birthday, part 3?

I’ll have to break the party/birthday day photos up into a couple posts, because I took a lot, and I need an editing break. Plus, I think I’m about to crash blogger and my computer. We all need a break. :)


Jonah was great for his “party.” I use that term loosely only because it was so laid back and relaxed, it didn’t seem like a party. Which was a good thing. Jonah had a GREAT time hanging out with his grandparents, aunts, uncles, and cousins, and I loved having everyone here to celebrate. We ordered barbecue for lunch (if you’ve never had NC barbecue, you’re missing out), and had cake. Other than that, there was a lot of hanging out outside and playing basketball and baseball (not by me, don’t be silly).


Jonah wasn’t sure about his cake (as you can see in the video a couple of posts down) and he wasn’t really interested in presents, but he was in such a good mood. The child LOVES to be outside, and I’m already worrying about summer. He’ll be old enough to know he wants to go out, but not old enough to know why he can’t. Yuck. I wish I didn’t hate summer. But enough about that. We had a beautiful sunny day with highs in the upper 50’s. It was a little cool in the shade, but I prefer leaning toward the cool side for Jonah’s sake. He was in Heaven. I’m so happy to have gotten to celebrate his birthday another year. I do NOT take it for granted.

** Jonah got his adorable "2" shirt from my friend Meredith. She has an Etsy store HERE if you'd like to check her out. I don't think she has any photos of the birthday shirts up, but I'm sure you can contact her through Etsy if you are interested. WE LOVED IT! Thank you, Meredith!**

I wanted to let you guys know about a couple of things.

-         Jonah’s EB Auction has come to a close, and the preliminary total, before payments, was over $6,200. Amazing! Thank you so much to those of you who donated, participated, and/or helped spread the word. So exciting!

-         There is a new fundraiser over on Hope for Anton. Usborne books! If you are a parent, teacher, daycare provider, or grandparent, you will love this one. High quality, award winning children’s books (up through middle school age), with a portion going to Anton!!!

-         Today is National Rare Disease Day. If you would like to donate $5 to the bone marrow research that’s being done at the University of Minnesota, you can text “BELLA” to 50555. The research they are doing there could lead to cures, not only for EB, but for other rare genetic diseases! I am excited for the opportunity to honor Sweet Bella in this way.

I know that’s a lot of “money talk.” Sorry about that. I just want to make sure I get the info out there. You can do with it (or not) what you will. :) Thank you so much for being with us on this journey and for loving our little family. We are so blessed!

bella's eb gathering

I'm so sorry for taking so long to blog about Friday's EB Gathering. It was so great to finally meet the Ringgolds and get to celebrate Sweet Bella. Our time was rushed due to the impending dark, but it was great nonetheless. Tim's sister lives in Winston-Salem, so I hope we'll be able to spend more time together some time when they come back this way and we have more time. Tim and Angelique are just a class act, and Ali is so funny. And I can't speak for them, but no matter how little time we got together or how little we got to say, we are connected in a way that most can't understand and need very few words to feel like family. 

Thanks to all of you who came out to meet us. It was so great to meet so many of the people who have been following our story and praying for Jonah. I had so much fun and hopefully we can plan something for the Spring when our days will be a little longer, but the weather will still be cool enough for Jonah. I'd love to do it again!

Here are a few photos from Friday.

This first one is mine.

The rest are my photographer friend, Jenn's. She also took the photos for Jonah's birthday party.

You can see the others at Jenn's photography site, Photographic Memories. Click here to see the rest. Thank you so much, Jenn. Beautiful as usual!

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!

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.

title goes here

This will be quick because I don't have a whole lot to talk about, and my sister has my camera this weekend so I don't have any new photos to fill up blog space. BUT...


We've had an okay day. Jonah's been fussy and a little frustrating, but I guess that's in typical not-quite-toddler fashion. We got up and did dressing change, fed Jonah, and then headed up to Stone Mountain to visit with my Maw-Maw and Paw-Paw. My brother and his kids and my dad were all going to be up there today, and I have been wanting to take Jonah for a while, so it was a great time. We had a nice lunch and got to hang out a little, but we had to stay inside while the kids went on golf cart rides and to the playground, so we missed out on some good family time. Meanwhile, back at Maw-Maw's cabin, Jonah was fussy, clingy, and an all around a pain-in-the-patooty. So we cut it short and headed back home. He was overly tired because he had only slept 45 minutes on the car ride up there, and he's always pretty ornery in a new place.


Peyton and his kids (ages five and three) came into town on Thursday night, though, so I had gotten to spend some quality time with them before today. Peyton came yesterday morning, while my mom took the kids to the park and library, and helped with dressing change. Then I went over to my mom's for a late lunch on Friday and hung out with them and the kids. Last night, Matt and Peyton kept Jonah and played a couple games of chess (Matt is a very good chess player, and he says that Peyton is a smart player and good considering he hasn't played that much) while Mom and I took the kids to see a local performance of Peter Pan the Musical. It was fun, and although the kids were a little restless at the beginning, they really liked it (it was three hours long - they did GREAT!).

That's about it for our weekend so far. We hope to make it to church tomorrow, but don't have any big plans. It is still SO HOT here, and I'm praying for relief soon. I'm fairly certain it got to 100 degrees here today, and you'd think it would have been cooler up in the mountains. You would be incorrect. And the humidity is just so bad. You just feel damp and sticky as soon as you walk out the door. Gross. And impossible for Jonah.

Please say some extra prayers for Daylon and Bella tonight. Daylon's had some bleeding on the brain and a seizure from a trial medicine he's having to take to prevent a potentially fatal condition (VOD) from getting worse that has resulted from Transplant. So far, they've been able to avoid surgery (which would hold GREAT infection risk for him) and have stopped the medicine and increased his platelets in hopes to thicken his blood. Bella is on the same medicine for the same condition. Both of them are on continuous dialysis because their kidneys aren't functioning, which thins the blood further. VOD is potentially fatal. Kidney failure is potentially fatal. Stroking from this medicine is potentially fatal. Nothing about this transplant is easy. Please be in prayer for both of them. As always, many thanks for the prayers, love, and support for all the EB Sweeties.

praying...

(Unrelated) Addition: The National Geographic Channel (276 on DirecTV) will be airing Extraordinary Humans: Skin this afternoon at 4:00 EST. Half of the episode is on a child with EB and half is on a child with Icthyosis, another rare genetic skin disorder. We actually have a friend, here in town, who has Icthyosis that we met after Jonah was born. Please watch or DVR if you can. Sorry for the late notice.

If you don't know much about the Bone Marrow Transplants being done as a (hopefully someday soon) cure for Epidermolysis Bullosa, please see Bella's dad's most recent post here.

It is amazingly clear, easy to understand and walks you through the basics of the process (as well as the risks). But he also does a great job of expressing the emotion that goes along with this journey they're on and how faith will see them through.



Daylon (the first JEB child to go through transplant) will undergo his transplant on Thursday of this week. He's already been undergoing Chemo for eight days (I think), so you can imagine the tough time he's having right now. He gets a one day "break" (tomorrow) and transplant will be on Thursday.


Bella is being admitted to the hospital today, and will begin treatments immediately. She will begin anti-seizure meds (to counteract one of the chemo drugs) immediately and chemo will start tomorrow. Her transplant is scheduled for July 2nd.

I know I've already asked for prayers for these kids, but I want you to really understand what they're about to go through and the toll it will take on them and their families. I want them to know they are not alone... so please, I'm begging you, follow their stories (here and here) and keep lifting them up. This is a very long road they are about to travel. Assuming best case scenario, the kids' immune systems won't be back to normal for a year. And the stay in Minnesota will be four to six months at best.

I know we've never met, but I love you guys.

Praying for healing, strength, and peace...