Jilly painted a picture of a heart for me
Jilly didn't want to cut up her pumpkin so she painted instead, her sisters were only allowed to watch
Here are Jilly and Haley getting ready to go trick or treating - Jilly is Dorothy and Haley is an Olympian soccer player - complete with all of her soccer medals
And here is the most beautiful Dorothy ever - with some leftover spagettios on her face
Jilly was doing some art work yesterday and was very proud of her drawing - I was too
3 comments:
That IS the most beautiful Dorothy I've ever seen! I love the drawing, too. It's really good!
She's an artist in the making! My Eli has the same easel and dry erase board...except his has planes and cars on it right now!
She's a beautiful Dorothy...but, you knew that already!
Dina,
Hello, this is Dave, Johnny’s Dad. I didn’t know another way to contact you other than through a post to your blog. But I wanted to reach you again and offer a sincere “thank you”. Words can’t express our true thanks to you for what you and your story have meant to us. And all the notes (comments) of encouragement you sent, each one was read and taken to heart. Each one lifted our spirits. And through your blog you got Johnny’s story out and we developed this wonderful little support group in cyberspace of other heart families that kept in contact with us and offered so much encouragement it was just incredible. You were such an encouragement to us, and in many ways you continue to be just that, as we follow along with Jillian’s story.
On January 17, 2008, an ultrasound revealed that our 26 week old unborn son had a congenital heart defect. That night, after our daughter was asleep, I was on the Internet, trying to find out as much as I could about what we were facing. One particular random search on google, I can’t remember the word I was searching, led me to your blog, and for the first time I met Jillian. My spirits were lifted. Here was the story of this amazing and beautiful little girl, battling her way through a 3-stage heart surgery, similar to what Johnny was facing. There was hope. Your words conveyed to me that it would not be easy. Actually, it sounded as difficult as anything a family could go through. But at the same time, there was hope. Jillian and this wonderful family, together, making the best of things, learning and growing from the experience, and moving forward to face the incredible challenges. I thought, “…maybe our family can do it, too”. Thank you so much for sharing your story. It gave us hope, and I am sure it has done the same for many families.
I returned to your site often during Johnny’s remaining pregnancy and the 4 months we were blessed to have him with us, and still follow along now and then. The recent pictures from Halloween are wonderful. Jillian makes a great Dorothy. She is truly a special little girl. And I also wanted to tell you that I am with you in your thinking about little Jillian. I read your post from July 21 way back in early August, not long before we brought Johnny back to the hospital for his Glenn surgery. It really moved me, and you have it right. Your post where you are telling a friend, “she’s not fixed…” and you are cautious about all the unknowns ahead. Some would say you are being too much “the cup is half empty” in your thinking, but I don’t see it that way. You recently had some similar comments in your post from October 14.
When I think back to our cherished time with Johnny, I am so thankful that we lived our days with Johnny against a back drop of not knowing how long we would have him with us or what might happen. We didn’t dwell on it to the point of having it rob us of the joy of loving and caring for him. It wasn’t to that extent, where it debilitated us. There was joy and happiness, despite all the struggles and anxiety of having a baby in the hospital for an extended period of time. And when we had him home with us, it was truly wonderful. But even during the easier times, when he was home with us and his prognosis was so positive, I think we always felt like every day he was with us was a real gift. It turned out that it was, all 127 days.
The reason you have it right, is that when we think this way, it causes us to love and cherish these kids with a fierceness and determination that may not come as naturally if these kids didn’t have this back drop of uncertainty in their lives. Each day with a heart child is a true gift, we know this all too well. All kids are precious, and in many ways there are so many terrible things that can happen to our kids these days, whether healthy or not, it should cause us to cherish and be thankful for everything about having them in our lives. But these heart kids live a little closer to the edge then most kids….and that’s what drives us to love and care for them the way you are talking about, and the way we loved and cared for Johnny.
So stay true to your thinking, I think it will serve you well.
We have some extended family living in Northern California. We don’t travel out there that often, but we would love to meet Jillian and your family sometime. I wish we could better convey to you how truly thankful we are for you and your story, and for little Jillian and how she has inspired us. Her beaming smile was a welcome sight for us back in January. Jillian and your family gave us hope and reassurance during a very difficult time, and you still do. Thank you for that gift, and all your encouragement along this journey. We are glad to know you.
Dave
www.dandlkids.blogspot.com
email: denyberg@mmm.com
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