happy halloween

Happy Halloween!

Love,

Jonah

(Click here to see how much I've grown since last year.)

bella

I wanted to repost here something that Tim wrote on Bella's blog regarding any uneasiness there might be in the "not knowing what to say" when you see them tomorrow, or even deciding not to come because of that:

One of the conversations on the blog I want to address is the worry that some people won't know what to say, either on here or in person. Don't worry about that. There are no words to say, just feelings to convey. If you don't know what to say, SAY THAT! In that moment of authenticity, humility, and vulnerability, we will be connected, and THAT is the point of words, really: to connect each other to each other.

Here's the thing: it is not the words that matter. It's the sentiment behind them that counts.

I'll say it again; It's not the words that matter, it's the sentiment behind them that counts.

Here is an example: If I say "THANKS" in a condescending way to someone for giving me poor service, is it the same as when I say "THANKS" to someone who just let me stay/eat in their home? Of course not. But, hey, I used the same word, didn't I?

I know this is a quick and dirty example, but the point remains. If you walk up to me, look me in the eye, and say, "I am so sorry for your loss, I just don't know what to say," and you mean it, you just gave me all you needed to give.

Here is another important piece of the puzzle (and by the way, this stuff goes for any person - not just us - that is grieving): don't project what you think we are feeling onto us. We are not the same, and each person grieves in their own way. If you would be devastated, that may be true for you, but it may not be the experience someone else is having.

Here are 4 reasons why I am not devasted by the death of our daughter Bella:

1) My faith. I believe that she is in heaven with Ang's and my dad happy and free, waiting for us to join them with great anticipation. In my heart I can see her smiling that giant grin in heaven, LIGHTING it up even brighter with her addition to the chorus of joy that exists there. True? Who knows, but it sure makes ME feel better believing this truth, so I do.

2) Bella is never going to cry in pain from EB again. That makes me feel very calm.

3) We've known that Bella could die at any time since the night she was born. There was no expectation for a happy and long life for Bella. That is why we went to Minnesota in the first place. With EB things start bad, and just get worse. Not every case of EB is that way, but Bella had one of the two rarest and most fatal versions of the disease, and not a day went by where it it didn't significantly impact her and our lives.

4) We began to grieve for her loss in the end of July/early August. Let's face it, we lost that little spark plug the day she was intubated. I never heard her speak again, I never saw her big smile, and what I did see of her eyes was a washed out, medicated shell of what I once gazed at. She lost all her hair, grew to an unrecognizable size, changed color, and even grew in different color eyebrows. All the while that I knew the spirit Bella was still there, that fun, angelic, smiling, laughing cherub was gone. July, August, September, 11 days into October. 99 days. My friends, the grief had already begun for Angelique and me long before Bella's heart stopped.

So, I share all of this to give you an insight into two things:

1) It's not what you do (say), it's who you are being (how you say it)

2) It is not as raw for us as you may think, so you can bring it up, you can break down and cry in front of us, it's okay. We've done it, too.

Finally, I think there is a pressure to feel like we have to be strong and support someone who is grieving. Like they need our help and assistance somehow. When we ourselves are grieving the same loss, and we find ourselves weak, how could we possibly support the person who lost their child?

These gatherings we are holding are not for you to come comfort us.

They are for us all to come together to comfort each other.

One level playing field.

Yes, we may be at the center of the field, but we are all on it (and in it) together. After all, is there a quantitative measurement for love? If you loved Bella, you loved Bella. Who cares from how far or for how long or in what capacity that love was borne? My point is once you have loved someone, when you lose them it will hurt. That is the price of love, and I for one am HAPPY to pay the fee every time, for the beauty of love always triumphs over the pain of loss.

So you don't need to be anxious if you are. I think Tim has confirmed that we're all in this grieving thing together. And please don't let it stop you from coming. We just want to get together, celebrate Bella, eat some good food, play on the playground, and hang out. No pressure.

Hope to see you there. You can just email me at momtobabyjonut (at) gmail (dot) com if you haven't already but would like to come. The more the merrier.

meet the Ringgolds (and Jonah!)

Hi Friends,


Something has come up and I need your help. 


Tim Ringgold (Bella's dad) emailed me yesterday and said that he, Ang, and Ali are coming here, to Winston-Salem, later this week. And Tim would like to have a get together between our two families and anyone else who reads either or both of our blogs and would like to come. It will be a great time of meeting one another, hanging out, and celebrating Bella and the love and support we've found in each other.


But we don't have much time! (Tim, you and your visionary spirit are KILLING me and my Type A/Planner personality... but I'll forgive you, this time.)


So, this coming Friday, October 29, please join us for a potluck dinner at Bolton Park Shelter at 5:00 (I'll probably be there a little early, and there's a playground right there, so feel free to come earlier). 


So...


What: a Potluck dinner celebrating Community and remembering Bella
When: Friday, October 29
Time: 5:00pm-7:30pm (or dark, whichever comes first)
Where: Bolton Park, large shelter


Here's what I need from you -
I have NO IDEA how many to expect. It could be 20. It could be 200. That's why I decided to do Potluck style, so no matter how many people come, there will be enough food. I'll plan on getting napkins, cups, plates, and forks/spoons. I need y'all to bring drinks, main dishes, sides, and desserts. 


Please email me if you plan on coming and let me know what you would like to bring. I just don't want us to get 40 Bundt Cakes and no real food, know what I mean?


You can email me at momtobabyjonut (at) gmail (dot) com and let me know. 


I hope we can see you there.

PS - If this doesn't work out and we don't get much response, we'll change it to BYOFF (Bring Your Own Fast Food) and everyone can just bring food and drinks for your own family. But I'd like to try the Potluck idea first, because dang it, we're The South, people, and that's just what we do. 


Looking forward to meeting as many of you as can come! Hooray!

taking it all back

I have A LOT on my heart these days and a lot I want to write out, here on the blog, but it seems I don't have adequate uninterrupted time to get my thoughts together and find a good starting place, so I guess there's nothing left to do but just jump in. It's against my nerdy straight A character to not have a good intro paragraph or an outline, but I just can't get a hold on any of it enough to start... so I guess I just ask God to give me the words and move forward.

I feel guilty when you guys call me an inspiration. It makes me feel like I've unintentionally duped you or have been dishonest. It makes me feel like I shouldn't write anymore because I don't want to put on a false face or make you think I'm someone I'm not. I am a decent mother. I am an inadequate wife. I'm not writing this so you'll leave comments to reassure or affirm me. Seriously, that is the last thing I want. I just want to be real. I want to represent Jesus with my life, and when I don't, I need to confess.

There are days Matt comes through the door and I'm snarling at him... or days he comes home and I'm barely speaking. And I don't know why. He hasn't done anything. I'm just bitchy and ill. It drives me crazy not being able to pinpoint it and it drives him crazy not knowing what to expect when he walks through the door. He is so amazing, y'all. I could not ask for a better husband and father to my kids. He had never even changed a diaper before Jonah was born, but it has not slowed him down. He has jumped in, from the beginning, with both feet, helping in Jonah's care, being an equal partner. He doesn't have expectations of me. If he comes home and the house is a wreck, I'm in a bad mood, and there's no dinner, he takes Jonah from me, straightens up, and happily settles for a bologna sandwich. 

So why oh why am I so difficult?

I'm saying all of this so you'll know that I struggle. S-T-R-U-G-G-L-E with how to be a good mother AND wife. The truth is, Jonah will one day go home to be with Jesus or will live a long life, grow up, and move out, and as much as I love him and want to care for him, I made vows and promises to Matt long before Jonah came along. When Jonah's no longer here, I want to have more than a shell of a marriage. I want a rock solid foundation of love, trust, and genuinely wanting to put the needs of each other before our own. I want to treat and love him like Christ loves me. I want to let him lead and be ecstatic about following and submitting.

But man, Satan claws his way in and makes me an arrogant, selfish, pompous ass, and it sure is hard to overcome all of that.

Depressed yet?

Never fear. Aslan is on the move. God is working. I am getting my butt kicked, and I LOVE it. I am so desperately thirsty and dried up, I'm devouring our Bible study book (Satisfy my Thirsty Soul by Linda Dillow) and the Bible with excitement. I am not a non-fiction girl. I've never been able to read these type books (except Blue Like Jazz... which happens to be laugh-out-loud funny and amazing) with any real enthusiasm. But I can't get enough. And it makes me hunger for The Word like I never have before. 

I am PUMPED!

And I'll tell you this (this post is all over the place... but that's not what I wanted to tell you), I am so sick of the stereotype of marriage being this "trap" where the husband is a lazy, aloof, selfish idiot and the wife is a bitchy, nagging, emotional basket case. (Okay, maybe I've been that wife a little bit, but that's not the point.)

Marriage is a gift. Children are a gift. LIFE is a gift.

And I'm taking my gifts back, thankyouverymuch. I refuse to live a mediocre life. When did life become about longing to make it to Friday, complaining to anyone who will listen on your Facebook and Twitter pages, and only seeing the negative??? (Hello Kettle, I'm Pot.) Ugh. I hate it. I want the fullness and promise of what God offers... and it's not just the promise of Heaven and Eternal Life. I mean, sure, I'm excited about that, but WHAT ABOUT RIGHT NOW?

We have been given so much more than a life of mediocrity. Everything we have or don't have. Everything we've been given or have been denied. We can use that to praise God and enrich the life we have right now. Gabe died. That sucked. Jonah has EB. That sucks. Like 90% of parents who've lost a child and/or have a child with special needs get divorced. That scares the living you-know-what out of me.

But y'all. I have Jesus. The things that have happened in our lives have brought me to this place - this dried up, oh-so-thirsty, what am I going to do place. 

Praise God!

For this reason I kneel before the Father, from whom his whole family in heaven and on earth derives its name. I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God. Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

I'm empowered. He dwells in me. His love is beyond my wildest dreams. He can do more than I ask or imagine. I can have fullness, contentment, and complete joy in this life, right now, in this very moment. (mouth agape)

I'm working for that, folks. Scratch that. I'm accepting that gift, folks. I'm asking my Abba to bind up Satan, take away his foothold, and I'm accepting my Father's unimaginable love and unending grace. 

I am his beautiful and perfect daughter, and I deserve more than mediocrity.

I'm taking my life back. Care to join me?

(to be continued...)

meeting ella!

Last Friday, we had very special visitors. Ella and her beautiful mom, Katie, came for a visit. Ella has Recessive Dystrophic EB, and Katie was one of the first EB folks to contact us after Jonah was born. Katie has been a constant source of support and love (and a POSITIVE outlook) for us, and it was SO AWESOME to finally get to meet them. They were down here from DC visiting some family in Durham. 

We got to enjoy a great walk with the kids. It was a beautiful day. 

 Sweet Ella. Three years old with the vocabulary of a nine year old. :)

The four of us. (Jonah playing with Katie's earring... no concept of personal space.)

It's nice to spend time with someone who really gets what your life is like... not just the physical requirements of EB, but the emotional ups and downs of being an EB mommy. We didn't really have to do introductions or small talk. (I did cry a little bit, but that's kind of my thing. When I apologized for crying, Katie said, "Don't worry. Crying is my spiritual gift." Ha ha. I'm stealing that one!) We just got each other. And Ella is just as amazing as Jonah and Weston (an EB not-so-baby we met last year). The strength and determination of these EB kids young people (sorry, Weston) continue to blow me away.

We love you, Katie and Ella. Hope you come back down our way soon!

home again

We're home from Elizabeth City. I'm glad to be home but sad to not be with Katie. It was hard and sweet and terrible and beautiful. She's lost her hero and one of her best friends. I didn't know her dad that well, but I can't believe how deeply you can feel loss and sadness and mourn with and for your friend. I'm so sad for her whole family. 


Jonah snoozing on the way down... a whopping 45 minutes of the four and half hour drive.

 Jonah, cute in his collared shirt at the funeral home. Post bloody nose incident (don't ask).

Jonah did pretty well in the car on the way up and back, but last night and this morning (dressing change) were rough in the hotel. He slept restlessly for a couple hours when Matt first put him down and then woke up screaming around 11:30 or midnight. Well, you can't let your kid cry it out in a hotel, so we got him out to try to "rock" him to sleep. It backfired. Homeboy woke up and was WIDE awake in our bed, kicking, talking, laughing, jumping on us until 2:00 am. Rough. 


But it was completely and totally worth every minute. Matt was awesome and really took over Jonah Care so I could be with Katie as much as possible. We spent some time together at the funeral home, afterwards at her house, I sat beside her at the service today, and maybe another hour this afternoon, sitting outside on a blanket, before we left. So thankful. And I'll never forget when Gabe died, how it felt to hug Katie when we saw each other at the funeral. Yesterday and today, I needed to be there just as badly as she needed me to be. It's a sweet co-dependence we have goin' on. :) 


Thanks for all your continued prayers for Katie and her family. I know, from my grief with losing Gabe, that some of the hardest days are once everyone goes home, your family scatters, and your house is too quiet.


Thanking God tonight for true friends and the bond of Jesus and his promises. I love you, Katie.

last weekend

Last weekend, Matt's parents came and Granny watched Jonah so Grandaddy, Matt, and I could work out in the yard. We've lived here for three years and have planted a couple dogwoods but I've been wanting to plant shade trees for a long time. So we finally did it... now all I have to do is keep them alive. Ahem.

We planted two inside our fence. A maple...

And a peach tree. Matt hates peaches. His wife loves them. Guess who picked out the trees?

Here's our backyard from our deck steps. That's Gabe's garden in the back.

We planted two in the side yard (we live on a corner lot). Another maple...

And a flowering plum.

And two in the front. A Flowering Cherry...

And a cute little River Birch. 

Our cute little house. We put the fence up in the spring. Southern Living, you are KILLING me.

The left side (used to be just grass).

The right side.

Our steps decorated for Fall.

Oh yeah, we have these wildflower seeds from Gabe's funeral that I never planted. So Gerry did this little raised bed just for them. We put some Mums in it just so it wouldn't look so bare...

but hopefully in the Spring, we'll have pretty wildflowers. We'll see.

We also planted lots of bulbs. I'll be excited to see how it turns out. (Or I'll go into a spinning depression if they don't come up... Just kidding... sort of.)

____________________________________

I'd like to ask for prayers for one of my best friends, Katie. I've blogged about her some. We're super close and were college roommates. Anyway, her dad suddenly and unexpectedly died early Friday morning. He was 53. Matt, Jonah, and I will be heading to Elizabeth City Tuesday afternoon so that we can be there for the visitation Tuesday night and for the service Wednesday morning. I just need to be there, ya know? Anyway, it's kind of a whirlwind trip so I'm in packing/planning mode, but I'm happy to have something I can DO. I can't wait to hug her. So if you could be in prayer for her, her mom (Blanche), and her brother (Jimmy), it would mean so much. Thank you.

a funk and a cute baby

Hi Friends,


I have a heavy heart tonight and I'm just in an overall funk. I miss Bella. I'm aching for Tripp. EB sucks. 


Other than that, we're doing okay here. Jonah is doing well and recovered fully from his croup after four days or so. We try to do some food by mouth at lunch, and he's been doing okay with that. I can usually get him to eat two to four ounces by mouth, but often times, it's a struggle. He's napping a little longer during the day and sleeping well at night. The pump is still false alarming at night and waking us up, but Jonah is really trying to give us solid sleep. 


I'm loving my book/Bible study and I'd talk more about it right now if it weren't for my aforementioned funk. It's hard to talk about how you're learning to love better and bow your life in worship when it's been one of those days when nothing's happened but everything pisses you off. It was one of those days where you open your bathroom cabinet and everything falls out and you say a cuss word and shove it all back in. You scream at all your disorganized crap just because you feel like it's better to take it out on your hair dryer cord and your box of tampons than your family. Although your husband might argue you should have yelled at your q-tips too... he probably thinks he got their share. I don't really know what I'm talking about. I'm just sad and frustrated. But tomorrow is a new day.


And Jonah is THE BEST. I'm serious, y'all. I could not be more in love with this kid. He is the light of my life. 

You're smiling, aren't you? It's okay. It can't be helped.

Bella

Anabella Claire Ringgold

May 27, 2009 - October 11, 2010

Sweet Bella passed away yesterday afternoon. Please carry her family in your prayers as you go through your day and upcoming weeks.

You can read about Bella here, on her blog, if you haven't already been following her story.

jonah draws

We've tried coloring a couple of times but Jonah has never been able to put enough pressure behind his coloring tool to really get it. We switched from crayons to pip-squeak markers, but when he'd try, the paper would move with the marker. Well, today, I let him color on the back of a thick paper plate, and it clicked.


Jonah draws for the first time:

He thought it was really funny.

Checking out his work (closely).

Washing out his mouth after he decided to color his lips and teeth (twice). 

Hmmm... I wonder...

Yep, I CAN color on my shirt. Good to know.

Coloring with his markers.