And I've also been thinking about my blogs, Notes From Home, and A Perfect Lily.
As many of you already know, this blog was started as a journal to my unborn baby, when I had a level II ultrasound and some markers for Ds showed up. I wanted a way to keep our relatives and friends updated on our baby without making lots of emotional phone calls throughout my pregnancy. I have always kept journals during my pregnancies, so it was natural for me to do the same with Lily...I just did it online with her rather than on paper. Those months of journaling were so helpful to me - I've always been able to process things more easily through writing.
When Lily was born and we found out that she did in fact have Down syndrome, this blog was even more beneficial to me personally. I needed a place to sort through my feelings, and it helped me connect with other Ds mamas. My blog about Lily, along with the grace of God, is what got me through those tumultuous months following her diagnosis.
About ten months after Lily's birth I discovered Reece's Rainbow, an organization dedicated to raising grant funds for children with Down syndrome in other nations who are left in orphanages. Connecting with families who not only accepted Down syndrome, but embraced it - to the extent that they sought out children with Ds to adopt - was a pivotal point for me in dealing with our own child's diagnosis. It helped me to recognize more fully the gift we'd been given in Lily. These abandoned children, and the heroic families who rescued them, tugged at my heart in such a profound way...I knew I had to do something to help them.
Through Lily's blog, multiplied thousands of dollars were raised to aid in the rescue of orphans with Down syndrome...to the tune of over $100,000. Tomorrow I'm going to have the honor of meeting one of the first children I advocated for, and I can't wait to share pictures with you about that experience. I know already that it's going to go down as one of the highlights of my life, and I am so grateful that God gave me my daughter and led me to this moment.
As Lily has grown older, Down syndrome seems to have taken a back seat to events in our family, most especially the birth of this little one in May...
It's not that we don't ever think about what it means to have a child with special needs, but as she is developing and learning and growing, things have sort of evened out as far as emotions and issues regarding her extra chromosome. I don't struggle much with what Down syndrome means to her anymore. Sure there are issues that come up - and I have a feeling those issues might increase as she enters the school age years. And I know I have not experienced everything the special needs journey has in store for me...but right now Lily is just a typical little girl who just has some extra challenges as far as learning goes.
I know that many of my fellow Ds mamas have faced health issues, sometimes life threatening health issues, because of that "magical" extra little chromosome. Thus far, the most we've experienced with Lily was an outpatient trip to the hospital for ear tubes. Lily never had any heart issues (other than a prenatal scare about a defect that either resolved itself or was healed by God) and other than spending her first week of life in the NICU, she has been extremely healthy. In fact, she has been healthier than all of my children to date...I think I can count on one hand the times she's had a fever or an illness requiring a doctor visit.
So here is my quandary.
I want to keep Lily's blog going, because I receive emails on a regular basis from people who love her blog and have been helped by it. Not a week goes by that I don't connect with a new mom or even more experienced mom who tells me she enjoyed reading a certain post about Down syndrome, or was encouraged by something we went through.
I also have friends and strangers tell me they sent a link to Lily's blog to an expectant mama or friend - so I love that we can be a resource for those people.
I know too that there will be things I want to blog about as Lily gets older, and I really love having a place to sort through my feelings about issues related to Down syndrome.
I'm sure there will be other Down Syndrome topics in the media I'd like to address, and there are some wonderful causes and issues I'd like to help fundraise for (including but not limited to Reece's Rainbow.)
But I also have a family...a large family ! ... and so much of who Lily is, is wrapped up in who they are. Who we are. It's hard now for me to separate Lily's story from ours, because she is such an integral part of our family, and as I said above- Down syndrome has taken a back seat to things in our day to day lives.
I do have a family blog, but honestly it's hard to maintain two blogs (okay, sometimes it's hard to maintain ONE blog !) and honestly I don't have the readership there that I do here. (Sorry, little family bloggy- you're just not as popular;) )
So what I would like to do is continue updating Lily's blog - without hesitating to include our family's photos and stories - and address the Ds issues as they come up.
Meaning, this blog will look a little bit more like a family blog than a blog specifically related to special needs. I probably will lean more towards addressing issues regarding Ds because I know it is helpful, and also because I'm still an English high school student at heart - I like to keep my supporting paragraphs lined up with my topic sentence ...which in this case is A Perfect Lily :)
I guess what I'm trying to say is - I hope you'll stay with me for the journey. I hope that if you come here expecting to see pictures of Lily and topics related to Ds, and instead you read a post about Hayden or Caleb or Abigail or any of our eleven children, with some adorable photos thrown in...you won't boycott.
I promise that if you keep coming back you'll read something about therapy or speech or orphans or new research about chromosomes or something that pertains to Down syndrome. That won't change.
What will change is the that my blog will be a little more reflective of what Down syndrome means to us as a family...it plays a part, but a small part of who we are. It doesn't dominate our lives, but it opens us up to a wonderful community of people, who I am so grateful to know.
I'm so honored to be on this journey with you, and so grateful for the gift of my little girl who brought me here...
...a perfect Lily.