a haircut and cute pj's

On Monday morning, Shannon, the AWESOME lady who cuts my hair offered to stop by on her day off to cut Jonah's hair. I had told her about him and how I was concerned about taking him somewhere and someone mishandling him. So she offered to cut it for me. Y'all probably can't tell it's been cut. She mostly just took some length off the very back. It needs to be cut a little more, but as you can see, he was not amused. He only allowed (and I use that term very loosely) it for about three minutes.

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And these are from tonight. Cuteness in his baseball pajamas.

Crazy Aquaphor Hair.

Is that lint?

Yep, that's lint alright. That's what I'm talkin' about.

So close to crawling. So close.

being part of the Body

These videos are from Sunday a week ago. We were having a special "I'm In" service, a recommitment to being actively involved at Pinedale, but more importantly committing to truly being an active part of the Body of Christ.

It was very powerful.

After a few testimonies of how God and the Body of Christ had worked in several people's lives, we gave our testimony as to how the Body of Christ has helped us through.

(These videos are long, so I would press play and then immediately press pause if they are lagging and talk amongst yourselves or surf elsewhere while they load and buffer. Then press play again.)

Oh yeah, please excuse the shakiness. At the beginning Bill (our preacher) asked Jonah's parents to stand up wherever we were (we were up in the balcony) so I put my camera down by my side (while still recording) while we stood. Sorry. (The rest of the shakiness I have no excuse for. I was just shaky.)

This one is the Cardboard Testimonies. I had seen online video of it from other churches, and loved it, but it is even more powerful when it's people you know and love personally.

The girl singing, Katelyn, also sang at Gabe's funeral. She gives me chills.

My good friend, Gina, who I have mentioned on the blog often (owns the diner with the good chicken stew, was the ring leader in decorating the basement, organized meals for us, helps with dressing change, got drinks donated to Jonah's party etc.) is the one who was healed from stage three cancer and does an "oh yeah" dance when she flips her card. I love her. :)

This is the song we sang directly after the Cardboard Testimonies. It's Chris Tomlin's version of Amazing Grace. I recorded it because this is one of the two songs I sang for Jonah ALL of the time during our long days in the NICU. I thought it was divinely fitting that it was the song that followed the testimonies. I'm sure others would say the same.

The woman singing at the beginning is Aimee. She also has an AMAZING voice. She is the one we were planning on keeping Jonah before we knew he was going to have so many special needs. She still helps me with dressing change every other Monday, and is one of the many women at Church who have been a huge support and saving grace to me.

I know I can't do justice to the service by just posting these few videos, but I hope, if nothing else, it makes you realize (if you don't already know) the power of being part of the Body of Christ and having a Church family of your own. I can honestly say that I don't know how we would have come through Gabe's death and Jonah's challenges without our Pinedale Family. They have truly been the hands and feet of Jesus to us. I know we're exactly where we are supposed to be. THANK GOD!

jonah's first fort - thanks, daddy!

I am still not feeling well, but don't worry... Jonah is in good hands.

Fort and all. (I took a nap this afternoon, and this is what I woke up to.)

"Okay, I'm done now. Pleeeaaase get me out." (More fake crying.)

Matt tweeted a cute one here too.

And Granny (Matt's mom) is on her way to help the next couple days since I'm still not 100%. Too bad I can't get a break from dressing change. Being sick AND the mama STINKS. Hoping to feel better soon, and still praying that Jonah stays healthy. I have to be so in his face all the time, I have no idea how he could NOT catch it.

a funny

It was Matt's turn today to keep Jonah out in the lobby during the sermon.

Matt said a kid, probably about nine years old, came up to him.

Kid: (Asking about Jonah) "Why does he have that all over his face?"

Matt: "He has a skin problem and he gets blisters on his skin."

Kid: "Oh. Is he like Jonah?"

Matt: "This is Jonah."

Kid: "Oh.... Hey, Jonah!"

Kid runs off.

Matt told me afterwards, and I just burst out laughing.

At Church, EVERYBODY knows Jonah, even if they don't really know Jonah.

jonah's amazing cake

UPDATE: Here is the link to Janel's Cake Fan Page (Crave Confections) on Facebook. Check it out! She's posted lots of photos of other great cakes she's done. I still like Jonah's the best though. I could be slightly partial.

So the cake...

I have been meaning to post this forever, but just hadn't gotten around to it.

Janel is a bloggy/EB friend that I "met" after she found my blog shortly after Jonah was born. I had never even met her in person until the day before Jonah's birthday. She has RDEB, but is married, in her thirties, and has a sweet little girl!

She says she bakes and decorates cakes for a hobby, but she is AMAZING. Janel and her family drove all the way up for Jonah's birthday from FLORIDA, and Janel made this beautiful, wonderful, perfect cake for free. Did I mention she's amazing???

Almost there.

Check out the detail.

The Final Masterpiece.

The bottom layer was vanilla cake with buttercream icing, the animal layer was chocolate with buttercream icing, the games layer was carrot cake with white chocolate cream cheese icing, and the top layer was white chocolate with white chocolate cream cheese icing. The whole thing was covered in fondant, and everything was edible.

Pretty incredible, huh? 

Jonah checking it out.

Jonah's Smash Cake (which he barely touched... cake is, after all, a solid.)

"Ready for my cake, Mom."

Jonah looking like he was trying to blow, but really just reacting to me blowing in his face.

Only a small portion of the Paparazzi.

It was almost too pretty to cut, but we quickly got over it.

So, thank you, Janel. What a beautiful gift. It was unforgettable. Thank you so much for blessing our family. We're so glad to now call you a "real life" friend. Hope to see you again very soon. (And by the way, Matt said it was the best carrot cake he'd ever had. And he does NOT play around when it comes to dessert.)

prayer request

I was planning on posting tonight, but it appears I am most definitely getting sick, so I think I'm going to bed early to try to kick it.

I do ask for prayers that Jonah remain healthy. I'm going to wear a mask tomorrow if I'm still feeling bad, but I'm still concerned he's going to catch it. A severe sore throat and congestion could be hard on him, especially on the eating/nutrition front. And although I can do Airborne and Zinc tablets for myself, I can't really do any "virus shortening" stuff for him.

Matt being sick was bad enough, but I don't really have the option of being "hands off" with Jonah.

Thanks :)

don't be hatin'

My heart is kind of beating fast in my chest as I begin to write this post. I don't know why. Well, yes I do. I'm taking my all about Jonah, all about our little life, cute pictures, sweet videos blog somewhere I've never taken it before... into the realm of politics (but not really). I know why I'm nervous. I don't want people to assume things about me or judge me for writing this. I don't want it to change your opinion of me or to make you think badly of me. I don't want those of you who come here just for the cuteness that is Jonah to have to read something you'd rather not. (So stop reading now if you are rolling your eyes.)


And I feel like an idiot for feeling that way, because I know what I am saying is fundamentally right and I feel like God is calling me to write it, so really, nothing else matters. Maybe I'm overreacting anyway. I don't know.


Here it goes.


I support healthcare reform.


(Holds arms up to block fire lit arrows that are careening down upon me.)


This is not a post in support of the new healthcare bill. It is not a post against. It's not about that.


It's not about the bill. It's about some of the extreme attitudes, broad statements, and hate surrounding the bill. I can't stand it. Really, it makes me feel all tight in my chest. I hate the hate. I can't stand it.


I hate the absolute statements that are being thrown around like "government takeover" and "my tax money paying for lazy people who don't want to work" and "conspiracy."


I know that people have concerns about many things - more government control, the manner the votes were obtained, tax increases on the wealthy, the effect on insurance premium rates, the possibility of waiting lists etc. I don't want to argue those points. That is not the point of this post.


The point is I hate the hatemongering. I hate the lies (or twisting and stretching of truths) to make people hate. Did I mention I hate it?


The truth (in our situation) is this:


Not all people who need government assistance are lazy people who don't want to work. I had to give up my job (and my health insurance) to stay home with Jonah. Not because I'm lazy and don't want to work but because I have to take care of him. My circumstances require me to stay at home. Jonah is on Matt's insurance. We decided not to put me on his plan because it was going to be way too expensive. So I now I pay for a sub-standard plan out of pocket and have a $5,000 deductible before it kicks in. Jonah FINALLY qualified for Medicaid after eight months of us jumping through hoops and struggling to pay our bills. And that is WITH insurance. If it hadn't been for donations from people who, for whatever reason, love us and care for us and for the help of generous family members, we could have very easily gotten in trouble (or had to sell our house) while we waited.


What if Jonah hadn't qualified? What if Matt were to lose his job? What if we couldn't pay the COBRA payments (which are RIDICULOUSLY high) and Jonah had a lapse in coverage? What if the next insurance company wouldn't accept him because he has a preexisting condition? What would we do?


I am very thankful for government involvement.


If it weren't for government assistance, Jonah wouldn't have a nutritionist, an occupational therapist, or a physical therapist. (Well, he probably would but we would be in very bad shape financially.) Jonah qualifies for those programs. We receive them for free. I am thankful for them. Jonah has Medicaid that covers our copays and prescriptions. I am thankful.


I am thankful that he won't be denied because of his preexisting condition.


Many of the families who need help are like us - forced out of work because of circumstances beyond their control - just trying to take care of their kids, their families, just trying to survive the hand they've been dealt. Many of them are not as fortunate as Matt and I are to have the resources and knowledge to apply for help in the first place. Many of them do not have family or friends making donations to help them get by. We are so blessed. We are the fortunate ones.


So please, before you make blanket statements about the people who are receiving the benefits of your tax dollars, think about situations like ours. It is so hard. And you just don't know until you've been there. (I definitely know that people DO take advantage and there are things about the system that are VERY messed up, so you don't need to argue that point. Believe me, I know.)


For me, it boils down to this. I want to be compassionate. I want the hatemongering to STOP. I want the fear tactics to cease. I want people to stop being so prideful long enough to listen to each other. I think Jesus calls us to take care of the sick, the hurting, and the poor. I think he calls for us to pray for our government and our leaders, whether we fully agree with them or not.


Whatever comes from all of this, whatever it entails, God knew it before it happened. He will carry us through it. It is not, unless he has planned it to be so, the end the world. And if it is, then I'm one step closer to seeing Jesus and my baby Gabe.


We need to discuss, listen, share, have open minds, but most of all LOVE. Nothing else really matters.


Try to see some good in things, even if you don't agree with all of it. And please, for the love of God (really), stop with the hate already.


It's making me sick.
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On a much lighter note, Matt's mom kept Jonah this morning so I could get my hair cut today, I went to my first therapy session, and my mom kept Jonah tonight so Matt and I could go out to eat.

I got spoiled!

Here's my new do.

(Sorry for the dramatic sassy face look. It wasn't my intention... I just felt like a doofus smiling at my own cell phone.)

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I'm cutting the comments off now before things get uglier. I was so encouraged by the positive sharing of views and LOVING tone of everything at the beginning, but OF COURSE it had to get nasty toward the end. That is so frustrating, guys. Really. I'm disappointed. If you can't say things in a loving way, just keep your mouth shut. This was a post on NOT hating. I guess I should have known though. Oh well. Thank you to the 98% of you who were loving and kind. I know you are in the majority.

some photos from the weekend

Some photos from the last few days.

I've been so happy to have my Daddy at home for a four day weekend.


Daddy tickled me in this one. He is very tricksy.



You can't read my shirt here, but it says, "Daddy and I agree. Mommy's the boss." Dad saw it in the store and said that we definitely had to get that one. (Mommy's only slightly amused.)


(Sorry about the wonky coloring on these next ones... they were yellow and Mommy tried to fix them... unsuccessfully. And then she decided she valued sleep too much to keep working on them.)

Here I am playing on my new mat. Mommy ordered it on Amazon. She thought I needed something firmer to practice pushing up.


Mommy bought this toy for me with a Target gift card I got for my birthday. At first I was scared of it, but now I think it's the coolest.


I'm trying to get into the crawling position all the time these days. And then, when Mommy helps me get there, I cry at the pure injustice of it all. (My leg is still stuck underneath me here. This is where I get stuck every time.)


Hey Mom, what's that you got there? (Bless my heart. I just don't have a single toy at my house, as you can clearly see.)



Is that what I think it is? Is that a... a...


Ohhhhh, a camera.


Gimme, gimme, gimme!


Seriously, gimme.


(Fake crying). You are the worst Mommy in the whole world. How could you deny me?


Hey look, it's my burp cloth.


What were we just talking about?


Oh yeah, your camera. Ohhh, a camera strap.


Wow, Mommy. Thank you so much. You are the best Mommy in the whole world.

The End.