vacation. More to come soon! (You know, as soon as I catch up on sleep and finish unpacking.)
Chubby Checker was giving a concert at Epcot while we were there. As you can tell, Jonah enjoyed it.
And this one is from our last night at Magic Kingdom. We randomly came across a dance party. Jonah was so inundated in his moves, he didn't even notice when Goofy came up behind him and started dancing! You'll also get to see Cousin Will's signature move in this one. :) (Excuse the crazy camera work... I literally had to take Jonah's head and turn him around before he noticed Goofy.)
We had an amazing (and EXHAUSTING) vacation. More to come soon! (You know, as soon as I catch up on sleep and finish unpacking.)
Wednesday, February 27, 2013
happy birthday, jonah!
My dear, sweet, hilarious, miraculous, tender-hearted Jonah,
Today you turn four years old... and what an amazing four years they've been. Jonah, we didn't know if we'd get even one year with you and God has given us an incredible FOUR! You are probably the most affectionate, compassionate, caring child I have ever known.
When people are hurting or upset, you are hurting and upset with them. When I told you a few weeks ago that your baby brother was sick, you burst into tears and cried, "But babies aren't supposed to be sick!" That's your heart, my sweet boy - constantly thinking of others.
You could dwell on your own pain and boo boos, but you don't. You focus on the fun and joy in life. You pray for others and then ask about them days later, when we're not even talking about them, wondering if they're doing better.
We could not ask for more, Jonah. Of course we pray for your healing and that God would take your pain away. And we will continue to ask and have confidence you will one day be healed. BUT, the struggles you've faced and the pain you know has made you who you are, and we couldn't be happier with who you've become.
You are so sweet and kind, but on top of those things, you have a silly, funny little personality that goes along with a smile that lights up a room. You keep us laughing and we DAILY recount stories to each other of the hilarious things you've done and said. Thank you for being such a bright light in an often dark world!
You love Jesus, Jonah. You talk about Him and ask about Him and credit Him when good things happen and when your boo boos heal. You know that one day we will all go live with Him and you won't have boo boos anymore. And you know that He lives in your heart and takes care of you... of our whole family. Your tender heart and love for Him is the greatest gift I could think of. So even though EB is hard and your "normal" is so much more complicated than most kids your age, you have come through it all with an amazing, resilient little spirit.
When you were born, we were so sad and scared and uncertain of your future. Many days all I could do was live in fear for your future.
Would you live? Would you have friends? Would you get married, have kids? But as time has gone on and we see how amazing you are, how wonderful you are IN THIS MOMENT, it's easier not to worry about your future. Because God is on your side, Jonah. He has called you by name, and you are HIS.
His hands are on you and I am certain a legion of angels still protects you. We are confident of your future, Jonah. Sure that God has a great purpose for your amazing life... knowing that He is not done with you yet.
We stand in awe of your life and what God has done every day. We are so thankful for you - for who you are and who you will become. You have a sweet spirit and an amazing heart, and people who meet you are changed, Sweet Jonah. Don't ever lose sight of what He has done and who you are in Him.
Lord, thank you for giving us Jonah. When I was pregnant you know that I prayed, "Lord, let him live so that he can praise you." And God, his little life sings out your glory every single day. You have answered our prayer. You are faithful and ever present and so clearly obvious in Jonah's life and in our family. We will always give you the glory for who you are and what you've done. Thank you for an amazing four years.
Today you turn four years old... and what an amazing four years they've been. Jonah, we didn't know if we'd get even one year with you and God has given us an incredible FOUR! You are probably the most affectionate, compassionate, caring child I have ever known.
When people are hurting or upset, you are hurting and upset with them. When I told you a few weeks ago that your baby brother was sick, you burst into tears and cried, "But babies aren't supposed to be sick!" That's your heart, my sweet boy - constantly thinking of others.
You could dwell on your own pain and boo boos, but you don't. You focus on the fun and joy in life. You pray for others and then ask about them days later, when we're not even talking about them, wondering if they're doing better.
We could not ask for more, Jonah. Of course we pray for your healing and that God would take your pain away. And we will continue to ask and have confidence you will one day be healed. BUT, the struggles you've faced and the pain you know has made you who you are, and we couldn't be happier with who you've become.
You are so sweet and kind, but on top of those things, you have a silly, funny little personality that goes along with a smile that lights up a room. You keep us laughing and we DAILY recount stories to each other of the hilarious things you've done and said. Thank you for being such a bright light in an often dark world!
You love Jesus, Jonah. You talk about Him and ask about Him and credit Him when good things happen and when your boo boos heal. You know that one day we will all go live with Him and you won't have boo boos anymore. And you know that He lives in your heart and takes care of you... of our whole family. Your tender heart and love for Him is the greatest gift I could think of. So even though EB is hard and your "normal" is so much more complicated than most kids your age, you have come through it all with an amazing, resilient little spirit.
When you were born, we were so sad and scared and uncertain of your future. Many days all I could do was live in fear for your future.
Would you live? Would you have friends? Would you get married, have kids? But as time has gone on and we see how amazing you are, how wonderful you are IN THIS MOMENT, it's easier not to worry about your future. Because God is on your side, Jonah. He has called you by name, and you are HIS.
His hands are on you and I am certain a legion of angels still protects you. We are confident of your future, Jonah. Sure that God has a great purpose for your amazing life... knowing that He is not done with you yet.
We stand in awe of your life and what God has done every day. We are so thankful for you - for who you are and who you will become. You have a sweet spirit and an amazing heart, and people who meet you are changed, Sweet Jonah. Don't ever lose sight of what He has done and who you are in Him.
Lord, thank you for giving us Jonah. When I was pregnant you know that I prayed, "Lord, let him live so that he can praise you." And God, his little life sings out your glory every single day. You have answered our prayer. You are faithful and ever present and so clearly obvious in Jonah's life and in our family. We will always give you the glory for who you are and what you've done. Thank you for an amazing four years.
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