First of all- I am getting the sweetest comments and emails from readers asking for an invite to this blog when we go private.
I went back and read my post from the other day and realized it was poorly worded...so to clarify: A Perfect Lily isn't going private, our family blog is. I've had some ugly comments and emails thrown my way recently. To the point that I feel it's better for our family's private life to stay, well, private. So if you would like an invite to that blog, please send me an email. I'm trying to limit those invites to people we know in real life, but if you've been a reader for a long time, state your credentials and I'll try to squeeze you in. Name, date of birth, social security number, political agenda...ha. Just tell me who you are and I'll try to send you an invite. And if anyone knows if there is a way to send more than a hundred invites to a private blog on blogger, let me know. I'm almost maxed out at this point: apparently you don't have to live in Arkansas to have a multitude of extended family members ;)
Moving on...yesterday morning I was praying for direction about life in general, and blogging in specific. I really don't want to blog just to blog, and if you do it for fun, and you have the time to do it for fun, good on you. But as a mommy to ten, and nana to one delicious grandbaby, my time is extremely limited. So I've been getting some priorities in line here, and praying for wisdom on how to proceed with life as a blogger. And this is probably going to sound like I'm fishing for encouragement, but I assure you, I am not. I just really, really want to make sure I am putting my effort and time into something that is uplifting and useful, because quite honestly I am way past the point of blogging as an outlet for my emotions regarding Lily's diagnosis of Down syndrome. I'm sure as Lily grows older, other issues will come up that I will feel the need to "hash out" through writing, but at the moment the need is not really presenting itself.
Sooo, as I was praying yesterday for clarification about what to do...I had a little email come to me.
I'm going to copy it here in a moment, and thank you, Julia, for giving me permission to do so. Last month Julia sent me a photo of her son, Gabe, for our Mother's Day slideshow. Gabe was having a very hard time recovering from his open heart surgery, and Julia hadn't seen him awake for a month.
I asked Lily's readers to pray for little Gabe- it broke my heart that his mama had not seen that beautiful smile for a month.
Shortly after that post, I received an email from a New Zealand reader named Kylee...
My name is Kylee Walsh and i come from Auckland, New Zealand. I recently had a most beautiful baby girl in February of this year and she has DS.
I would like to say your daughter is absolutely gorgeous and the images of her are just divine!!!!!!
I will get straight to it. Our daughter Charli has a condition called Hypo Plastic Left Heart and i noticed reading your blog about the wee man Gabriel who is currently in hospital???
I would love to be in contact with this family, if possible. I know it may not be appropriate for them, but if there was anyway you could pass on my email address i would be soooo grateful. Charli's heart defect isn't common here but with the DS attached - it is. Unfortunately in NZ, when most people find out they are carrying a baby with Trisomy 21- they terminate. As this is one of the worst heart issues to get, i have found no-one else who's child has HPLH and DS combined.
It is an extremely challenging time for us and to know there is possibly someone out there that i could talk/ relate to and support - would be wonderful!!
Kylee and Charli
I forwarded Kylee's email to Julia...and here's what Julia sent me yesterday:
I wanted to get back with you and let you know how incredibly amazing your blog post was about Gabe.
I told (Kylee) about Boston, MA and Dr. del Nido and the miracles he is doing in babies like ours who would otherwise have no hope for survival. I sent her the other families names and had her get in contact with Boston's Children's Hospital.
She got word back that Dr. del Nido is confident that he can repair her little one's heart in one surgery. Now they are preparing and fundraising to get to Boston in the next 2-3 months to get their little one, Charli, the gift of a whole heart.
I wanted to let you know what an impact you made, just by posting Gabe's story on your blog, you helped save a little heart.
Dr del Nido does what no other surgeon in the world does, fixes little hearts who otherwise would be given a very short life.
I am so thankful for you!
P.S. Gabe is doing very well, he had to have an extra surgery since he didn't wake up from his last surgery, but now he is awake and working on getting his muscles ready to be unintubated again.
He is doing amazing :)
|Gabe, awake and recovering :)|
To say that I needed a boxful of kleenex after that email...which came to me just minutes after an intense prayer session...is an understatement. I'm not a perfect person, or a perfect blogger, or a perfect Christian, but I do have a passion for children with Down syndrome. And if my little blog can help one little girl with an extra chromosome and a beautiful smile on the other side of the world...I am a happy mama.
I asked Charli's mama for permission to use Charli's photos and story here...she sent me this:
You are sooo welcome to use my story/photo and i actually owe it ALL to you! If it wasn't for your blog, we wouldn't be on the road to fixing Charli's heart :-)
Julia has been soooo kind, friendly and helpful to us and as any loving parent would do - we are fighting for our girl.
Pretty SCARY, but we find out in the next few days what the cost of Charli's surgery will be - gulp gulp!! Fundraising, here we come!!!
We feel so much love around us.
I asked Kylee to send me a link to any fundraising page her family sets up for Charli, and I'm waiting to hear back. I would love to host a fundraiser myself for her family, and if any of Lily's readers feel led to donate a big prize for that, please contact me via email.
And now if you'll excuse me, I have some priorities to attend to !!