Sunday, May 17, 2009

sweet jonah





84 comments:

Mike and Molly Spivey said...

He is absolutely precious! What a sweet baby boy!

Erin Hingley said...

Look at those beautiful lips! He is completely perfect, Patrice! Hope you all had a great weekend:-)

Love,
Erin in va
youmeandwipee.blogspot.com

kelley said...

what a beautiful baby!!!
Kelley

Kristin said...

Sweet little burrito! What a cutie!

brightleigh said...

Hey Jonah, how ya doin? He looks like he is waving at us in that last picture. Good to see you guys are swaddling...sometimes I wish I could still swaddle Seth. Jonah is growing--enjoy each moment--they pass very quickly. He is beautiful.

Karen said...

Jonah is just precious!!! Know that God has blessed ya'll!!

clover's mama said...

awww bless him. i love jonah, so sweet and beautiful. you are very lucky.

Beav's Wife said...

HE'S SOOOOO CUTE! He's really getting big too...they grow up too fast.

Kaleena said...

Bless his little heart! I know that looking him with so many blisters must be very difficult for you (to say the least) but please know that he is simply gorgeous anyway! I am so sorry that you all are having to go through this, and SO VERY sorry that sweet Jonah is having to endure EB and the pain that must surely go with it! I am a first time commenter and just wanted to let you know that your family is in my thoughts and prayers.

Anonymous said...

what a precious little jonah you have there he is soooooooooo cute.

Julie said...

Mr. Jonah is VERY sweet indeed!

Jill said...

Patrice - thank you for sharing. I do want you to know that I focus in on the sweet expressions or the little pouty lips. Keep doing what you are doing to bring awareness to others, and know that we are all praying for all of you.

courtney said...

sweet, sweet baby! he's just a doll!

Nora Lee said...

Just like his little blanket says; he is a "Cutie"! I got my magnet and love it.

nancy said...

Jonah is such a big boy! Very proudly showing off my magnet on the back of my jeep! I love it and all of YOU:)

"Au-Me" said...

Miracle Blanket for Miracle Baby Jonah. Sweet photos!

lifelaughsandlove said...

Gotta love the Miracle Blanket :) He is so precious. My heart breaks that he has to be in so much pain with all of his blisters, but when I look at him I see a strong, sweet little boy and he puts a smile on my face. He is so cute!

Robyn said...

Patrice,
you are truly an amazing woman to be chosen to be this little sweet baby's mama!!! I know in your last post you said you are not, and I am sure you have your flaws, but you are walking a road that most of us never will, and I admire you...on your good days AND bad. He is adorable.

Kim said...

Bless his sweet heart. He's so handsome and looks to be at peace, despite his blisters. He looks like he might look like his Mommy?

Just'N Angel said...

I just love his sweet eyes and cheeks. I know it must be hard to see those horrible blisters. He is such a precious little one.

Anonymous said...

What a sweet little face! He is so precious ;)

Emily Eggebraaten Photography said...

i (heart) the miracle blanket!! Jonah is so cute in it - he should be a spokesperson!! We are continuously lifting your family in prayers..

Emily in SD

Happy and tired said...

I am praying for you.

My he has gotten so big! And I definitely think he looks like his mom! What a hunk. I am sure it is excrutiating to seem him like this but he is a gorgeous boy!!

Peace to you.

Patyrish said...

Those piercing blue eyes and angel face get me everytime.

He's amazing.

Laura A said...

I was so hoping you'd post some more pics soon - I needed a Jonah fix! :)

He is such a sweet baby - still LOVE those eyes! Is his hair a little bit red? It looks like it has a reddish tint in those first few pics.

Thanks for sharing!
Love,
TX Laura

Alex(andra) said...

Can't believe how big sweet Jonah's getting already! So, so handsome, too!

Niecey said...

Bless him. He is SO gorgeous and handsome, and it hurts to look at his scars and sores.

He really is so sweet. So perfect.

Jenifer Parris said...

He is such a SWEETHEART! You just want to steal a kiss! Get one for all of us out here in cyber space!

I know how I felt when my little ones had just a little scratch, dry scalp...I thought the world was coming to an end and it was all I could see when I looked at them. From one Mom to another, know that when I see pics of Jonah, I see what a BEAUTIFUL boy he is, just the way he is.

Girl you just keep loving on that little one...blisters and all...he is going to grow up to be such a kind, compassionate man because he will understand others and their pain.

Anonymous said...

Love the WAVE!!!
He's gonna be a hit at the DEACON Games, have you thought about playing the WFU'FIGHT SONG' during dressing change?
Maybe a video of NAZ T DEAC will put a smile on everyone' face........
2shoes

Jenny Hintze said...

That's a cute kid!

Anonymous said...

Is there anything sweeter than a baby sleeping in a miracle blanket? My son outgrew his a couple of months ago, so your photos bring back sweet memories.

I will be praying that his blisters heal quickly. I'm sorry he has to endure them, but he's beautiful regardless.

Abby said...

I am kind of new here, although I have been praying for you guys and Jonah for a month or so. Im so glad he is home with you, but sorry that you have to deal with all of this EB stress on top of the normal new parent sleep-deprived, ready to scream stress...I have one question- how do you deal with the blisters on his eyelids? I know you said he is banging the heck out of his face, but I never thought of blisters on his eyes...doesnt it make you a nervous wreck to drain them?

the 'Bling family said...

Good Evening, Patrice!
Thanks so much for posting pics of your son- I just can't get over how much he looks like my little guy- piercing blue eyes, soft, light hair!
God is amazing in how he creates each of us individuals- I hope that more and more people can see past the blisters and bask in the wonderful creation that your little Jonah is!

Psalm 139:14
I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.

Sara Jo said...

Jonah is so beautiful.

Dear God, please bless Patrice tonight with a peace and comfort that only you can provide. May she wake tomorrow refreshed and eager to experience your love for her and her sweet family. Amen.

Shannon said...

So here's the deal. In my most humble opinion. He is gorgeous. When you are feeling abandoned by God, just look at your son. His face is full of God. That sweet baby boy doesn't know that you are scared, and that you hurt for him...but he does know you love him. He knows that his mommy and his daddy are where he is safe and fed and cared for. He knows that when he cries, you do your best to comfort and soothe him...and that is enough. As mothers we don't want to see our children hurt, so we do everything we can to shield them from that hurt. You do everything you can to shield Jonah from hurt...and that is enough. You love that baby more than anyone else in the world...and that is enough. Jonah sees your smiling face looking back at him, your eyes full of care, compassion and love...and that is enough. You are enough. So, fair...no. No way. No one should have to endure what you do every day. Not to mention the torture you went through with Gabe. Would I want to walk in your shoes? Not for a second. But would I if I had to? In a second. God knew how hard this would be for you. He knew that there would be moments and days where you feel scared, alone, angry and full of hopelessness. I think God also knew that if Jonah were your first child, you may have broken. But Gabe came first. Gabe, as big siblings often do, paved the way for his baby brother. Gabe came to say "Mommy, Daddy, I love you and I know you love me, but I can't stay here. I just wanted to tell you to be good to my baby brother." Without the heartache of losing that precious little man, what you are enduring now would seem like the worst possible outcome. But Gabe came first to strengthen you for what was to come. You are not forgotten, you are not alone. This is your journey and your battle and your lot...whatever you want to call it...but so many are cheering for you, supporting you, loving their children more because of you. I won't give you the cliche "you're an inspiration" line. You're a mother. You're a great mother. You're an unbelievable mother...and that is enough.

Jennifer said...

Praying for Jonah as always, and saying a special prayer for you and Matt. Praying that you feel the love of the Father as He wraps his strong arms around you. That you will awaken tomorrow refreshed.

Hugs from Boone. Oh and in case you were wondering, Jonah is so handsome and perfect :)
____
This blog really brought encouragement to me and I thought I would pass it on. Remember, Don't look back, keep pressing toward the goal.

http://dannyfranks.wordpress.com/2009/05/15/dont-look-back/

Carrie said...

Thank you for sharing pictures of your beautiful little boy! I just came across your blog tonight (I friend suggested it to me, as I also have a daughter with a very rare and fatal disease).

I will keep all of you in our prayers. Though my daughter doesn't have EB, I do understand the stress, fear, and chaos you may be feeling. If you want someone new to talk to, I'm here for you!

Julie MacFarlane-Barrow said...

Hey handsome! You are getting more beautiful by the day! Love you lots, xxxx

Kelli said...

Could he get any cuter? I think not!!

Maryellen said...

Oh Jonah you are a treasure.
You are growing so big.
Each time your Mommy posts a new
photo you seem to have grown !
I pray for blessings abundant for
you dear sweet boy !
Maryellen

Anonymous said...

All I can say is WOW !!!!!
Jonah GEE GEE could just eat you with a spoon you are to Cute !!!

Patrice I love you
Remember this season will soon pass.

Praying for a healing
Praying for peace
Love Gina

Angela said...

He is such a sweet baby. I love it how he's waving in the last pic.

Oh, and we *love* the Miracle Blanket here. I call it the Baby Straight Jacket. LOL

Mandy and Russel said...

You know, I can never tell which parent babies look like when they are first born but not that Jonah is growing up a bit, when I looked at this first picture I could see a resemblance to you Patrice.

What a sweet baby :)

Anonymous said...

So the one answer that I haven't really seen anybody give- that I know to be true, is that God did NOT do this to Gabe to you and Matt, to Jonah. He is good, but His power is limited. He not in control like most Christians think. He is limited by nature, by humanity, by evil. He is powerful, His love can get us through anything. All things can work together for good for those that love Him. And Love ultimately triumphs. If you understand this you won't be angry or confused anymore and you'll be able to cry out to him for the grace that is there to help you deal with life- which is often unfair and painful.

Your son is beautiful!

Shelby said...

Sweet sweet baby boy! We are right down to road from you in High Point. You are in our prayers!

Beth said...

So very sweet! He is absolutely adorable!!

MelH said...

Every time you post a new picture of Jonah he steals my heart all over again. Thank you for a much needed dose of Jonah Baby!

val said...

what a scrumptous looking baby boy burrito! I so want to scoop him up & give him a big hug..but I won't..lol

{{hugs}} to all

Misplaced Country Girl said...

I can't believe what a big boy he is becoming. He is just as cute and precious as ever.

Anonymous said...

he looks just like you, very cute.

Patti said...

I just love this little boy. Jesus, protect his sweet skin and make it whole and new again.

purejoy said...

after yesterday's post, i wish i could come there and just sit with you and listen. to avoid being the "fixer" is so not easy for me. i hear your pain, your anguish and your frustration. disappointment. grrrrrr.
i know.
i can't put myself in your shoes entirely, and i don't know what it's like to have a child so severely comprimised.
i hate that your "normal" is so not what you were dreaming for.
cling sister. there are going to be days like these. cling and hold on for dear life.
your sweet jonah is beautiful. he is. and even with your nicks and blemishes (ie your self-described unholiness) you are precious in his sight and he will lift you up.

Lorraine-bo said...

Wow, his little face just keeps rounding out more & more - sweet! :)

I'm guessing that the warming temperatures aren't helping with his blisters, but I will keep praying. I also still think that I could just eat him up, he's so sweet!

He looks happy ... he looks well-loved :) ... he looks like he's waving in the last pic :) ... and he looks like his hair is getting thicker - he's precious :)

Anonymous said...

What a sweet face.. I love Jonah. He looks a lot like his mommy. He's handsome and BRAVE. He looks happy too, he was made perfectly. Do you know I love Jonah? o ok, just checkin'
Rachel from NJ

Kirsten said...

ohhh... what a beautiful boy... i just wanna kiss his little head.

Meredith said...

I got my Jonah magnet today!! It looks wonderful!! I am so excited to post it on my fridge! This is my first comment but I faithfully read your blog. Thank you for keeping us all posted on Jonah and your family. I think of you guys often and keep you in my prayers! Jonah is such a cutie!

Melinda in Ohio said...

Jonah is just a precious little doll. Even with all his blisters, he is still adorable. I wish he didn't have to deal with all of this. He, and you, are in my thoughts and prayers.

Anonymous said...

Jonah is too precious. God has blessed you with him because he knows you can handle it. Enjoy every minute of it. They grow up way to fast! I'm praying for you guys every day and for the healing you all 3 need.

Anonymous said...

Oh, he's just a doll. God bless this sweet baby boy!!

Meredith said...

What a beautiful baby boy... I can't believe how much bigger he looks....

I was checking your blog at work, my head bowed in prayer when a co-worker came up to me and asked who he was.... I explained to her about EB in my totally uneducated way, encouraged her to check out your website and went on my way... later she came up to me and said she had never seen such a beautiful boy. And I totally agree! I can't imagine how hard it is for you to see those blisters all over him, but please know he's beautiful/handsome anyways. Everyone can see it. Always praying, God Bless!

Anonymous said...

What an absolutely perfect, adorable boy.

Love and prayers from Summerfield, NC

Anonymous said...

I have to say he looks a lot like his Mommy! He's precious.

Claire said...

Just look at the intelligence in those big baby blues! :-)

Cxx

Laura said...

He's so precious! My heart breaks that you are going through this though - what a strong family you are! Don't you just LOVE Miracle Blankets? My second son was a swaddler and I love these! I pray that things get better for Jonah and that you continue with your strength as a family.

yadkinriver said...

What a handsome little boy. He looks like you Patrice. So sweet.

I will continue praying for you, Matt, and Jonah.

dg darling said...

Just so adorable! Those blue eyes get me every time!

Katie said...

Love you sweet baby boy! :-)

momma said...

he looks like he is waving at us in that last picture. what a sweet boy!

Anonymous said...

This is one of those times when a picture speaks a thousand words. You're right. It is terribly unfair to him and to you and Matt. Yes, this is not the way you want your baby to look. It's ok to say that. It's ok to want his perfectness to include healthy skin. I don't have any words of comfort but I hope that having your feelings acknowledged might help. So not fair.

Kelly said...

Patrice:
I won't tell you that you are an inspiration. I won't tell you that you are wonderful (although I think you are).
I will tell you that Jonah is precious. I will tell you that I have you on my mind every day and I don't blame you for a second for having a hard time right now. I would too. Anyone would. I will tell you that I pray every day that God gives you strength, peace and most importantly JOY. And I know a new baby can be a stress on any marriage .....add in extra conditions and it's tough. Stand strong together.
You are a GREAT mom.

mkaylindsay said...

He is soooo Cute!!! What a little gift!!!

Anonymous said...

Patrice, I have been off the computer and out of the loop. I have seen the sweet boy and the wave and the sweet face. I hear your pain. I really do. Most of this is the "normal" sleep deprived, "what has my life come to?" mess we deal with but you DO have so much more. You do. Please find time for yourself (to read your Bible and to pray and to relax). God is there. I know you know this. I will take the burden from you and pray for you the prayers that you do not feel that you can pray at this time. Please know that we are ALL SINNERS and SAVED BY HIS GRACE. I am just as sinnful as you (you can't win this one!) and I am a child of God just as you are. Hang in there. You are in a spiritual desert but the waters will come in God's time. Praying for you! Jennifer in Southeast, NC

Stephanie said...

He's precious!!!! Absolutely precious!

Beth said...

What a sweet boy!! He is beautiful and perfectly made by God!!

Thanks for sharing the great pictures!!

Anonymous said...

He's Gorgeous!
Scrapes and all. Right now is the toughest time- when he does not understand about scratching his face up. My baby does that alot and she does not have EB. In time you'll come up with some ingenious new inventions to help him with all the different stages I'm sure:)
He is SO precious and thanks for the pics of him. I am praying and believing for his healing.
Carlee

unzen said...

Praying for inter peace and healing for you all. God Bless.

Ryan said...

I love pictures of sleeping babies!!! He looks so long!!! Such a cutie!!

Amanda said...

Wow, he's a cutie. :)

Amber Schmidt said...

There is absolutely nothing better than sleeping baby pics! He is just a doll!!! And I SEE MITTENS!!! Praying that is going well for him!

crazymom said...

He is so Beautiful! Thanks so much for sharing him with us!

Martin Family said...

He is adorable! I love seeing pictures of him! I hope those on his face have healed up already. Those are hard to see on such a sweet little face. He has grown so much though. And he has such a perfect face, so healthy and beautiful.

The Happy Housewife said...

Jonah is such a beautiful baby. I am not sure if I should be calling a little boy beautiful but he is! Those eyes, that mouth! So sweet!
Toni

Anonymous said...

He's growing so fast! He's SO beautiful!

amanda said...

Hi to you to Jonah...you are soooo precious! and you sure know how to work that camera!