Thursday, October 28, 2010


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.


Sara said...

As someone who has been in Tim (and Patrice's) shoes, I just tell people: treat me the same and if you never met me, just act like you normally would when meeting someone for the first time. And while words aren't important, being there is. Even almost 6 years later, not only I can tell you every person who attend my son's funeral (or related events afterward) and everyone who emailed or wrote. But I also remember who wasn't there or who didn't call/write. Your presence alone will speak volumes even if you have no idea what to say:)

Wanda Wilkinson said...

Sara said it all--just our presence & maybe a hug will say it all.

so excited that I get to see Jonah tomorrow afternoon--Toys r us are in my vision this afternoon (ha)

Love ya

Trennia said...


Katherine @ Grass Stains said...

You know I'd give anything to be there. My love to all, and please take pictures!

Sophia said...

It would be so much fun to come and meet everyone. Unfortunetly we just live too far away.

Maria said...

If I could afford the air fare from Australia, I would be there in a heartbeat.

Please give Jonah and Bella's parents a big hug, and hugs to you and Matt too.

And please take pics to share with us who live across the seas and can't be there (pleeease).

Janel said...

I'm sure you guys know how sad I am that I can't be there. :(

In spirit - with cake!

Love you guys!

Elle's Family said...

I am so glad you will be getting together with the Ringgolds and other EB families. We miss them at UMMC and think of them. I also follow Jonah. You just have it all together and I am so impressed! Baby Elle's Mama, Becky

Sandy said...

Can't wait to HUG the Ringgolds.

The Oxford Family said...

"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."


Laura A said...

Wish I could be there to meet sweet Jonah, but am looking forward to meeting the Ringgolds at the Dallas gathering! Hope you all have a wonderful time getting to know each other, comforting and encouraging each other, and remembering Bella.

And eating :)