Tuesday, June 12, 2012

clarification

Hello Tuesday readers...I know I said that posting here on A Perfect Lily is going to be a bit sporadic these next few months, as we pack up the Rice Ranch and head to a new home. (And it is going to be.) But I have a few things to address that are important, so here I am for the second day in a row this week.

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...


Hi Patti,

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!!


Many Thanks,


Kylee
and Charli

xx






I forwarded Kylee's email to Julia...and here's what Julia sent me yesterday:





Patti,

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!

Julia

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.


Beautiful Charli

I asked Charli's mama for permission to use Charli's photos and story here...she sent me this:


Hi Patti, 

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.

Thank-you again,

Kylee xo



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 !!


18 comments:

Lisa said...

Please know that your blog does help me. My daughter, Cate is 6 years old, and your was the first blog I ever read. It brought me into a community of DS moms I would have never met virtually or otherwise if I hadn't found you first. I still read every post because it puts my hetic life into perspective. I can see what Lily is doing and remember Cate doing those things. It helps me see how far we've come together in this journey. Plus a Lily picture is a great pick me up during my morning blog check ins!

Elizabeth said...

Oh my goodness! Your little streaker! How stinkin' adorable!

Anywho...there it is. What amazing timing God has. You, through your blog, your writing, have become a channel for people who need hope and inspiration. It is a wonderful gift that you have and I am thankful that I found your blog, that I found your Perfect Lily!

Much love in the coming weeks and months as your family transitions.

Elizabeth in NC~

nicole said...

How amazing ~ praise the Lord! Keep being His instrument.

Jenny said...

Patti your blog has done so much good for so many people...This post is just one example of many, for all those you have touched.

Your blog doesn't need to fit into any specific blogging category, and it doesn't need to be a huge priority in your life...Just blog when your heart feels the need or desire to.

Your blog has always been about many different things...You write beautiful letters to your daughter, you write about some fears or emotions you need to talk through...You write how amazing Lily is and how much joy she brings to those who love her. You write to bring awareness to RR and orphans with Down syndrome...You have helped raise tremendous amounts of money and have actually been the means for some children to find their families...

You show the world how wonderful Down syndrome is just by giving us a peek into Lily's life. Your blog is an inspiration to so many. Please don't think of quitting because you think it needs to take a specific direction...Let your blog be what it has always been...About Everything. That's what we all love about it :)

my family said...

Ggod's timing is so perfect, now Miss Lily get some clothes on:)

thebauer4 said...

God's timing is always perfect.

Mandy

Marci said...

Your blog often brings me to tears - in a good way! I love the way you reach out to us to help these beautiful children get adopted. I love reading about Lily and the rest of your family. If you ever stop blogging, I'll be brought to tears - in a bad way!

Thanks for sharing your heart with us, Patti! And I think it is awesome how many lives you have touched! I don't know that you will ever know just how many that is!!

Melissa said...

Actually you have touched far more lives than you may ever realize. I told our ped rheumatologist about your blog the other day and she said she would send parents your way! Yay. It would be cool if they found you that way because then I too would feel like I'm helping someone indirectly.

Nina said...

Patti, God is using you in a very mighty way; your blog is a huge part of my day and without it I'd really feel the void. All of us with "special needs" children have a bond that is not understood by anyone else. We may all live throughout the world but the love and commitment to our children is bound together due to the gift of your blog. Just know that when you can make time to write and post photos that we consider it to be a tremendous blessing!!

Deanna said...

Wow, that's amazing!

Tam said...

Patti,

If you ever doubt whether you should blog or not, just remember Taylor. $12,000 in less than three days. If it wasn't for your blog, I would not have known about Taylor, and would not have been able to donate. In the state that I live in in Australia, there is no option for me to adopt any child internationally, and I certainly would not be able to adopt a special needs child. Our laws simply do not allow it. What I can do to make a difference is donate, and your blog is one of the places that I come to to know which children and families are most desperately in need. You are making a difference.

Mrs. K said...

Goodness gracious Miss Lily Anne have you no shame? :>) xoxoxoxox

Stephanie said...

Hey, I am from Arkansas! :)

Stephanie Lynch

A pathologically information hungry mother said...

Patti, please continue blogging, I have only followed your blog for less than a year, but I have given is as the go to point for 2 families who recently had babies born with DS that wasn't diagnosed before. You probably don't realize this, but your blog also helps families, like ours, where a child is born with another special need other than DS. Although, not a practicing Christian myself, I do need to read the thoughts that you have to share...

Gilda said...

How great is that, just by posting about Gabe. You help out another mom and her daughter too. God is so Good! and thanks for the laugh Ms. Lilly:)

The Harvin Family said...

Well if that isn't a reason to blog what is!!!
What a wonderfully inspiring story. So happy to see that precious Gabe is awake again. I can't even begin to understand the heartache that momma must have felt constantly waiting for those eyes to open. God Bless!

Cindy said...

What an inspiring story! Thank you for sharing this. It made my day!

kenda said...

Koralyn has Hypoplastic Left Heart Syndrome and you know we have talked and I have so appreciated your love and prayers and insight and I just find this amazing!! You are a dear sweet lady and have helped me and countless others. Thank you!