Friday, February 5, 2010

back to the beginning

I think there are several things factoring into my funk. Jonah not sleeping much during the day is one (in addition to the crap that is EB and this poo poo weather that's keeping us inside). Because he won't nap more than thirty minutes when not in my arms, I feel like I don't really have time to do any of the million projects I have in my head that I want to do. (I am a terrible Sit-Around-the-Houser... always have been. It puts me in a very foul mood.)

Anyway, one of the "me" things I've been wanting to do is go back and edit and upload to Shutterfly the pictures we've taken (well, the decent ones at least) since Jonah's been born. I'm wanting to make photo books (really super easy through Shutterfly) of all the photos from this past year. The problem with digital is that you don't get your pictures printed, and the problem with paper photos in general is that they end up in a box in the closet. So I hope the photo books will be a nice way to have them printed but still easy to view. Once I get done with that I'd like to go back and scrapbook (Thanks a lot, Katherine, for making me want to scrapbook again... like I even have time for that) at least his first year. Yes, this is all going to take forever. No, it will probably never happen.

So last night, instead of blogging, I edited the photos of Jonah's birth day. Lauren took these, but I edited them, so if you don't like the editing job, blame it on me (or Pioneer Woman... they're mostly her actions.) Lauren put a lot of these on her blog last February, but I don't think I've posted many of them here. I'll try to post a few here and there as I go back and edit all of these older photos. It's pretty amazing to see just how far Jonah has come and how much he's grown!











(And just to clarify the Target incident - the "girl" was at least in her twenties. It would not have made me as mad had she been a child or even a teenager. And I know I shouldn't get mad and should use the opportunity to educate, but if you had seen how she was staring at him and making a scene, you wouldn't have wanted to educate either. She was completely out of line. I'll maybe get to that place with time, but honestly I just wanted to kick her in the teeth... inspirational, huh?)

43 comments:

Kelli said...

Mama lion's basic instinct is to protect her baby, just like ours!! God will give you strength to deal with the ignorant!! Also, thank you for sharing these intimate photos with us!! Jonah is our hero around here...you and Matt too!

Jamie said...

Patrice - you and Matt have come so far - Jonah, despite the hateful EB, is sweet and happy and full of spunk!! And it is because of both of your unconditional love for him and each other. Don't waste your energy on ignorant people. And you certainly don't need to make excuses for your actions. I say Go, Girl!

Amber said...

I had the exact same feeling last summer. We were at a local Christian school for my son's swimming lessons. Julia is 3 and was in the midst of chemo. She was pale, bald, skinny, and had fallen and bruised her face. She was pitiful.

A girl, about 9, felt the need to point at her and yell "Ew, gross! Look at that girl!" About 3 feet from Julia. I've never squeezed my hands and bit my tongue so hard in my life. Then I just cried for her and begged God to erase the memory from her mind.

Praying for God's supernatural protection for your family and Jonah as he grows. May God give you hearts hard enough to endure this cruel world, but soft enough to love everyone in it. May His light shine from you when your flesh is weak.

Love the pictures! And Shutterfly is great. I just did a book fro Julia with her cancer journey from the past year so she can process and deal with it all.

Erin said...

i wanted to kick her in the teeth too but i was afraid to say it out loud! mama's can't help but be protective over their babies~ don't mess with them people~ esp. an adult..immature much? hope ya'll have a wonderful weekend~ much love and blessings~erin

Confessions From A Working Mom said...

I am so upset this happened at OUR Target! K-Vegas should treat you better than that, Patrice!

I can't believe Jonah's almost a year old... I can't believe I've been following your story for almost a year. Thank you so much for sharing your strength and your struggles with us.

~Elizabeth
Confessions From A Working Mom

Joceline said...

Those are some beautiful and powerful photos. Lauren so captured the joy, the pain, and the fear on your faces, and Jonah looks just so beautiful and peaceful.

I don't blame you one bit for your reaction to the "girl." Maybe you didn't "educate" her in the sense of telling her all about EB, but you did educate her by letting her know that her actions were not discreet and that she was being rude and unkind. Hopefully she was embarrassed for her behavior and will think the next time she is tempted to have a visible reaction to someone in public.

erika said...

Hi Patrice! The "new" (heehee) pics are beautiful. I've been reading your blog for the past yearish (daily for the most part) but don't always comment. I cannot believe Target girl. I probably would have kicked her in the teeth. How DARE she stare and point and make a scene. It makes me sick to think there are people out there like that. Moving on....

Keeping you in my thoughts and prayers and hope a nice sunny day comes your way soon. I am pleased to say I was able to get 30 minutes to myself this afternoon as my two kids napped simultaneously (a rarity at my house). I sipped a diet pepsi and read my email. Ah, the simple things that make us happy, right?
Erika

PS you may have already tried this before, but when my kids have a really had diaper rash (nothing in comparison to Jonah's, I know) I make up my own butt paste (we used in the PICU I used to work in). I use a tube of desitin and a tube of aquaphor and then enough maalox (liquid) to make up a decently thich but spreadable paste. I call it Mama's Magic Buttpaste. If I think the rash looks yeasty or infected appearing, I mix in lotrimin or bacitracin before adding the maalox.

Miss Carey @----'---------- said...

Such wonderful photos (and you edited them so well). Perhaps you can work on the computer on them when Jonah's sleeping in your lap?

This may be my second comment, but I've been following your blog and praying for you all for months. :)

Your story of that "girl" keeps haunting me... You know, I bet she either lost her boyfriend or it came really close to that... She must have some *serious* issues...

Praying for you all and sending you and Jonut (what a fun nickname!) a hug. <3

Michael Joseph said...

Digital scrapbooking LOVE IT!!! I can sit and with my wireless mouse and my laptop on my table next to the couch I can work for hours with just one hand! Second most of the things that I use are FREE!!! I sat down last night and made a 20 page album which I can have printed at Costco or wink flash. Something to think about. When I have people looking at my son who has issues. I just think they are just jealous that I have the best looking baby in town!! I know it can be hard we are praying for you:)

Jen Burns said...

OH, baby day! He has come such a long way in the last year! Congratulations on doing such an outstanding job taking care of him!



P.S. Eye for an eye, I'd kick 'er in the teeth too! lol!

kim_brough said...

Are you kidding? I'm inspired you DIDN'T kick her in the teeth.

The Skinny on Getting Thinny said...

this post brought tears to my eyes! Birth, regardless of circumstances, is so amazing! Jonah is a beautiful boy! I guess handsome is a better word :)
Sorry about the girl in Target. Some people's parents did not teach them it is not ok to stare and make a scene. I would have reacted the way you did.
Hang in there!
Emily

Melanie said...

I have a child with autism and have endured stares so many times when she has had meltdowns in public places. I know some parents have cards ready to give out to people explaining the situation. That way the person is educated and you don't have to expend any energy when you are seething mad. Your baby is so beautiful and precious!

Laura A said...

These are beautiful pictures, Patrice. Lauren did a good job capturing all three of you. It's also a testimony of God's provision this past 11 months. I know it doesn't take away the pain, but it is exciting to see how much Jonah's growing and developing, despite this terrible thing called EB.

I hope you all have a wonderful weekend, and that you'll continue to rest and renew!!

Love from TX,
Laura

Jaci said...

I don't know if you'd be interested in this or not but thought I'd throw it out there... Blurb.com is awesome for making books and it will import your entire blog for you. Then you can just go through and delete any posts you don't want in your book and rearrange pictures and add in pictures. I made my first book last fall and plan on doing one every year. Your hospital pictures are beautiful!

Wanda Wilkinson said...

Patrice,

You have always been open, upfront & shared some of the most personal intimate parts of your life, but these pictures leave me breathless. You are once again opening your heart to share more of Jonah;s wonderful life with us followers of your blog. For you to be in a place with yourself that you can go back & share these pictures speak so much of the love you have for Jonah & Matt.

I noticed Gabe's bear sitting next to you. Gabe was there right beside you to give you & Matt comfort.

Jonah is one of the most wonderful little boys that I have had the opportunity to love. I feel like God has showered me with such great blessings to be able to watch him grow through all that you share with us.

Patrice, you are such an awesome person, you definitely do not have to tell people how much you love God or Jonah--your demeanor says it all.

I get angry thinking about people being rude, ignorant, insensitive to Jonah & he is not part of my IRL ..I have seen him in person 1 time and I am willing to hurt people to protect him, so my mind cannot even wrap around how you felt.
Do not apologize for protecting him. You are the mom, you are Jonah's best advocate/protector. It is hard to come face to face with ignorance.

I pray that this weekend brings your some renewal of spirit & energy & some rest. Take care of Patrice so you can take care of Jonah

Love & prayers

Mandy said...

I've just recently started reading your blog! Just wanted to say hello! :)

Have you thought about trying to hand out a business cards with your blog address on it, to curious bystanders? And say if you want to know more details instead of staring please visit our site? That way you don't have to bother with people when you are not in the mood to! I am sure the questions get old very quickly!

Most people have probably never heard of EB!

Au-Me said...

Those beautiful photos take me back to that day/night so vividly. I have tears and chills to think how far Jonah, you and Matt have come. Jonah has made our family better, closer, and stronger. We are so blessed at how he has touched our lives. Bring on the Celebration of the Century! Love you guys.

Libby said...

I've made exactly one scrapbook--it was kind of fun, but not worth (for me) the time involved--especially because it FELT so labor intensive. I LOVE Shutterfly, and especially the photobooks--they are becoming my cheating way of "getting the photos into albums." Have fun--take all the nights off you need to do things that are fun for you!!!

Nurse Mommy said...

Patrice, try Blurb.com - their photo books are easier to make, more customizable, nicer quality, and cheaper than shutterfly. I used shutterfly for years and have now gone back and re-done all my shutterfly books through blurb, because they are so much nicer.

I would have probably wanted to kick her in the teeth too. It's not okay to behave like that.

Tiffany said...

Oh your photos are lovely, just lovely. And all mommy's want to protect their children. My four year old just got glasses, and she was already picked on. Grrrr.

The Dolezal Family said...

I would have had a hard time dealing with that too. But I have wanted to ask a question about it as well. I know when I see children out and about that have some type of disorder or disease. I don't want to ignore like I can't stand look at the child and I don't want to stare, so what is a good reaction? Is it better to just look away, smile at the parent, what? I have no idea. I don't want to be rude but I don't want to be uncaring either. I would love to know what you prefer as a mother.

And I would totally love to run into you at Target. Jonah is quite the celebrity at our house, in every prayer our boys say. They even fast for him once a month.

Just Me - MJ said...

Oh, Patrice - I am so sorry you're having to deal with the rudeness and ignorance of others on top of everything else. It feels like such a kick in the teeth, doesn't it? Our 2 year old son has a very obvious physical issue and people have felt increasingly comfortable commenting on it in recent months. I think bristle each and every time, even if I am in a friendly, educational mood. I just can't wrap my mind around having the audacity to comment on something like this to a stranger. Didn't their mothers teach them some very basic manners?!

You are a wonderful, amazing mom and Jonah is so incredibly lucky to have you & your husband as his parents. You will get through this and you will (all) thrive. Hang in there. I hope you get some sleep this weekend and find the coming week to be an easier one. Praying for you in CT...

brightleigh said...

What a walk down memory lane. This past year has flown and it is so encouraging to see how far you guys have come and also to see HOW MUCH we have all LEARNED! I know you won't be down for long...there are greener pastures ahead and parties to attend! Love you guys!

P.S. Rob thought it important to let you know we ate at Mongolian tonight...I think of you both when we are there!

kidsdogs4me said...

Your photos are just beautiful. Especially the one where you have the look of disbelief and with Matt holding you. They really show your true emotions.

Hope the weather is not hitting you too hard. I'm up in Rockingham Co. without any power tonight, so hope it's better where you are at.

Continuing to pray for you and your precious baby!

Oh, just wondering if the birthday party will be open to the public? I would love the chance to meet you and Jonah:)

Donna in NC

Lauren said...

I love seeing those photos... I cannot wait to document him at a year old in less than a month!

Love you and it was so good to talk to you--even just for a little bit tonight.

Alissa said...

Your family is amazing. The pictures made me breathless and teary eyed. I hope you know how many lives you have touched and how much awareness Jonah has raised.

Crystal said...

I don't blame you about the women in Target. That makes me so very mad!!! I seen a show tonight about a little girl how is a Primordial Dwarf and people were coming up to her mom and asking if they could take a picture with her. I was like really the nerve of some people!!! I hate that people act this way it is sad. We have been waiting and waiting for our son to be seen so he can be tested for Autism mainly Aspergers Syndrome. He can sometime say and do things that well makes no sence to other people. At times we have been given looks like "oh that child is nuts" I just want to scream at them and say hey he can't help it. It hurts me to the bottom of my soul to see grown ups act this way.

gianna said...

I just stopped by to say hi. Your son is beautiful. Praise that you've been given such a precious gift.

Penny said...

Hang in there! This wather puts us Mom's all in a funk! Sorry about the stupid girl, we all would love to have a shot at her. I loved seeing the pictures and Jonah's big beginning, beautiful from the first day.

I am getting excited about Jonah's auction...... saving those penny's and excited to see it all up.

You inspire me even when in a "funk".

Claire said...

Oh, these photos are beautiful, sweetie. I'm sorry about the lady in Target.

Cxx

Sandy P said...

I have a question for you about the stares you get. Is it offensive when people ask why he has the sores? I guess it might vary by family, but I always wonder what the appropriate response is as a stranger. If I see someone in public I admit, I have a tendency to be curious. Usually, I just walk by and say a prayer. I was just wondering what your thoughts are on asking the family about the situation.

Linda said...

Hi Patrice:
Love the pictures. The sadness on your face is heartbreaking. Look how far you guys have come. Jonah is doing so well and it's all because of you, Matt and of course God's blessings.
Love you guys. Love Leah's Nana

Maythi said...

Can I just say that the picture of Matt leaning over you is one of the most beautiful, powerful pictures I have ever seen. We keep praying for all of you daily.

Tricia said...

The photos look great. Give yourself time to get back to doing these things you love. Time will be there eventually. My girls are in their teens and I am just now getting around to scrap-booking their lives. You have been so much in these past few years. Give yourself time. You are a great mom and right now you are spending your time doing the most important things. Blessings.

anneconover said...

I wish we lived closer. I would SO come over and help give you some "me" time. I would do anything with Jonah that I could. Holding a napping baby sounds like heaven to me, as does reading to, cuddling, entertaining, etc. I seriously need a grandchild....sigh.

The Goodman Family said...

I'm gonna be in your area on Friday, I think that I'm gonna park myself in Target until you come rolling through with sweet little Jonut so that I can hug & kiss on him!!!

My sister & brother in law are friends with one of your friends....can't remember who, but I'd LOVE to meet you and Jonut!

Hope that you're having a fantastic day!!! Stay in out of the cold & snow!!

Jennifer said...

LOVE the early pics. I had "missed" those as I was a bit later in joining the story (although still very early on). Love the photo books too. It is my goal this year to make two or three of them based on themes (birthdays, vacation, etc) and then one for the grandparents. It is super easy and so worth it! Hang in there Patrice! One day you will grumble because he won't get up (when he's a teen!). Jennifer ins Southeast, NC Where we have MAJOR WINDS but no snow!

Frances Barber said...

Any mother is going to be angered by someone who is mean to their child. I would have probably reacted the same way... Please try to "consider the source" and try to let it go(unfortunately, insensitive, stupid people are in abundance in this world). You're a wonderful mom to Jonah!
I'm praying for an early spring; this weather has been depressing. Hopefully warmer, sunny days aren't far away....
Keeping Jonah, you and Matt in prayer!

macynsmama said...

Hey! I have been reading you blog for quite a while now, but this is my first comment :) I read your post a few days ago about being in a funk and I just wanted you to know that I have really been praying for you! It's been on my mind a lot lately and just wanted you to know that. Ok, this may sound really weird b/c we've never met, but you are an inspiration to me as a mom..because of your honesty and strength you have as a mom! Jonah is truly blessed to have you for his mommy! Thanks for sharing with us!
Ashley
oh and by the way, I would have wanted to kick her in the teeth too :)

Robin said...

I was blog hopping tonight and found your blog. I am a mom of four and my husband is a church planter/pastor. I wanted you to know that when I found your blog tonight I stopped and prayed for you and Jonah. I pray that God will give you strength and peace. I am also praying that God's grace will over whelm your life. Your photos are beautiful, thank you for sharing.


On the diaper rash side, I don't know if you have tried it or not but we have had good luck using a&d ointment (not the cream style) when our boys were raw because of severe ecezema on their bottoms. The other thing that works for us to provide a barrier is actually lanoish (for breastfeeding moms). I don't know if that is something you could use with Jonah's EB or not but I thought I would mention them.

Praying you have a peaceful weekend and that Jonah and you get some much needed rest.

The Hessey's said...

Great pictures! He was so tiny and sweet!

PS..I keep thinking you need to brighten up your blogger background. It seems a little dreary and it doesn't fit your personality at all! I'd love to see your two cute little guys on something more upbeat and happy, like you. I only wish I could make templates, lol. Just a suggestion though...maybe coming to a little brighter, happier blog would help uplift your spirits too :)

Theresa said...

I just wandered onto your blog and fell in love with your sweet Jonah! He is beautiful in every way. You all are so blessed to have him in your lives. I wish I could meet him and tell him how lucky he is to have two wonderful parents who dote on him so well. I'm sure you must just want to kiss him all over all the time! Thank you for sharing Jonah's story - it reminds me that love and hope manifest in many different ways in our lives and it is a blessing from God every time. I pray that Jonah will live without the pain of his blisters, but in the full glory of God. Bless you too!