Thursday, January 17, 2013


Dear Readers,

I've had something on my heart for a week, and I've been trying to find the words to put it into a blogpost.

I've been contemplating ending Lily's blog lately. Not because I don't love connecting with people, but because I've wondered how much good it's doing. This blog was started as a way to process the emotions I felt during my pregnancy with Lily, and in the months following her diagnosis and birth. It was a roller coaster ride for sure, and writing has always been a good tool for me to "get through" things. I shared my blog with friends and family, so that I could let people know what we were going through ~ that way they could tune in if they wanted, but if it was too much info, or whatever, they could tune out :) Along the way Lily's story drew many new readers and friends from around the world...which was not my intention; but it was a wonderful feeling to know she was impacting others' lives.

Now here we are three years later, and I have to say I am not on a roller coaster anymore, as far as Down syndrome goes. (other areas, perhaps, but not Down syndrome ;))

So I've been wondering what the purpose of Lily's blog is, because as a busy mom, I really do want to use my time wisely, and there are only so many hours in a day, you know? 

Last week I received several emails, and a few requests to guest post on some blogs I admire...and I met a host of lovely "Lily followers" at our Bible conference...and I guess you could say things started to fall into place for me.

Because it hit me- where we are at right now on our journey with special needs is important too. 

It's important for people to see that a life lived with Down syndrome - or any other "unexpected" diagnosis - is good. Blogging and writing about those initial feelings of confusion or grief or what-have-you, has helped many mamas to see that what they're feeling is normal and doesn't diminish their love for their baby. It's valid.

But blogging about this side of things can be just as important too. Because as three years has come and gone, Down syndrome has taken a back seat in many ways, and that's okay. Sure, there are therapies and decisions about schooling, and potty training, and other challenges we haven't faced with other kids. But for the most part we have adjusted to this new normal with Lily, and I don't wake up with Down syndrome on my brain every day. In fact, most days I just plain forget about it.

So I wanted to share one of the emails I received, in hopes of inspiring YOU. Because each one of us has a sphere of influence. Nobody lives in a vacuum. And whether you realize it or not, your life is influencing someone, somewhere, for good or bad. 

My husband and I attended our fellowship's semi-annual Bible conference last week, and after a week of awesome preaching we both determined in our hearts that this year, more than ever, we were going to determine to influence others' lives for God. Tell more people about Jesus, pray for people more, love people more, show others how much we care, intentionally look for ways to be a Godly influence in this generation. Our days are numbered, you know ? If this were the last year of your life, how would you spend it ? That's how I want to live. I don't want to wrapped up in my own little world, I want to be an instrument in the hands of God, and I want to make a difference in people's lives. Not for "my glory", but for the glory of God.


Dear Patti,

I’ve been reading your blog for a few months now and have thought about writing many times…but simply enjoyed my read, allowed my life to be touched by your words and then would continue with my day.  Today however, my soul simply opened up and I felt – “now is the time to share.”

This morning I was watching Good Morning America (my pre-work ritual) and there was a story about Hillary Clinton returning to work.  They showed images of her staff welcoming her back and about the number of countries she visited while Secretary of State.  As I watched, I thought – what a remarkable life she must live (politics aside).  She’s only one person, yet she’s touched the lives of so many people in so many countries in so many ways.  I then wondered what it must feel like to be that important.  It was a fleeting thought and then I went back to my day.

On my lunch break, I read your latest entry and one line in particular stood out to me – “I am so humbled that God is using Lily’s blog to touch other’s lives – honored and blessed beyond belief, that God gave us the gift of Lily so that we could minister to others and meet so many beautiful souls along the way.”  I instantly drew a parallel between your life and my earlier reflection on what it must be like to serve as the Secretary of State.  I wondered if you truly knew the power of your words, reach and works.  I wondered if in the moment that you wrote this sentence, you could feel the gravity and truth of this simple statement.

I suspect that I am one of countless others who get a glimpse of how God is working through you to minister to others.  It is truly remarkable.  When our son received a pre-natal diagnosis of Down Syndrome and the fears of the unknown, the sadness over what I imagined this would mean, and the disconnect …the disappointment I felt in my relationship with God became overwhelming – I found your blog.  Perhaps it’s more accurate to say that God nudged me in the direction of your blog.

Since reading A Perfect Lily, I’ve found solace, comfort, answers, hope, laughter, advice and direction wrapped up in the words that you so beautifully lay to each page or in each image of your absolutely lovely family.  In my moments of sadness and fear, when I couldn’t find the words to have a conversation with God about how I was feeling, a post of yours would inspire a prayer – whether it was praying for your family as you transitioned to a new home or praying for the life of baby #11.  Before I’d know it, the silence between God and me was broken, and our relationship was on the road to healing.

Threaded in each message, you’ve paved the way for God to speak to me and for me to respond…whether it’s an alleviation of fears, a lesson about family, a reminder of just how blessed and fortunate we are – even in the face of all of life’s challenges, or to show me how to give and help others (of the little we have to give to Reese’s Rainbow, I realized a little something is better than a whole lot of nothing), you’ve ministered to me and changed my life as a result.  For this, I am thankful. 

So, I wrote all of this to simply share that – yes, your reach is far and wide (our little family is tucked away in Massachusetts).  And, I am happy to share that the outpouring of His love is felt by me through your words. And, simply or not so simply put, I’ve been incredibly blessed as a result.  Thank you Lily.  Thank you Patti.

*meet Erica's darling baby boy James...

I would love to fill this space with other stories and pictures of families with loved ones with Down syndrome. I'd love to hear your stories of how God is using the "unexpected" in your life to influence others. If you have a story to share, please email me and include some photos of your loved one with Down syndrome. In the upcoming weeks I'm looking forward to hearing and sharing your stories of influence.
Much love,
Patti oxox


cara said...

James is a doll!!!! Thank you for sharing him. I am a little biased to that name now too. :) What a blessing to see how your blog continues to minister to the world.

Oh Patti, I feel the same way as she does. I cannot tell you how much you have ministered to me through these last few years on this journey with Benji and finding you through another blog. It has been such a blessing. And God is clearly using you and Lily and this wonderful blog for His Glory. I know you have questioned quitting, etc. And I have no idea how you do it all! And I have thought you need rest from it for you and for your family. But I continually see God's Hand at work as you continue on this path. I know you will keep seeking Him through it all. I am SO, SO thankful for precious, precious Lily and you. Much love to you all. xoxo

JC said...

I think you have had a greater impact on people than you will ever know. And it would be a sad day for many of us if you decided to quit blogging :(

I started out my blog for the very same reasons...To write out what I was feeling, to have a place to vent my fears and frustrations I felt concerning Down syndrome and what it meant for Russell. And even though I don't need my blog for those reasons as often any more...I still think it has a place and a reason for existing.
I remember when Russell was first born thinking life would never be the same again, that "normal" was gone...I wondered if there would ever come a day where Ds was not first and foremost in my mind. Reading blogs written by Mom's who had older kids brought me that peace I needed. It gave me hope that one day I would be where they were at...Just blogging about boring everyday life.
And that's why I think sometimes continuing to blog even though we feel we don't have much to say, can be important. It can help newer Mom's find that hope they need. I imagine your blogs does this very thing for many new Moms stumbling across it.

And baby boy James is adorable...Love his shirt...Little guy, Big potential...Perfect!

Unknown said...

My face is covered with warm tears, still trickling down my face, from reading your last post. I don't have a child or know anyone personally in my close circle with Down Syndrome. I am a Mama to two wonderful boys and have been working on a strengthening my faith and relationship with God for some time now. I have never felt more at peace since I began my journey. It is so true how God uses the "unexpected" in our lives to influence others. Reading James' Mama's touching letter to you, has moved me beyond words. I am so grateful to have crossed paths with you and your lovely family in my world. So grateful.

Dylan'sMommy316 said...

Please don't stop blogging. I love reading your posts even though I don't always comment.

Mariska said...

Your blog was for me also one of the first ones I 'found' after we found out that the little girl we were expecting had Ds. After reading online about all kind of things that were 'scary' to me, like potential health issues and other negative stories, it was SO comforting for me to find your blog!

I still love reading about Lily, and I do think it's great for others to see how the Down syndrome part has become less an less of an 'issue' - that's exactly how I feel.

I understand that you're a busy mom, so I would totally understand if you decide to quit this blog (but I secretly hope you won't because I would sure miss keeping up with Lily!)

Mrs. K said...

Patti, as your mother I am ordering you not to stop this ministry/blog. You and Lily Anne have certainly touch hundreds of lives and broght at least half if not more to Our Saving Lord. Tell Sam if you stop blogging I will come to live with you. Now there is a threat/promise. ;>)

Amanda said...

I love Ms. K!!!!! Sending you an e-mail, soon!


Becca said...

Hehehe - your mother said it!! :-) You have truly touched the lives of so many. Both your Down syndrome advocacy and your advocacy of the orphans in EE that need someone to speak for them over here. Please keep writing, and if you find yourself not having anything to say from time to time, don't sweat it - your readers are all still here.

Leah said...

You know I would just cry from missing you on blogging land. I have loved watching Lily grow through your blogpost. Without your help I could have never gotten Celine to $29,000 all on my own! Love ya Patti so much & really hope we can meet someday

Ginny said...

Thank you for all you do Patti, for the orphans, for parents who might be scared of what the future holds and for everyone else who looks to your blog for inspiration and a smile.

crystalkupper said...

Well, like I said on your last blog, if it wasn't for you, I wouldn't know about RR, and Colt, and now I'm pretty involved with both! :-)

chicks3 said...

It seems to me that many blogs fade out when the children are around 3 and the family has accepted DS. I hope you continue to guide others through life with Lily as she goes off to school and joins Girl Scouts and lives her life. You would continue to inspire and help pave the way for many many families.

Ilisa Ailts said...

I've been going through the same thing and a lot of it is exactly what you say, time and 'life is normal here'.....but, if I were 2 years back I'd love all this! I just need to keep going for whomever may happen upon my blog and I hope you continue too. I don't get here often enough, but I like to catch up now and then :) She's adorable and so is the rest of your family! Plus, I am anxious for baby pictures!

Ashley said...

Would you mind if I shared our story about Laura and how Laura lef us to Kamdyn? I would love to share our journey with all of your readers <3

Ashley said...

led not lef! Silly me.

Sonya said...

I just cried when you posted this! How could you not know how much God has used your family to encourage ours? I guess we should tell you! I couldn't write after you posted because I usually sit at the computer with one of the little ones while they nap in my lap. One handed typing, you know!
Your stories touch my family in a special way that not all blogs about children with Ds do. Do I enjoy looking at some? Yes. Do they encourage my faith? Well, sometimes they do.
When I was pregnant with Glory we took a break from our church of 20+years after years of teasing that we shouldn't have anymore children. We were told that it limited our ministry to others and it was selfish. After our miscarriage it was just too painful for someone to say anything about this pregnancy. Then Glory was born with Ds and that was hard for us to adjust to "what does this look like?" We have six children (and yes, we'd like more!) and are very committed to Christ. So, I hope you can see that this can be lonely for us sometimes (God is blessing us with new friendships now) and we love how you share your joy with us.
Virtual friends, okay?
Blessings to you, Erica, blessed mother of James!