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.
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.