Sunday, May 3, 2009

jonah's face

Jonah is looking really rough right now as far as blisters are concerned. The pictures I posted two days ago were not from two days ago. They were from early last week. I'd love to say that his face is the only bad spot on him right now, but unfortunately he's having a hard time in other areas too. His ankles and feet are broken down again, the back of his right leg bleeds every night during dressing change, he's got new blisters on his upper thigh on that same leg, and still has the bad one under his armpit (although it's looking much better). His face and ears are BY FAR the worst, getting new blisters every day, sometimes getting new ones from hour to hour.

It breaks my heart.

I guess I thought when we left the hospital, and he was improving so much, that if I just took care of him a certain way or bandaged him well enough, that I would be able to control and prevent them. I'm so frustrated to learn that this is most definitely not the case. They are not cause and effect like I expected. Half the time I have no idea why he got a blister a certain spot, and as far as his face is concerned, there doesn't seem to be any way to prevent them. I don't know if it's the warm weather, the fact that he's getting stronger and is moving his head around more, or something else. But it's bad. It's sad. And I hate it. I won't even take him out when he looks this bad, because I don't want to have to answer any questions. I know I'll get over it, but this is the first time it's been so obvious - just by looking at his face - that something is really, really wrong. I just don't want to have to explain.

Please pray for Jonah - that he will adjust to the warm weather (I don't know if that's how it works - we are trying to keep it cool in the house, but it doesn't seem to be helping), and that his face will quickly heal and will become more durable... or at least that we'll figure out a way to keep it from getting so bad.

He's still beautiful though. Sweet boy.

Friday, midday.

Saturday, midday

Saturday night

This morning

162 comments:

Erica said...

He is BEAUTIFUL and PERFECT just the way God made him!

Joy said...

He is so sweet, he looks like you Patrice. I will keep him in my prayers.

the Hot Biscuit :) said...

He has the most beautiful face. So sweet. I am sure he must melt your entire family's heart.

We will pray that, whenever you are out with him, people are loving and kind.

Jodi said...

Oh, this breaks my heart too. Still, he is so sweet. Will be praying.

Amber Schmidt said...

Praying that his little body will be on the mend soon and that this is just a flare up that will soon cease. Hugs ...

PS... he is still just as gorgeous with or without the blisters... please do not ever feel like you cannot post pics of him because of a bad blistering day! His eyes say it all to me! He is just an absolutely blessed soul and it does our hearts good to see him!!!

Jessica K. said...

I am praying for some quick healing. I am praying for you guys. I know all this will make you so much stronger and bring you a lot closer to the Lord.
He is such a cute little baby, he looks so happy in the pictures you post of him, he doesnt looks sad or mad or as if he is suffering. He is such a precious boy and I will be praying for him, that his face will heal quickly, that you guys will find a way to prevent these blisters from showing up. I will pray for him to be come stronger and his skin thougher.
He is such a handsome little guy. I hope you guys can have a nice sunday!
Much love to you!

CHATTY CATHY 1975 said...

I feel horrible for him JUST because I can't stand to see anyones baby in pain. As for looks - he is STILL gorgeous - and I'm still keeping Abby open for him!! (she's 7 months old and therefore an "older woman" which most men like! LOL)

Enjoy your Sunday and know that you are ALL in our prayers daily!

Queen Mumma said...

I agree that he is beautiful and perfect just the way God made him as Erica wrote.

People are cruel and quick to judge. While this is all new to you, you will adapt. You will grow tougher emotionally.

I hope you can find the courage to live life normally. Jonah needs that. He needs normal.

I experienced a little bit of what you will be going through. My daughter had severe eczema on her cheeks as a baby. Yes, I would get stares and comments. Yes, they hurt but I got over them.

There will always be rude people but there is also a lot of caring people.

Yes, you will get stares but it will soon just be a part of your life.

I am praying for Jonah and for you and your husband.

You are so blessed that God gave you such a sweet angel. Take comfort that all things have a reason and purpose in life.

Stacy said...

God Bless your sweet baby boy, Jonah. He is absolutely beautiful. You can just look in his eyes and see such a sweet, gentle soul. Never forget that!

Lesley said...

Such a little sweetheart. Having a 'special child' myself, it will take time for you to feel comfortable taking him out. Others will stare and children will ask questions. But it will be OK. You will get stronger with time and believe it or not, will eventually welcome the questions as it will give you a chance to teach others.

For now, just go one day at a time. He is a lovely little boy.

kimmie said...

Patrice, he is adorable (and yes, looks just like you!), and I hate that his skin is so fragile! Honestly, people must be living under a rock to see you guys out and ask what is going on with Jonah, because surely you all are currently the most "famous" family in little winston-salem! Not a day goes by when I don't think of Jonah--praying for you guys! ~Kimberly(Randolph) Waller

Jalita* said...

He is still absolutely precious and handsome...... but my heart does break for you.

My 4 year old, Dylan, is viewing this with me....He wants me to leave a message from him, so this is his exact words..."I saw you on the computer, and Im sorry you hurt. Im going to pray for you and hope you heal soon" He also told me Jonah was cute!

Anonymous said...

You seem like a pretty hilarious person - I'll bet that with a little more time you will have a snappy comeback for people who make dumb comments that makes them rethink the way they approach strangers! I have been so impressed with the way you handle thoughtless commenters in your posts, and it always makes me giggle and think "GOOOOO Patrice!"

I have a feeling you are going to pass this trait on to Jonah, and it is going to serve him well in this life. Blisters be d*mned!

Anonymous said...

I agree, Jonah is PRECIOUS!!!!!
Still praying in Louisiana.

Becky

Nicole said...

Jonah is precious. Jonah is perfect just the way God created him... I am sorry for peoples' comments - sometimes I think people just don't know what to say... You are an amazing woman - and I know you'll raise Jonah to show grace to others while standing firm to what you guys believe. I'm praying for you as these hot, humid summer months come. Hugs from Indiana!

Emily Kate said...

bless his little soul! He is such an adorable baby! Praying for sweet Jonah!

courtney said...

Poor baby has had to endure so much in his short little life. He is so beautiful, though. And, I know you are one proud momma--he's precious!

Kirsten: said...

Poor little guy! He is still cute as a button! Hoping and praying his blisters adjust to the weather change and heal quickly.

Outnumbered by 3 Stooges!! said...

I pray in Jesus name that he wouldnt be uncomfortable and that they well heal up quickly, bless him, he is so loved by God. If we are evil and can love someone so much and I havent met him, imadgin how much he is loved by God. Bless you!

Shari said...

I agree! He is beautiful and perfect! What a cutie! I continue to pray for him.

Anonymous said...

Jonah is absolutely beautiful. He has the most gorgeous eyes and he really is a gift from God. I continue to pray for him each and every day.

nancygrayce said...

Patrice, he is beautiful! I remember so many times people looking at my youngest with obvious facial deformities and knowing they wanted to ask, but didn't. I almost wanted to explain every time, like if they knew it would be easier.

I agree that he looks so much like you! Those beautiful eyes.

Jane said...

He is still so precious Patrice, most people can look beyond all those blisters and just see what a beautiful little boy he is. I am sure the more active he gets, the more he will have and there is nothing you can do about that. And work on some comments you can give those ignorant enough to ask. LOL I am sure you can put them in their place. I will be out of town this week, but Leigh will keep me informed, so I will not be commenting. Have a great week and love on that little guy all you can. Will coninue to pray for all of you, especially beautiful Jonah.

Michelle in Va said...

He is still such a cutie pie. I can't say I know what you are going thru, because I have no idea, but I know what it is like to love your child more than life itself. I have a 19 month old who is the center of my universe and can't imagine seeing him in pain, like you do your son. Just know I feel for you, one mommy to another. Please cherish each and everyday with your precious son, they grow up so fast. Each child is such an amazing gift from God, blemishes and all. Thank you for allowing us to love your sweet son too and your beautiful family!!! God is so good!! Much love to you all. Continuing to pray each and every day.

Lucy and Ethel said...

Being out in public with Jonah would enable you to pass out cards about EB - to anyone who asks or anyone who gawks (let those who stare be the ones who feel awkward; you and Jonah have done nothing to warrant it)! Make them yourself (or have someone else do it) with an irresistible picture of Jonah and some of the alarming facts about EB, along with the DEBRA site and your blog address so they can follow Jonah's progress.

God knows exactly what He's doing even tho we question His rationale at times. By giving you (who possesses a quick wit/creativity, a substantial dose of mama determination and faith, intelligence, and a gift for writing) a gorgeous baby with a hefty challenge, He is also giving you permission to be an educator... not only about EB, but of tolerance, compassion, and unconditional love.

It may not be easy at first, but you've got a dedicated group of supporters right behind you! And a huge motivating factor is your beautiful little guy :)

Lucy

jennifer said...

hang in. it does suck, and heat and humidity will not be jonah's best friends. it just is. blisters happen. they can be so extreme some days that it catches folks off-guard, even the most well-intentioned. it just is. there's no shame in deciding now and then you just don't care to step out and deal with it. i'm glad you don't feel you have to sugar coat the realities or your feelings about them. and post those pictures of one cute baby, blisters and all. it will be such a source of strength for jonah. kids tire of being 'inspirations' or 'little miracles' or 'beautiful (anyway)'. it's nice, but on the whole kids just want to be treated like kids. that means being able to just sit and talk about how crappy blisters can be as well as bad-hair days and that unexpected pop quiz that made you wish you'd stayed in bed that day. just have someone listen and really get it. and then move on. joke about how cool it is that your entire class LOVES you because you get to have the a/c wall unit in your classroom while the rest of the school building goes on sweating. as always, we hold you up in prayer as you navigate this untraveled road. you are doing SO WELL.

The Mind of a Mom said...

Oh my gosh his face in those pics makes me cry for you and him! Be strong ~ prayers are being sent your day and for Jonah
Take Care
SoccerMom

Sonja said...

Jonah is so sweet! Hope he gets some relief from the blisters soon. He is such a cutie!

Anonymous said...

Continuing to pray. Jonah is a hansome baby. He was made in Gods image and reguardless of blisters he is hansome.

Anonymous said...

He really is incredibly beautiful. He's in our prayers.

Melissaak83 said...

He is a cutie! I will pray for quick healing and for Jonah not to feel pain from his blisters.

He is BEAUTIFUL!

Cathy said...

When I look at him, I see a precious, beautiful child of God! He is sooooo cute!! I am so sorry you are going through this and I pray for you and Jonah all the time!
Keep the Faith!!!!

Michelle said...

Jonah has the most beautiful little face. And his little cheeks look to be plumping up a bit! When you look into those big blue eyes, it's hard to see anything else.

Blessings!

Anonymous said...

Patrice -

I know you've probably seen this before, but in the off chance that you haven't, here is an article about an experimental bone marrow treatment used to treat little ones with EB: http://www.startribune.com/lifestyle/health/19471139.html

Jonah is beautiful, and although I have never met your family, my eyes welled up with tears when I saw the new pictures you posted. This little guy deserves every chance he can get.

Danielle

our family said...

Praying for his face to heal. He is still very beautiful.
Hugs and Prayers
Rachel in PA

Barbara said...

Dear Patrice and Matt, Thank you so much for having the courage to share with us. We see the beautiful boy behind the blisters and we love all of you. I pray for healing. Barbara

Melissa said...

Jonah certainly has gotten a head of hair these days! He is so precious. I just love him more with each picture you post.

I don't know if you can use this on Jonah or not, but when I had a kidney removed as an infant, my mom used Vitamin E straight from the capsule on the incision to speed healing and reduce scarring. If you do try it for Jonah's owies, go for natural, not synthetic, Vitamin E. I hope it helps.

Thank you for the pictures and update. Still praying in New Mexico.

Jill said...

Patrice,

My heart breaks with you and as I read all the comments I echo some of the same thoughts - he's beautiful, you're courageous and this sucks.

You will be able to handle this - even when everything seems insurmountable. I know you and your raw and honest faith.

The three of you are very loved.

Jill

Watts Family said...

We are all still praying for you! He is still adorable and true beauty is what is on the inside anyways. Keep your head up...Jonah is so strong and such a fighter. You must be one proud momma! Have a great week.

Many Blessings,

Amanda

Libby said...

He IS still beautiful, but I can understand why it makes you sad. They look so painful! We'll keep praying.

Melissa said...

You're right.. he is beautiful. He has some of the sweetest expressions... could melt any heart! It hurts to imagine the pain he must endure. Praying for all of you.

Janel Waters said...

Patrice - I haven't commented in a while, but I am still here and still praying - our moms group at church said a special prayer for Jonah on Tuesday night.

Whenever I have a big blister my mom always asks "where did you get that blister" - and my answer is always the same "I don't know!". They literally do just come out of nowhere. There is nothing that you can do to prevent them and no way to know when that are going to come up - you are right there is no cause and effect.

Please don't be afraid of taking him out in public for fear of reactions from other people. Let them ask, educate them and teach Jonah that he is perfect the way God created him. Don't let him feel scared or feel different.

Be pissed, be angry, be frustrated - Its all OK! It is unfair and it sucks!

Keep taking care of that perfect little man just like you have been - you are doing an AMAZING job!!

M J said...

Oh, bless his sweet little heart... and yours, too! He IS a beautiful little boy, and I will keep all of you in our prayers!

Holly said...

He has the cutest little face I have ever seen! We will be much in prayer for his situation.

Donna said...

He looks as sweet as ever!! Praying for that precious skin!!

The Dolezal Family said...

Poor baby! I'll pray harder! (I don't think it quite works that way, but its worth a shot, right?!)

Misty Rice said...

Oh it breaks my heart also mommy to see your little boy like that. Not because of the looks of it, because that isn't anything....but because it looks SO painful and he doesn't know why he hurts all the time and there isn't anything you can do about it, so I know it breaks your heart.

Im praying, praying, praying.

Penny said...

Such a sweet boy, I know it breaks your heart to have the blisters on his face. I am so sad that he is having a rough time, wishes may not be the ticket but maybe prayers are.

Please let Jonah have peace and let people see him for the beautiful boy he is. Please help his parents or science find the key to help him to not get so many blisters......

Anonymous said...

Prayers (many, many prayers) for Jonah and his parents. I feel such love for that little fellow. Thanks for sharing him with us.

The Foster Home said...

Poor baby, but he is still so beautiful!!!

Anonymous said...

He is so cute! His blisters break my heart, and I can't imagine dealing with that every day. You and your husband are so strong, and I pray God lifts you up to keep going. I've never heard of his condition before, and wanted to thank you for bringing it to the attention of people like me. Hopefully, because of your dedication and heroic love, a cure can be found in no time. Imagine, maybe Jonah won't even have to deal with this in a few short years!

Radar's Mom said...

I don't blame you at all for not wanting to explain things to people. Over time you'll find the best and most comfortable way to address questions in public, but this is still all so new to you, so do what works and feels best. And you can show off your beautiful son to us and know that you'll find no shortage of admirers who see the palpable sweetness in your darling boy's face, even on rough days.

By the way, I've got my little one sitting on my lap right now (well, propped on my lap) and at 4.5 months, he loves looking at himself in the mirror and at pictures of babies on the tv, in books and on the computer. When I showed him the pictures of Jonah just now, he smiled just as big as he does with all the other babies (himself included). So count my son as just one of Jonah's buddies who loves him just the way he is!

Anonymous said...

Lucy,Jennifer & Janel said it ALL.
Be easy on yourself.
2shoes

Cristi said...

I am sorry. Lord bring healing.

Raising Olives said...

I know others have said it already, but he is a beautiful baby.

I can understand how your heart aches for your baby. We have had two children with "differences" one developmental delays and suspected autism, the other was injured at birth and left with a paralyzed arm. One of my biggest difficulties was thinking about what other people will think or say and them not being accepted.

I will be praying for you specifically in this area.

Blessings,
Kimberly

Hegarty Family said...

Hi! I have never posted before but have been following your story from the beginning. Jonah is a beautiful little boy. You are all in our prayers! Your strength amazes me. Hang in there!

Tricia said...

I am so sorry for all you have been through. I went through a ton of your blog after coming across it today. I will be praying for your family. God bless.

josh and annie said...

I am praying for you and your family. I have a strawberry colored birth mark under my left eye. When I was little my mom always told me that an angel kissed me and wanted to be sure I always remembered that. Guess what, I am now 26 and I STILL use that line when people ask me what happened to my face! Here's to God giving you a clever comeback for the people that will ask. May you continue to be strengthened and renewed each day.

Barbara said...

Patrice - I am not sure that any blister, any size could keep Jonah's beautiful face from shining through. He is one gorgeous little boy. I pray that these blisters clear and disappear before any new ones come. If they don't, then I know that you and Matt will continue to cover them with love just as you have all the others. Bless you all.

Anonymous said...

Jonah is beautiful!! I see the blisters for a split second and then go straight to looking at his pictures and seeing his bright eyes and to see if he has a smile cracking from his adorable face.

Forgive me if this is a dumb question but can you (or do you already) put neosporin on his owie spots? or should you just stick to the aquaphor.

Kristy

Erin said...

Oh, I'm so sorry that he broke out more, I'll be praying for the little darlin. He is just beautiful, glad that you and your hubby got out for a date night!

Carla said...

Hi! Check your blog almost daily. Jonah is still beautiful!! Yes, he is! And very sweet!

Still praying and will always be uplifting you all.

Love,
Pastor Steve and Carla in Maryland

Darcy said...

Could it be growing?

He is beatiful, he has the sweetest face I think I have ever seen.

valerie said...

It breaks my heart for little Jonah and for y'all.
He is such a beautiful baby. He seems so sweet.
I love seeing the pictures. Thanks for sharing them.
I continue to pray!
Love,
Valerie in Oklahoma

Liz @ Sugarplum Creations said...

Look at how big he's getting, those sweet little chubby cheeks, I love it! He is so adorable, but I do pray that the blisters heal, poor little pumpkin.

Jackie said...

He is BEAUTIFUL! Breaks my heart to see his owies!!

Becca Barnhart said...

Jonah is beautiful, and he is such an amazing, strong little guy. I will be praying for healing on all of his blisters, but especially the ones on his sweet face, I will also pray that these do not leave scars.

Robyn said...

he is so precious and beautiful patrice, and my heart hurts for your heart. May God continue to sustain you.

House of Harlow said...

Patrice & Matt your little Jonah is so gorgeous!! Like a little cherub! We are praying for your family!

Mer said...

He really is beautiful, blisters and all. Hoping he gets through this rough patch soon.

Heather, Stan and the kids said...

We are sorry for his pain...and yours.

Melissa said...

Poor little guy! :( It's amazing though because I can tell, just by looking at those pictures, how incredibly strong your boy is! There is just something incredible about him that shines through, even in pictures. He is such a beautiful baby, and such a miracle too! Praying hard for Jonah.

Melissa :)
www.withasmile.wordpress.com

natalie said...

He is beautiful. I understand your reasoning for keeping him at home right now. Oh, how I understand it. But he is completely beautiful.

Praying for all of you.

Just one question: is he susceptible to infection THROUGH the sores and blisters? Or is his immune system compromised just due to his condition? (Does that make sense?)

EHW said...

Jonah is GORGEOUS!!! With or without blisters... and that's just a plain 'ole FACT!!!

It is so very obvious that Jonah is LOVED and CARED FOR by you and Matt, his WONDERFUL parents!!! God has blessed you with an abundance of patience, Patrice, and a gift for reaching out to others through the honesty of your blog. Ya'll are taking painstaking measures to keep Jonah free from infection and the consistency and extra efforts you take with his nightly dressing changes are apparent and SO VERY appreciated by your precious son!!!

When you reach a point where you feel comfortable answering all of those inevitable questions from curious strangers, here's a suggestion... Keep a stash of EB handouts in your diaper bag/purse/stroller and hand them out readily to those you encounter and simply tell the curious Target shoppers something like... *I'm so proud of my son because he's been a trooper throughout his little life dealing with EB... Here's a handout - I hope you take the time to read it and pray for him!* The handout can be something from the EB foundation or something you type up with a link to your blog...

Much love and MANY prayers from Elaine in Lubbock, TX

dg darling said...

Bless that sweet baby boy. You're right, even with all the blisters he is so completely adorable! I can see how you are frustrated though. I would be too. You are such a wonderful mother. I pray for you each day. Don't lose your cute sense of humor amongst all the stress. I am so sorry that you have this trial to face but I am so glad that I have been able to "meet" you and Jonah and feel your love of the Lord. Thank you for sharing your days with all of us. I'm sure on some days it's just one...more...thing...but thanks with all my heart.

Don, Aimee, Kaitlyn and Kysen said...

He is absolutely beautiful and he has two of the most precious parents that I can think of! I don't know you, but I feel comfortable saying this about you by the way you love him unconditionally! He is really precious and his eyes are just telling stories! Keep up the good work!

Anonymous said...

That poor baby! He is still so beautiful, though!!! My heart goes out to all of you. I can only imagine how hard this must be for all of you. I am so sorry. I will pray that this is the worst, and after this all gets much better and easier.
Kelley

ann said...

Bless you all. He is fearfully and wonderfully made.

Channe said...

Praying that your handsome little man will improve soon!

Nora Lee said...

He is absolutely beautiful. He just melts my heart. I know it has got to be hard seeing him go through all of this, but you are doing so good with him. Still praying.

Twin Mommy said...

Did you see this? Great that awareness is being brought to EB by some big name celebs!

http://www.people.com/people/gallery/0,,20276162_20616305,00.html

the*4*of*us said...

oh Patrice. While he is still one of the cutest little babies I have ever seen, that just breaks my heart. Seeing the pictures helps me to see just how to pray for him. Thank you for sharing him with all of us :)

Kelli said...

My heart breaks for you and Jonah. What a blessing he has been to you and Matt. He is also so very blessed to have a Mommy who loves him so much:)

Susan said...

Patrice: He is absolutely gorgeous! I've said this before, but he looks just like you! I will pray that this "set" of blisters will go away as quickly as they came. Take care!

Lots of love from Wake Forest,
Susan

kirsten said...

Hi! I can't remember where I learned about you guys and your sweet boy, but I check in often with your blog. I am a believer, a wife, and a mom to 2 kids. I pray for Jonah and I pray for wisdom for you and your husband. thank you for being so open and honest in your posts. I can't imagine what you guys have to go through on a daily. Just know you have a friend in Georgia praying for you guys.

anglswngs said...

You have a beautiful baby.

lisa said...

a bunch of us in NYC metro area are praying for him and you and your husband....glad you had a great date "hour"...Jonah is a beautiful angel and I think God has greatness planned for him. He made him very special.

CinderellaMommy said...

Sweet, sweet baby! We'll be praying for you!

Erin Hingley said...

Patrice- my heart aches for you and Jonah. I want so badly for his beautiful face to be perfectly clear, just as I know you do. My prayers are always for a cure, healing, patience, and peace. Tonight I will especially pray for healing. I love Sweet Boy so much and he is never far from my thoughts. Despite any blemish, you can look straight into that face and see stunning beauty. Look into his eyes, and you see his pure, unblemished love for the Lord.

Love,
Erin in va
youmeandwipee.blogspot.com

Laura A said...

This is one of those moments where it doesn't seem as though anything I could say would be the right thing. I will continue to pray for complete healing for Jonah, for minimal pain, and for peace and strength for you and Matt.

Jonah IS a beautiful boy - and I know he is also beautiful on the inside! He has a beautiful mommy, too (inside and out!)

Love,
Laura in TX

Linda said...

Bless your ! Jonah is precious and his personality shows with his sweet smile. Just try to ignore ignorant people who stare or ask questions. He will grow up strong like you are. I will pray that he heals quickly and is not in pain. Just love him and cuddle him as much as you can. Babies are little such a short time, so enjoy him.
Linda

clover's mama said...

he is so beautiful, no matter what. i am praying these blisters heal fast and he adjusts to whatever it is that is making them worse. my 17 month old daughter loves looking at pictures of jonah, he is such a blessing. keeping you all in our thoughts and sending love your way.

Anonymous said...

IM sorry you feel the way you do, but I must admit...he is soo beautiful and perfect. What a heart mealter he is! We will pray his face and other areas clear up, but then again...he is just so beautiful no matter what! He is one tough baby, and you just keep on being strong for him and he will remain strong and be so used to it. Really, those blisters are just a little something that is wrong with him. Just like each of us have a little something wrong with us. He is so normal to me and my eyes. Oh. I love little Jonah, through and through.....
hang in there, please dont be afraid what people thing. There is nothing to be ashamed or afraid of. Ive learned so much from you... and appreciate your willingness to share! God bless u all!
heidi Carrico

Michele said...

He still has those pouty lips! I love his lips!!!

Stephanie said...

Praying for your family!

He's absolutely beautiful!!!!!! in everyway that matters! If people are going to stare or say things then they don't deserve to know someone as amazing as Jonah in the first place!

Have the doctors given you any tips on how to deal with it in the summer? Is there anything they can do for him that will help him or is this just something that there is nothing they can do for him at any point other than to deal with the blisters after they happen.

Noah's Mommy said...

Oh Jonah I love you and I don't even know you. I just want to hold you. Father please be with this sweet sweet family.

Anonymous said...

He is so sweet and beautiful...and he looks just like his mommy! :o) I am sorry he is in pain, and that his face is bad right now. I know how much us moms want everyone to think their babies are as beautiful as we do. He is beautiful, but I understand not wanting to explain. It will make me be more cautious with other babies I meet. Something else Jonah is teaching me. :o)
Blessings-
Laura from FL

Tammi said...

He is precious. I hurt with you, although I don't pretend to even come close to understanding what you are going through. It must be extremely difficult to watch your child endure such pain.

Prayers continuing...

Anonymous said...

Oh that sweet baby! I'm going to pray so specifically for that sweet face tonight!! He just reminds me so much of my little man just by his looks and I just hurt for sweet jonah.
many many prayers being sent up for you tonight,
much love,
daisy (alabama)

as written by Barbara said...

Patrice,
Jonah is a beautiful boy. And I for one can NOT get enough of his sweet pictures. His eyes are the most precious blue, alert, little ones things.
Oh, to live closer to you. You would have to bar the doors to keep me out.
You two are such fantastic parents!!! What a wonderful family you are. Are you three, all up for adoption or long-term foster care??? We would love to have you be a part of "our" forever family. :o)
Praying all the time,
Barbara Lyman
Marysville, WA

Our family page said...

You are right, still beautiful! Makes you want to just scream it to the world so they will all know!

lillymac said...

Although I don't understand EB, God picked you to! Jonah has beautiful parents that always know exactly what he needs. You may not always have a quick fix, Jonah already knows you are there for him. God perfectly planned Jonah and his purpose will be revealed to all of you, how amazing is that! I know you are so exhausted to say the least, but know you have a circle of prayers behind your family. Can you even remember what life was like before Jonah? :) You are one awesome mother already... let that set in and take pride in it. I have two of my own and hate to admit that I take their perfect health for granted and then you remind me... if all us moms could be more like you! :)

Anonymous said...

Bless his heart - he is a BEAUTIFUL boy. Anyone who can't see through his illness has serious problems.

Question:
I noticed that it looks like you use Johnson's Baby Bath from one of the photos. In my experience, that is not necessarily the most gentle product - I wonder if the heat is making him more sensitive and a different soap would help? I fully admit I have NO EB experience and not authority to give advice. However, my daughter has eczema which is made worse by heat and while Johnson's was fine for her in the winter, we had to change to Cetaphil in the summer and have been using ever since - even on her hair. It comes in a bath bar and liquid - don't waste your money on the liquid, the bar works better and lasts longer. Might be worth considering.....
As always, I continue to pray for healing and strength. You are an amazing family with a beautiful son.

Anonymous said...

My one year old daughter had a pair of glasses provided by the state. They were pink, round eyes and thick plastic and because they weren't exactly the right size (it's hard to fit a baby!)the ear pieces poked out too far beneath her ears. She looked like a baby dork but she was a beautiful dork :) Anyway shortly after we had gotten them a lady at Target made a very rude comment about how ugly her glasses were and before I could even say anything her teenage daughter told her mom to shut up and that our baby was adorable! My daughter has many large and disfiguring scars on her chest and tummy from open heart surgeries and procedures. She's even missing most of one foot and and some toes on the other foot but none of that will stop me from taking her to the pool. I have thought about this for a long time and how I would react to people's stares and comments. I'm proud of my daughter. She is a survivor and a joy. I'm sure I'll have my off days and tell people where to stuff it but I hope to educate them and have them see her for what she is. Beautiful.

The Happy Housewife said...

Patrice,
Jonah is a beautiful baby. My heart breaks for him that he has to experience the pain of the blisters. I started reading your blog after you won the cloth diapers from MckMama and shortly after that I ended up having a preemie baby that spent a very short time in the NICU. This is my 7th baby, but the whole NICU thing was totally overwhelming. I can't even imagine what you were/are going through. Please know that I pray for your family daily and think of Jonah often. You are doing such a good job as Jonah's mom and are a wonderful example to the many people who read this blog (as well as the people who know you in real life I am sure).
Hang in there, the Lord has a wonderful plan for little Jonah!
Blessings

the-mommy-person said...

The most beautiful baby boy. Love to you.

Cassidy said...

Praying for you from Kentucky.

Megan @ Hold it Up to the Light said...

Oh that sweet precious boy....I know how it breaks your heart to see them like that. I pray for you and your strength, and for little Jonah's skin to stay clear. I am so sorry that things are so rough right now. I am sooooo so sorry.

As for the going out....I know a little bit about what that feels like. My baby has a birthmark that requires aggressive laser treatments. It is on her face, and post-treatment looks horrible. I get terrible looks and one lady actually said "What did you DO to her!?" It was all I could do not to snap back with something like this....

"Well, I burned her with cigarettes....what's it to ya?!"

I resisted the urge, but couldn't believe the harshness of her comments/judgement. It sure does put things in perspective, and make me proud to be her mama....it makes you want to fight the prejudice even harder!!!

Praying for you always, girl!!!

amber said...

Poor baby! We'll be praying for him! He is so adorable!

I'll pray that God will give you wisdom in knowing how to prevent the blisters and how to deal with them when he does get them.

Kimber said...

Poor baby, it looks very sore :(
I'll keep him in my prayers.

Cara McLeod said...

Continuing to pray for your precious and beautiful baby boy and for you and Matt as well. You are constantly in my thoughts and prayers.

Beth said...

Jonah is beautiful, blisters and all! I too believe that he is PERFECT just as God made him!

That being said, I think I would probably feel very much like you do if my sweet baby was having to deal with the pain of daily blisters, stares of strangers etc.

God will carry you through all the tough times, through all the new blisters, stares, and all the questions you might endure! You and Jonah have been God's tools, He is using you for His Good! You have touched SO many lives and I just bet that someday during a conversation in the line at Target, Jonah's story will lead someone closer to God, will touch someone like they have never been touched, and will soften a hardened soul!

Praying for your sweet Jonah...and for you!

:)

Anonymous said...

Jonah is absolutely beautiful with or without the blisters. He is so blessed to have such wonderful parents. Thank you for sharing your story! I appreciate the specific prayer requests and know that your story makes us all a little more sympathethic towards all of the special needs children around and more aware of the challenges their parents are facing. It is obvious that God knew exactly what he was doing when he blessed Jonah with you and Matt as his parents. I can't imagine anyone more perfect for Jonah.

Sarah J. said...

He is gorgeous! I don't comment much, but I pray daily! Praying for a quick adjustment to the heat(or a cool summer! :o))

Anonymous said...

Praying Jonah's blisters heal and a solution is found when dealing with the warm weather and humidity. Oh, Jonah is so beautiful.

Gail
Annapolis, MD

Jenny said...

He's absolutely gorgeous!

Carissa said...

your baby is the sweetest little boy i have ever seen. i just want to smooch him! =) i pray for him daily. such a cutie!

Carol said...

Well, you got me all teared up! Jonah is absolutely beautiful and really growing and filling out. It breaks my heart that he has to have these blisters and pain and irritation, and you, supposed to be loving and enjoying every minute of being a mama....I am sorry for your pain too. I will pray for comfort and solutions for all of you.

Shawna from Round Rock said...

Poor little boy! It is so sad to see him looking so sore, but he is still as beautiful as can be. As a Mommy, too, it hurts to see him with the blisters, but also as a Mommy, it is easy to see past them to see your beautiful son! Praying for Jonah's comfort and fast healing!

Aunt Theresa said...

I'm sure what you want most is to just make it so he feels no discomfort or make it so it doesn't hurt.
i'm not a mother but (been trying for 11 years) but i think that's what i would want the most for my little guy...
praying for you and your emotions!

Anonymous said...

Please know that when we look at Jonah we see...

SWEET
http://tinyurl.com/dxg2yn

BEAUTIFUL
http://tinyurl.com/cnuwpt

FUNNY\
http://tinyurl.com/casn77

\Baby JONAH!\

These pics are how God see's him too. Without his blisters, bandages and pain.

Beautiful boy!

Stars in the sky said...

I have to say, each night when I read your blog my 9 year old son watches as I read. He always asks "is that Jonah?" I of course say yes and he then says "Oh, he is so cute Mom!" So there...I think you would be surprised that he is SO CUTE that he is what is seen first, NOT his blisters. They do not define him, they are a part of a really hard medical condition, but by no means do they define him. You have a GORGEOUS boy and I pray for you and your hubby every day. I pray for Jonah as well. I am so sorry that he has to have this, and as a parent is must be hard to not be able to control it. take care of you too~
I have a son with special needs too, you get used to feeling on display and you will see that there are more good people than there are not.

Anonymous said...

Poor precious little Jonah!! He is so beautiful. Praying for healing of his skin.

C.O.L.E. Prayer Team
http://www.colesfoundation.com
Kathy Stevenson
Alton, IL

Anonymous said...

My Sweet Patrice,
it makes me so sad to see that adorable baby boy having such a hard time of it.
we will have to pray that his skin will begin to get a little stronger every day.
Jonah is very special and I know everyone who meets him will feel the same way when they look into those beautiful eyes.
That sweet boy has my heart, and I look forward to spending time with you both very soon.
I love You Both (and Matt)
Praying for a healing
Gina (GEE GEE)

fulksfam said...

I've got to be honest... those gorgeous eyes still capture my heart immediately. I'm telling you what... they make my heart melt. I don't think anything else can take away from those captivating eyes.

Did I mention that he has some intense, beautiful eyes? :)

Anonymous said...

He is perfect.

Marie said...

When you do find the strength to take him out - just remember every time you explain what is wrong with him, you will spread EB awareness. It's such an unknown disease, so you will be able to do a lot to spread the word. There may be some mean comments, but you just rear up on those protective mommy hind legs and you tell 'em about EB and humiliate them soundly!! You could even get him a little shirt with "I have EB, you're just ugly" or something smartaleccy like that!

Actually there is a site with EB T-shirts if you want the link. One of them says:

I have very fragile skin
And a strong will within
Please don't judge or stare
Show us that you care
Learn about EB
Help the Butterfly Children run free

Nice huh?

ROBIN said...

Your son is beautiful.

APA and NBK's Mom said...

He is too cute for words. I can't believe how big he is getting, his cheeks are even chubby! You have to love some chubby, kissable cheeks!

Beth said...

Oh what a beautiful, sweet boy! God has big plans in store for this little man ~ he has the face of a true warrior.
I continue to pray for you and your family; may God continue to shower you with protection & peace.

Keep the pictures coming, I cannot get enough of sweet Jonah!

Blessings from MI ~
Beth

Jessica mommy to Alex/ RTS said...

He is so beautiful!

rameelin said...

Still Praying for you guys and thinking about you every day. I cant believe how big he's getting! He looks great. I cant imagine how hard it must be to see him like that. Braden (my little guy) has bad eczema which is nowhere near as bad and it tears me up inside to see his skin red, itchy or bloody.
Jonah is so handsome. You're a great mom, Patrice!

Anonymous said...

I have never commented before but I have been reading for a while and I just wanted to tell you that...even with the blisters on his face he is still one of the cutest babies I have ever seen! You both seem like such wonderful parents and he is lucky to have you! I'll be praying!

Toni :O) said...

Awww...such a sweet baby boy and I'm so sorry he's going through this. I continue to pray that they heal quickly. I know people can be so hurtful. We deal with it with my son EVERY single Spring as his excema flares up something TERRIBLE on his elbows. He has allergies and it attacks his skin there where he gets an awful, awful rash with bumps and bleeding. The kids tease him at school (since it's warm he wears short sleeve shirts this time of year so they see it) and it breaks my heart because we do all we can with keeping Amlactin lotion on it as prescribed by his allergist and keeping up with his oral meds. However, I can feel your pain as a Mother when people say hurtful things about your child. They just don't understand and in time, it eases but it will always be hard to swallow. Hang in there and keep hugging that beautiful little boy of yours...he's just adorable!

shoutingforha said...

He is beautiful! Such a sweet little guy.
Still praying for you in Nashville!

Leah said...

He is gorgeous! He looks like his mama! I think that you are doing an amazing thing with your blog. People need to be educated on things like this. I think it makes us more loving, less judging, and much less stupid. I feel sorry for the little guy and I can only imagine how your heart aches for him. He's a trooper! He's darn lucky to have such good parents!

Tracy said...

I don't comment, but I've been checking in since your sweet baby was born and I want you to know that I pray for you each time. Your son is beautiful.

Kassie said...

I've commented on this before but I just wanted to touch on it again. My son has a hemangioma above his eye. I know it doesn't compare at ALL to having to look at blisters on your baby's face but at first it was SO hard to take him out in public and have people stare at him. I felt so angered by it. Now that he's older (9 months) we're used to it and we don't even see it when we look at him. I know that now you might have trouble seeing past the blisters but that won't last forever. I know it's sad but you'll get used to seeing them and won't even notice them.

Jonah is a really good looking boy no matter how few/many blisters he has. I will pray for the ones on his face to heal quickly because I know it probably helps to be able to look at some blister free areas, especially if that blister free area can smile at you.

Constantly praying for your family. I tell everyone I know about Jonah and tell them to pray for him.

Hope James Wilson said...

I wish I could give you a real hug...Jonah is beautiful, blisters & all - he has such an angelic, precious, perfect face :) You are doing a GREAT job as his mommy - as moms, no matter what our circumstances, we do the best we know how! Glad you enjoyed a night out at Logans! Keep on keepin' on...

Nikki said...

Oh, sweet boy. My heart breaks for him. He's beautiful, though, with or without the blisters. The other "posters" are right on... you can see it in his eyes! :) You all continue to be in our prayers... especially those of my oldest son (age 4) who shares your little one's name. He always wants to know how "baby Jonah" is doing, and we check up on you a lot.

Blessings to your family today.

MITZI said...

He is so precious and beautiful. I love his smile too.

Your family is on my church prayer list.

Grandma said...

Patrice,
My heart breaks with yours for all that Jonah has and will have to endure. My spirit lifts every time I see the strength you show, and the humor you share. Jonah is truly Blessed to be your son and part of your wonderful family. I cannot imagine him with parents who could not see past his blisters to the sweet and beautiful little boy who is the real Jonah. I pray for you all-today will send special prayers for healing-and as always, for a CURE!

Alisa said...

Sweet Boy. We are still praying. I'm heading to the hospital with my own little one today for some tests and a good friend brought to my attention II Cor. 12:9. Power in weakness. I just keep saying it to myself over and over...

Goldylocks said...

He is as beautiful as ever!!!

Continued prayers for Jonah.

Samantha said...

He is a beautiful little boy and I am praying for him. My daughter spent 3 months at Brenner's NICU and she will turn 9 next month. Keep the faith and stay strong.

Just Me - MJ said...

I'm so sorry he's still having such skin issues, despite all of your best efforts. He is still absolutely beautiful, though, and his beauty truly does transcend those blisters - it's so obvious in the pictures (even if YOU see them that's not what I see when I first look at his pictures - - his eyes, his mouth, the serene, content, "I'm safe and I'm loved" expression on his face - THAT speaks far more loudly than a few lousy blisters ever could!).

I know first-hand the dread of being out in public with a child who doesn't fit society's standards of "normal" - but eventually, you DO get used to it, you DO go out, and you have a few phrases lined up for those who question you. It's perfectly ok, though, to avoid that on days you're not up for it. Cut yourself some slack and be gentle with your feelings - you deserve that!

We're keeping you all in our prayers here in CT - take care & be well!

Rachel said...

He is perfectly beautiful in my eyes. Blister or no blister, nothing can take away from his natural good looks.

I'm sorry he's going thru this rough patch, but just like the others, they will go away/heal and he will feel better in those spots.

I am praying for him daily!!

Lorraine-bo said...

How heartbreaking for you to have to watch Jonah have new breakouts with potentially more pain.

He still looks like a little angel to me. If I were friends with you & lived nearby, I'd want to scoop him up and kiss that little face as much as I was allowed. He is a precious gift.

With prayers & hugs ~

Stephanie said...

Jonah is so handsome. Such a sweet baby!

Anonymous said...

Your baby boy is beautiful and precious beyond belief.

RZ said...

I wish you could go out and not be met with stares, comments and questions. What is wrong with people?! Ugh. I hope that someday you can go out into the sunshine with your baby and just enjoy yourselves. If people asked questions, I would just glare at them and ignore it.

Carrie said...

He is perfect no matter what strangers may think. Remember God created Jonah in HIS image, so you know that he is perfect. Don't know how you are with natural remedies, but google coconut oil and burns. It is very healing, all natural and is also a natural antiseptic. Maybe it would help heal the blisters on his little face.

Valerie said...

Just wanted to say that he is soooo precious. He looks so sweet in the pictures & looks like he has such a great little disposition through all of this! I'm sorry that he's experiencing more blisters on his face, so I will pray that they heal quickly and aren't too painful for him.

The Redfields said...

Patrice -- Just a thought -- You might consider having some cards printed up (you can get them for only the price of shipping at VistaPrint.com) that have the blog address on them that you could have on hand to give to anyone who asks..... It would be so much easier than explaining it to everyone.....

MelH said...

Patrice,
there isn't much more I can add to what others have already said other then I would just like my own chance to drool over how so precious this baby is!!! I know the blisters do look painful but looking at him smile and the light in his eyes, the beauty of this child is not just skin deep, I agree he looks like his beautiful momma! However, he just has these eyes and peaceful face that light up my heart. Something tells me that this is something Jonah will carry for the rest of his life and will continue to touch people as he gets older and makes friends, meets girls. Jonah is beautiful, plain and simple...but not so simple. His beauty is just beyond a baby beauty. He is a gorgeous boy and I love seeing the pics you post. I get all warm in my heart and a smile I cant wipe away. I just want to kiss him!

Oh and here is to baby boys who look like their mommas! You gotta love it! lol

Much love
Mel

Amy said...

He's getting those chunky, nursing cheeks!
To the person who made comments about giving him morphine . . . take a peek at these photos and tell me YOU would not want some if you had blisters like this on your face. Ouch! Sweet baby!
You're doing a wonderful job.
Amy

Molly said...

He is PERFECT in the eyes of our Lord. And looks pretty darn perfect to me too ; ) We're praying for you. Stay strong little Jonah!

Sara said...

He is SO beautiful. I'm sitting here just so moved by your family. You don't know me, you don't need to, just know you are so loved and so prayed for.

NuNu said...

I'm a first time commenter, but just wanted to say that your little boy is beautiful. Erica said it perfect...He is beautiful just the way God made him. I pray that God gives you and your husband strength and a never-ending supply of hope.

Anonymous said...

Your son is absolutely beautiful. Full of God's grace!

Melissa Ibbotson said...

What a sweet sweet baby boy! I don't know you but I am in tears for you and what you and your wonderful little boy are going through. I'll be praying for you and yours!

Jessica said...

I found your blog a couple of days ago and have been trying to catch up ever since. I just wanted to take the time to tell you now what a great mommy I think you are. Jonah made a great choice when he chose you. He is absolutely gorgeous! Blisters and all.