Wednesday, February 3, 2010

nothing much

Just stopping by to say I may be blogging less over the next few days. I feel like I'm not doing a very good job of taking it easy post-Jonah going to bed, and I just need to take care of me. I hope you'll stick with me, though, and allow me to get myself out of my bummage.

I'm tired. I'm sad. I'm feeling very isolated (not that that makes any sense since I have lots of help). So I think some good nights' sleep and some brain-dead snuggle time in front of the TV is in order.

Positive of the day: I met a blog reader with a Jonah magnet outside of Target. Woohoo!

Negative of the day: Jonah got the worst stare yet today. We were walking in Target and a girl and her boyfriend were walking the opposite direction. When she passed, she looked, then stared, then audibly gasped, and then started hitting her boyfriend's arm so he would stare at the freak show too. Her boyfriend wasn't paying attention so wasn't really looking, but she kept staring and tapping his arm. They passed me and I looked back at them and they were both staring Jonah down. (He was still trying to figure out what she wanted him to look at.) I threw up my arms at them and said in a mean voice, "Can I help you???" The boyfriend then started calling her down ("What are you doing?"), and we kept walking our separate ways. I was SO angry. My face was red and I could feel my heart pounding in my chest. True, some people are just concerned. But some people are just nosey and rude, and I was NOT in the mood.

And then I tried to write all that on my Facebook status and it said it was too long to post.

Stupid Facebook. Can't a girl go on a rant once in a while? Don't these people know I'm in a funk???

Anyway, I'm praying to regain perspective, find some peace, and focus on today.

Jonah's little boy parts are looking some better, and he didn't seem to be in nearly as much pain today (Praise God!). I think I only drained two little ones, so hopefully we're coming out of the grow and spread stage. Thanks for your prayers.

83 comments:

Amanda said...

So sorry to hear about the "starers" today at Target. But very glad to hear that Jonah's boy parts are looking better.

I usually check your blog at my kids' naptime and bedtime (that's my computer time), but the other day thought I would "check in" on you and Jonah after dinner. My 2 older boys (6 and 7) came in the room and asked what I was doing and who the little boy was on my computer. I told them about Jonah, and they wanted me to go back and show them some more pictures, and I explained to them what EB was and how it affects Jonah. Fast forward to tonight, and I was again "checking in" on you after dinner, and I left the window open to come and get them ready for bed. The boys went to my desk to get my water, and my daughter (3) went with them, and I heard her ask who the little boy on my computer was. They said "That's Jonah, isn't he cute!"

Just thought I would share that with you. Now the boys want me to check on Jonah while they are still awake so they can see pictures when you post them.

You get your TV-vegging grove on, and we will patiently wait for your updates. Sometimes a mommy just needs to chill and veg after bedtime to recoup for the next day. I look forward to it every night!!

the*4*of*us said...

Girl,get some rest!!! Your emotions have got to be all over the place with lack of sleep and sress!!
I read the above comment, and wanted to pipe in...my 8 and 6 year-old love looking at Jonah's site! They asked why he had so many bo-bo's, and then decided to pray for him :)
I can understand people looking out of concern and curiousity, but just plain rudeness?? I hope her bf laid into her after that!

Stacy said...

Sorry you are having a hard time. I think you are such an inspiration at all times. I can just tell you are a wonderful mother and even though I don't know you personally, knowing you through your blog, I think you are a wonderful person. Take the time you need and get rested up. We will always be here for you and our prayers never stop, whether you're bloggin or not.

God Bless you Patrice and your sweet family.

Love,
Stacy

Samantha Michelle photography said...

Hello. I don't comment often but I wanted to tell you that I am sorry people stare. I could not imagine what it must be like for you and Jonah. People just don't understand and will never understand. It's amazing how quickly people make judgments, they have no idea anything about Jonah. Maybe she didn't even realize she was judging. I am sorry. I hope that you enjoy relaxing and taking care of yourself. I will hang in there and continue to read your blog. Jonah is the cutest little boy ever..and his eyes are gorgeous. How could you not smile when looking at him. I will keep you and your family in prayers. God bless.

jenniferO said...

So sorry to hear about your funk and the dummy at Target! Get some sleep and don't worry about us! We will be waiting for you...whenever you can squeeze us in. I'm praying for your family!

Valerie said...

Hi Patrice,

I love reading about you & Jonah, and I think some rest and TV will do you some good. I can only imagine how exhausting your days can be - so take all the time you need. I'll miss the updates, but we will definitely still follow you & look forward to some posts when you're totally refreshed. And I think Jonah is adorable, so to heck with those RUDE people :)

-Valerie in GA

Laura A said...

GRRR...rude people make me SO mad!

I'm so sorry you had to deal with that today.

For what it's worth, tonight while I was making dinner, Caroline was diligently coloring on Jonah's birthday card. Garrison (my 8 yr old) asked her who the card was for, and when she told him Jonah, he said, "Oh, I know who he is- he's SO cute!" Don't know if that helps you at all, but did want you to know that he is loved all the way from TX!...and you are, too!

I'll pray for God to renew your strength and spirits. The lack of rest has to have an effect on you - not to mention all the other things you deal with. I hope you get some good rest!

Love,
Laura

nancygrayce said...

Our son has a facial deformity. The left side of his face is much smaller than the right side and he was born with out the muscle that lifts the eyelid of his left eye. He also has a condition called nystagmus which means his eyes move back and forth horizontally all the time and he has to keep his head chin down to see the best. He got lots of stares but the worst was when younger children were actually frightened of him.

Did i mention he's the greatest kid!? He graduated in April from the UF with a pharmacy degree. We treated him as normally as possible and sent him to a small Christian school. The kids there just knew him as Matt. They never made fun of him because they had all been together since pre school.......the mother urge to protect her child from all the c.r.a.p. out there kicks in automatically, and I'm so sorry that happened!

As much as possible, treat Jonah like any other child and he'll benefit from that in the long run.

Tudi said...

I'll miss the daily updates while you get some rest and snuggle time. You do such a wonderful job with this blog. I enjoy reading things that are so well-written.

I love that little Jonut and will continue to keep him and your family in my prayers.

Maile said...

I hope you get a good night's sleep. Funks are hard to get over, but I think the Lord gives us sleep as a gift.
I'm sorry about the girl in Target. The Lord gave you Jonah because He knew you would love him unconditionally. People don't understand and it's sad.
Sweet Dreams and enjoy your t.v. time. T.V. can solve a lot of stress problems, that and chocolate. :)

Katherine @ Grass Stains said...

OK, I hope this will make you laugh and not cringe. Sometimes I feel like the boyfriend in that scenario.

Last year in Home Depot, a man turned the corner and came down our aisle on crutches. One of his legs had been amputated. Nicholas, at top volume: "MOMMY. WHAT HAPPENED TO HIS LEG? THAT MAN'S LEG IS GONE. OR IS THAT A GREEN SCREEN?" (Clearly he's watched The Making of Star Wars too many times.)

Then while we were at Disney World last week, Nick was facing outward at our round lunch table and I was facing inward. All of a sudden, he pipes up again in all caps: "MOMMY. THAT PERSON IS AN ADULT BUT SHE'S ONLY AS TALL AS I AM. MOMMY, SHE'S GROWN UP BUT SHE LOOKS LIKE ME. MOMMY, DO YOU SEE? DO YOU SEE?"

There are times when I just wish there were a trap door under my feet.

Terah722 said...

Praying for you girl! I'm asking for a miracle for your son and some relief for momma. I wish you lived closer so I could run into you at Target and see Jonah's beautiful blue eyes in person! :) I hope the funk is gone in the morning with a little extra sleep. I know that sleep makes my whole perspective change!
Terah from Florida

The Goodman Family said...

So sorry that you are in a "funk" and that you had such a difficult day, but I am glad that Jonah seems to be doing better. I am also so sorry that there are so many rude & heartless people in the world, but please remember that the world is also filled with a lot of good, Godly people who love you Matt, Jonah & Deac (even if you are Wake fans, sorry I just HAD to put that in). Our family still prays for you guys & we love you. Please remember that you are truly an inspiration to many, and that we are all on your side!

God Bless!

Libby said...

Those kids deserved to have their rudeness corrected!

Yes, by all means take a break! We are lucky that you blog, but blogging is not your job--you already have a full-time job with overtime and need some rest time!

Krista said...

I'm sorry people are so insensitive. I'm glad you let them know how inappropriate she was!

I hope you get some well-deserved rest - don't worry, we'll all be here when you can post again!

My little boy (18 months) loves looking at Jonah's pictures. His favorite new word is "Baby" and he loves seeing pictures of "babies" (even though some of the "babies" are not much younger or even older than him!).

That's so cool that you met a blog reader at Target! I'm sure that's a totally surreal experience, to meet a total stranger who reads your blog!

Get some rest - praying for you!

Sewconsult said...

My motto is something that I think everyone needs to remember:
Be kinder than necessary, for everyone you meet is fighting some kind of of battle.

Hopefully that girl will always remember how rude she was for the rest of her life! I am sorry that you were hurt. I understand more than you could know.

Beckie in Brentwood, TN

Jessica said...

I just don't see how people get the gall to do that. It takes some serious ignorance to stare someone down, perfect skin or not, and then get others to stare too. Jonut is lucky to have a momma who will put those people in their place! Such a sweet, sweet boy who is always in my prayers. I was changing my 6 mo. old's diaper earlier and just started thinking about Jonah and how painful his boy parts must feel. I pray he gets some relief soon!

katrynka said...

I wish that I could give you a hug:)

When I used to do home care (I am a pediatric physical therapist, there were some days that I would arrive at a home, and see that Mom was at her wits end. I always loved that I had the great job of being able to give Mom a little break, let her take a shower, get some phone calls done, have a cup of tea. Obviously most of my sessions were geared towards teaching Mom in addition to providing direct therapy, but sometimes a little support is the best therapy for Mom!!I wish I could do that for you:)

the bennetts said...

Rude people are the hardest to deal with. My daughter has two cochlear implants and when people stare, walk past, turn around and stare, and keep doing that the entire length of the mall, they get my "death eyes". My blood absolutely boils. I'm glad you said "Can I help you?!" Sometimes punk teenagers think they can do whatever they want- and they never stop to think that it could be them or their baby one day. So I'm glad you said something, and I'm sorry it upset you so much. I'm wish you didn't have to go through so much hurt, you are such a strong woman. I read your blog every day, this is my second comment. I just think Jonah is absolutely precious. To be honest, when I look at pictures of him, I hardly (stay with me) notice the blisters anymore (like I don't notice my daughters cochlear implants). Back to J- I'm kinda used to it now after reading so frequetly, so all I see are those gorgeous blue eyes, those curly lips and blonde hair. He is just so darling- and that is my favorite word to use, but I only say it when I truly find a child "darling"... which is rare. Many babies are cute or pretty or whatever- but yours is truly darling. I hope one day I'll run into you at Target (I live in Raleigh, so I know it's probably not going to happen) because I want to see this sweet boy in person, and meet his amazing mommy!! Praying for peace for you tonight.

Janet said...

My son has aspergers and people judge us all the time because its invisible to them. I live near you and probably shop at the same target. If I ever see you their I will give you a hug. Your son is beautiful.

On a side note most of the people at that target are rude. I'm so sorry you had to deal with that.

Devon said...

take your break girly...you deserve it! you are an amazing mom!

and geez, i am so sorry for that person at target. some people just haven't got a clue...((hugs))

Nancy said...

HUGS

lifelaughsandlove said...

Ugh, I know what it's like to be in an unexplainable funk :( I've had so much personal drama in my life and even though things are actually looking much more positive, I find myself even more sad and moody. I will pray that you will get a better perspective. I know it's helped me to just start saying no to things that are making me more stressed out, and to focus on myself more which it sounds like you are doing. So take as much time as you need, and take care of yourself. If you don't take care of yourself you won't be able to take care of Jonah.

I think what you did today at Target was great! I know it must have been really difficult for you, but Jonah is lucky to have someone like you to stand up for him.

I'll be praying for you!

~Amy

Bojomama said...

God Love Your Heart. I am the mother- also a pediatric nurse- my now 23 year old daughter was born with a port wine stain that covers the side of her face and neck- stares- and wait- kids are cruel because they do not know to lie. But she just got married Jan 1 to her high school sweetheart and she is the most gorgeous girl- she has true inner beauty that gives her outside glow. She has a heart of gold. And as in her words as a 3 yr old- "God spilled Kool Aid on me when he was making me". She knows that true beauty is from the heart. The love you give Jonah everyday will teach him this too. Hugs.. Kelly

Crysgoss said...

I'm very sorry for the ignorant people out there.
Jonah is beautiful( handsome) and seems like he
has the best personality!
Get some rest!

Tricia said...

I am praying for you. I hope you are doing better soon. Don't worry about us, we will be here when you get back. Take time for you. Glad Jonah is doing some better. I will continue to pray. God bless you and yours.

Wanda Wilkinson said...

Patrice,

Sorry to hear about the "ignorant" people you encountered today. We can only pray that God will open her eyes & close her mouth. Remember for every "rude" person out there, there are 1000 that love that sweet handsome boy of yours.

Take a break, you will be missed because we all love you, Jonah & Matt, but you must take care of yourself. The snowy/dreary weather cannot be helping how you feel. Even though the snow is beautiful when it is falling for some reason it make me sad.

Praying you got a good night of rest & some snuggle time with your hubby..

Thankful to hear that Jonah's boy parts are doing better. Seeing him in pain adds to your sad feelings.

Please know that you are loved & prayed for many, many times a day.

I wish I could come & give you a big hug,,

erin said...

stupid girl....so rude. i am so glad his little boy parts are getting better. hang in there girl. He will lift you up out of the funk...and I will lift you in prayer too! hope ya'll have a wonderful thursday. get some much needed rest. much love and blessings from ga~ erin

Covey and Justin said...

If you guys need a little getaway let me know--My folks have a house in Morehead City and you are welcome to head down. I could bring my three kiddos too and help do the dressing changes etc. I know how it is to feel isolated and trapped in!!

Monogram Girl said...

Just remember that 1, the girl was young, and 2, she was startled by your little guy's look. Yes, she was rude and inconsiderate, which probably points back to her parents and they should honestly be ashamed of themselves. However, she might have genuinely been concerned and just did a craptastic job of showing it.

My child is disabled and when people stare at us, I try to remember that I am the way I am because of the perspective my son's situation has given me. Without it, who knows where I'd be.

I also know that my sons both say some C.R.A.Z.Y. things that embarrass me to NO END when we're in public. It's human nature to notice something odd and different, and it's ignorance and naiveness that tells one's brain it's okay to share it audibly.

You can't educate everyone you meet, you can't change everyone's perspective, you can't make them understand or be polite. Sadly, you can't protect Jonah from all of that pain, and you certainly can't protect yourself. But, you can learn to pick your battles, learn to be oblivious (my personal choice), and learn to love your life--good parts and bad. Because in the end, it is your life, the one that Our Lord gave you. And hopefully you'll eventually get to the place where all of the b.s. doesn't affect you. Because if you let it affect you every time it happens, you are going to be miserable.

Get some rest, don't worry about this blog! I read every single day and I'll keep reading if it's only a few days a week!

Maria said...

I sincerely hope and pray that you and Jonah are feeling better soon. Sometimes you just need to take care of yourself. I hope you can allow yourself that.

Jill said...

Take all the time away from your blog that you need, Patrice. We'll all still be here checking in and of course praying for ya'll!

Ugh, just pray for that ignorant girl and all the ignorant people out there that will give you grief in the future...

Love ya!

Jamie said...

Bless your heart Mommy! I'll say some prayers for you and Jonah. You take all the time you need. We'll still be here when you return!

Nora Lee said...

Of course we will stick with you! Take care of yourself and we all will be praying for you.

I'm sorry you had to endure the crazy woman in Target. I love the way you handled it though.

Take care...and give Jonah a hug for all of us who care for you all.

Toni :O) said...

Oh sweet Patrice...I'm so sorry people can be so mean and rude...breaks my heart for you guys and I wish I could take it all away. Those of us praying and checking in on you KNOW how beautiful Jonut is inside and out and that's all that matters. I love that sweet boy as if he were my own and I pray over him daily. I want nothing but a great life for that little man and only hope people will be more sensitive down the road towards you guys. Hang in there and we totally understand if you can't post as much...we cannot imagine the type of day you have unless we were to walk in your shoes. Take as much time as you need, we'll always be here. Big hugs to you for strength and support always.

Linda said...

Patrice,
This is the perfect time of year to snuggle in-sleep and be restored. It is heartbreaking to see Jonah's little face and know the discomfort he endures-but the joy of his strong little personality and those sunny smiles just raise my spirits-the starers are just clueless-and totally lacking any social graces.
Wallow for a little while-you deserve it-but know spring and the rebirth are on the way! You are always in my prayers.

Patty said...

You take care of yourself. Your faithful blog followers (me) will continue to check in on you.

I have a brother who is in a wheelchair (we were struck by lightning) and we get those stares too. I HATE THEM!!!!!

Now go get rest and come back refreshed.

Lis said...

I am sure that young lady did not look at Jonah as a freak show, I'm sure she was shocked but concerned. I will pray for her, that she would learn to be more considerate of others feelings. Love you and love your little man!

Jill said...

Take all the time you need, you deserve a break more than anyone I know. We'll still be thinking of and praying for you.

Aunt Bobbi said...

You take some downtime it is difficult always being so visible just like living in a glass house. I look at you and Matt so young but such faith. You make me try to be better. I will be praying for the young women that upset you so badly. She needs to mature and be sensitive to others. She will not easily forget that day and hopefully react differently the next time she does not understand. You just keep on spreading God's message and love.

Jenny said...

Hi Patrice!
It was really nice to meet you yesterday. Jonah is even cuter in person. It is so sweet how excited he gets when he sees you. He loves his mommy!

I'm sorry those people were bothering you in Target. I wish I had known because I would have stood up for you. You're a great mom with a great kid.

I'll keep praying for you guys.
Jenny

Frugalista Mama said...

I said a prayer for you and Jonah last night. Hoping you find the strength you need.

Casi said...

Oh Patrice, I'm so sorry you had that experience at Target. Some people are just unbelievable, aren't they?

Don't worry about us hanging with you while you get some well-deserved rest - you HAVE to take care of yourself, girl.

Will continue to pray that a peace that passes all understanding will envelope your family continually.

Erica said...

just wanted to say we love you! We are Prayinig!

Erica said...

Just wanted to say we love you, and we are praying!

Love Mitch, Erica and Miller

truth4nothing said...

I really do pray for you all. I don't just write it on your blog because I don't know what else to say and my heart is hurting for you and Jonah. I ask God to be very near, and to give you wisdom and courage, and to please heal Jonah. I wish there was a cure. Lord, please- help, us we need you.

R+G Stewart said...

hi there! just found your blog through Allison and Kevin's blog. We all went to ECU together. Your story is so amazing and encouraging and heart wrenching. I am praying for you all and there is support coming from us, all the way in Vermont. Your son is so beautiful, I wish I could meet him. We moved from Winston to VT four years ago, so I feel a connection.
Smiles. Rachel + Grant

Jen Burns said...

I'm so sorry people can be so cruel! It makes me think that people like that really feel like poo on the inside and so whenever they see someone in what they would consider "worse" condition they are unable to feel compassion, but are consumed with fear and mocking. There is no light in them.

Praises to God for Jonah's bit of healing. You are such an inspiration and it is posts like these that show who your heart seeks. Time taking care of the body and mind God gave you is time to draw Him near and I have set my dashboard to follow you, so next time you post it'll show automatically!

I hope you get your much needed rest and draw near to the Lord and He will bring you out of isolation and into His loving embrace.

God Bless You, Matt and Jonah!

Bethany said...

Its easy for me to get caught up in the blog world, too! Please don't feel like you have to apologize to anyone about not updating the blog. I definitely understand! You need rest and it's ok to rest!

Matthew 11:28-30
"Come to Me all who labor and are heavy laden AND I WILL GIVE YOU REST. Take my yoke upon you and learn from me. For I’m gentle and lowly in heart, AND YOU WILL FIND REST FOR YOUR SOULS. For My yoke is easy and My burden is light"

It happens to all of us, its easy to get in a funk, especially with all you are going thru. I have a daughter with special needs, and while her heart defect isn't visible to passerby, it still affects us in ways not everyone can understand.

As for the girl in Target is concerned, HOW RUDE! I can't believe how ignorant some people can be. I would have probably said the same thing you did to her. I know that probably broke your heart, and I'm so sorry. Some people are so heartless.

Carrie said...

Sorry things are so rough. You need some down time for sure. Those starers suck. Unbelievable. Praying for strength for you and praying for pain free days for Jonah.

Journey of the George's said...

Please get some rest! I will be praying for your bummage and for you to feel God's loving arms around you giving you just what you need.

Lindsey Sowers said...

That is so something that would happen at Walmart, but not Target...I'm so disappointed in "our store" customers. Some people are stupid, and you just can't fix stupid. Hope you have a better couple of days. I'll be sure to give some shot outs for you to the Big Man. Hang in there :)

WendyBee said...

I usually post a comment without reading all of the other comments, but today I was drawn to the first comment by Amanda, and now I'm all teary-eyed. Such love...
I wish I had a gift like that story to offer. I don't just love, love, love, prayers and cyber-hugs. Get the rest you need. We all understand.
WendyBee

Julie said...

Praying for you, Patrice! You need to do what you need for yourself! That's all that matters. Know you are not alone, we will all hang in with you and we all love your little guy! Praying - always!

MotocrossMom AKA Autumn H. said...

Patrice,
Not sure if you are open to suggestions or not, but I read where you said you are smearing a paste of Aquaphor and other OTC items on Johnah's sores.
When my 2 yr-old was in diapers, he woud get horrible open sores/blisters all over his diaper region.
After trying every prescription creme and over-the-counter remedy, an ER nurse finally suggested I try Resinohl. It was a cream that was developed to help skin that was recovering from 3rd degree burns. It is available over the counter, but you must get it from the pharmacy. I have my pharmacist at Walgreens order it in. Most stores do not carry it, but if you have a Walgreens by you, they will special order it for you. I usually have him order 2 or 3 tubs at a time. They cost about $6-$7 each (pretty cheap) and the stuff is amazing. It also has a slight numbing ingredient in it, so it helps with the pain. I use it on my own family for cuts, burns, scrapes, etc. It is amazing.
Maybe you could try it and it might help your little baby boy. If you can't find it, I could get some here locally and ship it to you. If you are interested, just email me at Autumnh24@yahoo.com

It did wonders for my Xan - no more bloody diaper changes.
Good luck!
-Autumn

the-mommy-person said...

You deserve to take the time to get over your funk any way you need to. I think it's funny that you use the word funk, my husband says that and I honestly thought he'd made it up. Guess it's a genuine word. :) We are all in a funk here. I don't know what your weather is like where you are but here the sun is MIA. We're all trapped inside with drizzly/freezing rain going on outside the window. Prayers for relief for you. For honest to goodness rest and relaxation. For happinessness. (((Hugs)))

Jen said...

I guess it's hard for me to grasp that some people DON'T read your blog! You mean everyone doesn't know about this sweet little boy? They should! I hope that your efforts to educate your family, friends, medical professionals and anyone who asks will pay off with more acceptance and understanding in the future.

Cheryl said...

Dear Patrice,
I've not your blog for the past few days only, and I already am amazed by your outstanding courage and faith in the Lord. Remember God will not give you more challenges then he believes you can take, so do not forget to keep your head high, and trust Your Savior at all times. You're an amazing woman, and don't let stares be the thing that make you discourage. You did the right thing by standing up for yourself, but you could also maybe, next time, share with these people what Jonah is living. Who knows, maybe they could be your next blog fans? I hope you'll feel better soon.
God loves you and your family more than you can imagine!

Isaac Dakota said...

You need to get some kind of a t-shirt made up that you can wear around when you are out and about that "kind of" explains. Then maybe you wouldn't feel so bad about people staring. Not that it will make you feel any better, but still. Totally unrelated, but I always wanted to get a shirt before I started showing that said, I'm pregnant this is why I am running so slow. I think we tend to feel self-conscious when we know that things are usual with us.

Hang in there. You are a great mommy and much stronger than I think I could be. Get some rest and that should help rejuvinate you a bit. Sleep deprivation wreaks havoc on your disposition and outlook.

Photographic Memories said...

You're so much nicer than me, Patrice. I would have been a lot less of a Christian example, and strung her up by her toes!

jenn

Beth said...

Praying: "Come to me all you weary and burdened, and I will give you rest." - Matthew 11:28.

Blessings to you from Michigan!

Cheryl Ezell said...

I look forward to reading your blog every day and think you are amazing! Jonah is lucky to have you and Matt! He is beautiful and don't let some teenagers make you think otherwise.
You veg and get some rest and all of your faithful readers will be here waiting and praying for you :)

Cheryl in AL

amanda said...

Well, I never comment, but something led me to comment today. I just love Jonah and your family. Just wanted to express my love and support and let you all know that I'm praying. I hope you can take some time and get to feeling like yourself again soon!

Erin said...

I am so sorry you had to go through that with the starers today. I'm praying for you, you amaze me, I cannot even imagine going through all you do with your precious son every day. It is no wonder you feel worn out and down. Take the time you need we will all be praying for you.

teacheroftwos said...

Thank you for the thank you letter! So excited and surprised to recieve that in the mail today!

amber said...

Oh Patrice--what a rude girl, she should be banned from Target! It makes me so sad to see kids who are obviously hurting...I don't get why people feel the need to be so rude. Just know that Jonah is loved by so many people and big rude-heads need to just be ignored.

ForeverYoung said...

Consider the source, I say when someone says or does something totally stupid! You have to wonder how some people were raised, no manners! My 9 year (like Amanda's boys) like to see the pictures of Jonah and keep up on what you all are doing. Prayers and love from Ohio! If we ever see you in Target, we'll throw kisses your way.

vanettens said...

Patrice, Good for you deciding to go to bed earlier, I feel like that really helps in the mood department and I need to do it more often myself!

As for the staring, I actually thought about you and Jonah Tuesday at the gas station. My 3 year-old woke up with spots all over his face on Monday, and he had his 3 year check-up on Tuesday and by then they had spread to his hands also. So I had to go in the back door of the doctor where all the rashy kids are sent, and the doctor diagnosed him with impetigo. On the way home, we stopped at the gas station (why, when I ask my kids where they want to go for fun, they say 7-11, I don't know) to get a treat for being good at the doctor and I felt just a taste of what you must go through when you go out. It made me want to tell everyone what he had and that he wasn't contagious.

My boys also know Jonah, like another one of your commenters, and I was able to explain to them how everyone is different so hopefully they won't grow up to be one of those rude starers! And by the way, if I ever run into you which will probably never happen since I live in Florida, I would also be hitting my husband's arm saying "That's Patrice! And Jonah! I have to go talk to them!!!" :) Praying for you and your funk and I hope you know how awesome you are!

kathunt said...

I'm sorry you have to deal with such crap! BUT on a very positive note I was at a consignment sale today, JumpinJaxKids, here in Jacksonville and they had Johan's magnets. I bought one at the last sale, last spring. I just thought I let you know! I just thinks that's so cool!!!
Try to get some rest & take care of you!!!

Maryellen said...

Patrice the Lord brought you to my heart and mind on the way to work today. I prayed for you. I prayed for your mind. I know when I have things that concern me, my mind can go over and over it. I can just imagine hard it must be for you to calm your mind with things of Jonah. Especially since there is not alot of EB information for you. I know you try things daily with feeding, and dressings. It was so heavy on my heart for you to have peace of mind. To have a quiet mind. I thought of the verse in the bible about tossed to and throw like the wave. I know my mind can go to that place very easily. Not sure if this is what happens to you but please no you were heavy on my heart and I prayed for your peace of mind.
Have a restful weekend . . .

Marlo said...

There's a good Focus on the Family podcast that you may want to listen to. It's called "Embracing Children Who are Different". It aired January 10.
It's really okay to not blog and to take care of yourself. Being tired can REALLY affect your mood. You are in a marathon so you must pace yourself.

jandkland said...

When people see something they cannot comprehend, they behave in defensive and offensive ways. I'm sure cancer kids get stares all the time too, but they at least have commonality on their side. Most people know that bald children are often undergoing chemo. Very few people are aware of EB. Regardless, it is never okay to act the way that person acted toward you and Jonah. I'm sorry the world is full of people like that, who take no time to consider and reflect and think before they speak. I'm sorry Jonah will have to encounter such individuals his entire life. I pray right now that God gives him a great sense of humor so that he can shrug it off and go be with the people who love him and know him as the child of God he is.

Tonight, I also pray for you, Patrice! May God bring comfort to your spirit, rejuvenate your passion, and give you what you need in the way of friendship. You have great support for your amazing baby boy. You also need something that's just for you, whether a good friend, a huge chunk of TV, or a great read. Thinking of you and praying this comes your way soon!

--Kelley in GA

Jennifer said...

I want you to take care of you girl because you take care of so much else. I saw in Walgreens a t-shirt that read "Cutest Baby Ever, Stare if you Must" I immediately thought of Jonah. I went back to buy it. Gone. Look for one. I am going to look for one too for you guys. Praying for you too. This "winter" season will come to an end.
Jennifer in Southeast, NC

Sandy said...

Oh Patrice, I know exactly how you feel about people staring. My grown son has a mild case of cerebral palsy and it affects him slightly physically. Therefore he walks a little abnormally. I have seen and still see people stare at him. If we are walking into a store and we meet people walking out, I can see their reflection in the doors and they are turning around just staring away. I too have confronted people. It makes me so mad I could bite nails. Sometimes I even stop and tell people what he has.
Now, on a positive note, I saw a car on Reynoda Road yesterday with a "Jonah" magnet, so I followed the guy into a service station parking lot, rolled down my window and talked with him for a moment. As it turns out, his children's nanny knows you guys! I just thought it was so cool to see a "Jonah" magnet like that!

Anyway, darlin, I pray you are doing better today and have overcome your gloominess. It's got to be so hard some days. I love you and your family and pray for you all every day.

Love & prayers,
Sandy Moore

LisaL said...

Oh, Patrice! I got so mad (and hurt) reading your post tonight! I wanted to smack that girl upside her head!! Sending you a big hug and lots of prayers! That's cool that you ran into someone with a Jonah magnet. Enjoy your down time and we will be here when you come back!

Bridgesfam said...

I'm glad you said something to that rude chick. People without common decency should be pitied. I'd hate to have to live with myself if I was that rude. I think Jonah is absolutely adorable and I'm sure all your blog readers would agree with me. I wish all the starers could see that too. Glad you're taking some time to take care of yourself. I'm also glad to hear that Jonah's little boy parts are doing better. I hope they continue to heal and fast.

chinamoon1420 said...

Praying for you. Sorry you had such a horrible experience. I think Jonah is the cutest thing ever along with my sweet baby boy and that sweet Stellan. I can't imagine how your heart must ache for Jonah. Just know, you are doing such a great job. Even on your "ugh" days. We moms are allowed A LOT of those!
Much love!

Lisa said...

I saw this and it made me think of your episode with the lady at Target http://www.youtube.com/watch?v=-N7TgcY4sVc
You can be bitter, or you can educate.

. said...

I am praying for you and your family! God WILL hear AND answer. Much love~

ashpuck said...

That just breaks my heart. I was thinking to myself how I would react if I saw you and Jonah in Target. You would probably think I was a freak for freaking out about seeing ya'll! I'd have to compose myself and hold back the excitement I'd have with getting the chance to meet ya'll in person! I wish that girl knew the story behind Jonah and what a miracle he is. Maybe she'll come across your blog and learn about him.

I feel like I need to tell you again, how much I appreciate the time and effort it takes for you to blog. Your stories have allowed me to get to know and love Jonah. I enjoy your stories and love being able to pray for your family.

Take as much time as you need. I'll be checking back awaiting your next post and precious pictures of Jonah.

~Ashley

krueth said...

Praying for you all... WEndy

Jennifer said...

Maybe a t-shirt-- that says, GOT EB? would help or a bib?? Just a suggestion... Obviously with out these blogs I would have never known about EB. Thanks Patrice!

Jill and Jason said...

I read your blog occansionally. I just read about your Target experience. I am so sorry this happened. My oldest son was born with a bilateral cleft lip and palate. He looked quite different from most babies. We would get stares, ugly comments, etc. It sucks and is totally unfair. I try to remind myself that people who do this are ignorant and the problem is theirs and not mine. It doesn't make it any easier though. Good luck to you and your family.