Friday, August 16, 2013

moving forward

Lately I've been thinking a lot about Down syndrome and the role it plays in our family.







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.

33 comments:

CMSavage6 said...

I, for one, am just happy when you post. I follow both blogs and I'm just excited to see anything from you. Keep it up!

amy jupin said...

hi you.
just glad you are still here.
and i'll take any cute pics you got!
p.s. lovin lily's outfit!!

Kathy McElhaney said...

I love your blog and all that you post about Ds, Reese's Rainbow, Lily, and the rest of your family.

I am the youngest of 4, the brother closest to me was born with hemophilia. Many of my childhood memories include hospital visits (2 very extended stays on his part) but there were many "normal" times with the four of us swimming, riding bikes, loving, fighting, and living!

As you posted on Wednesday, Lily is a whole person. Please post about your whole family - her siblings contribute to who she is.

And Hayden is adorable, so pictures of him are always welcome ;)

M. E. Stephens said...

That makes perfect sense. After all, as Lily grows up her life will be more and more about her family. That's normal for any kid as they mature. But, with Lily's special place in your family, I'm sure that as she matures it will also be a unique place, and Lord willing one of continued blessing to all of you. When she's old enough to understand, I'm sure you'll find this is exactly what she would want you to do. :-)

lovemy3 said...

You worried me...I love my Lily fix! Your blog was one of the many that helped me through those first few emotional weeks and months. I needed to see a child that was just a little older than Hailey. To show me that what we were struggling with would get better! Thank you for continuing your blog...mine turned into more of what our family is doing and not just Hailey, too. Would any of your older children be willing to "guest blog" about Lily and how their life changed (or didn't change) because of her having Down syndrome? Just a thought. Thank you for sharing your family with us :-)

babypelly said...

I always wonder what your other kids are like but am too lazy to click the link to get to your other blog so I'm glad you'll consolidate!!

Elizabeth Clark said...

Excited to see the direction that this blog was taking. The whole time I was reading this post, I was thinking, "I hope Patty won't stop blogging!!" I'm excited to hear more about the rest of your amazing family as well.

my family said...

i love hearing about everyone

Sonya said...

I'm a big fan of your family so I would be so happy to hear more. I never added your family link so this is the one that is etched into our favorites list! As a mom with six little ones not as far down the road as you are, I'd love to peek into what that looks like for your family. We love to see your faith in action and what a large family looks like, and what drew us in was how Ds has affected you. Thanks for blessing us with this glimpse. I wish we could offer something in return!

nicole said...

Sounds like a good plan to me!

nicole said...

Sounds like a good plan to me!

Amy said...

I'm so very glad you're continuing to blog (you had me all antsy for a moment) and that we get to hear about each of you. I flat adore your big family :).

MotherT said...

I haven't been reading either of your blogs very long, but I love all of the glimpses into your family's lives. I love the pictures/videos/descriptions of everyone interacting and I adore the way Lily just gets into the family everyway she can. (Including helping with Hayden!) I'm glad you will be making this more about the whole family, it should increase the fun monumentally!

Colleen said...
This comment has been removed by a blog administrator.
katrynka said...

I read both blogs, so I'm happy to have you keep posting whatever you like!

cathy said...

& I am just as honored to be on this journey with you, as well!

xoxo
cathy

teal915 said...

I think it's a perfect plan. I never really get why people start separate blogs, so it makes perfect sense to me. I'd never be able to manage 2.

Beckey said...

It was so nice to meet you today. Thank you for being so gracious as I interrupted your trip to Costco. :) It was fun to get to see your family to! Here is the link to our blog that you asked for. http://onemoreforthemasons.blogspot.com

I have prayed for your family through all the changes you've had recently and it was nice to meet you in person.

Race Bannon said...

One thing we know for sure, Lily won't mind, people with Downs are happy all the time!

Tara said...

I hear ya. Its hard to keep blogging about Down syndrome once it becomes just a small part of life! Its a great place to be, though. :)

Jenny said...

I think joining the two blogs is an excellent idea!! I for one am really excited to get to know more about the other kids in the family :)

eliz said...

Wonderful! Exciting news!
As for Ds and our family- we don't notice it ever. Seriously- people point it out to us. They are kind, sweet and generous so we oblige to answer all their questions. Ds is normal! LOL! Our kids, our Grandkids, everyone in our family see M.A. as a person first and they never ever talk about what she can't do- they always say she can do everything! She is a second mamma here! :o)
I too write on my blog with a Ds title to support and educate.
Just in case God uses us!
(((HUGS)))

Cindy said...

I believe this is a natural transition for any family who has a child with special needs. Once the fear of the unknown subsides, everything becomes just... casual. Natural. I look forward to reading about your entire family!

Jennifer said...

Lily is adorable in that hat. And I could never boycott any of your cute kids. As others have said, I'm glad you are going to keep blogging so I can keep stalking your wonderful family. :)

cara said...

I cannot imagine how you would keep up with two blogs, or even one for that matter!!! I think this is a great idea!!! And I LOVE your whole family. I am excited to be a part of this journey with you. xoxo

Mariah said...

Yes...a thousand times yes. What was the question? LOL! Oh yeah...yes, I will stay with you for the journey! I love your posts and love that I can get to know you a little bit through those posts and a little bit via instagram since I don't think I will be able to get to know you any other way, this side of eternity! Love you, Patti!

Faith Kopp said...

I LOVE seeing all my grandchildren and the occasional pictures of my Greatgrandson. The pictures and captions make me feel closer. Happy to see Ds is not the highlight but has become just "another ordinary day" in the lives at the Rice Ranch. See you soon. Love, Mom/Grammi/Greatgrammi

Merideth said...

Can't wait to watch you expand your blog and hear more about the rest of your amazing family! Because I love them just as much as I love Lily! And that's a lot! :-)

xoxo
Merideth

Nicole said...

very good idea... I come for all the pictures of your sweet kids and gorgeous baby ! Just blog as you feel ! Lily is part of a large family and that makes her what she is !

lindley said...

Don't know if you will see this with all of the comments already, but I think this is a great idea and is really encouraging to me! I blog, we've corresponded once before, about my family and all the goings on of having 4 children--one with DS too. Sometimes, I feel like people only care about the posts that include Baby Way---which I absolutely love--all the support we receive about him--but I also have 3 little boys with lots of fun these to share too! We are just one big family--not as big as yours :) but I completely understand! I'm excited to see all that you will be sharing--and gleaning from your Mommy experience!!! Thank you!!!

The Graham Family said...

Patti your blog(s) rock! I'm so excited for this. :) You have a beautiful family and amazing perspective. I can't to see photos and hear more about your other kiddos. :) Love love love!

nicolehinesstarkey.com said...

Completely understand what you are saying (although on a much smaller scale both family and follwers wise :) I changed over mine to be more family as well- it was what I needed to do to maintain mental and emotional balance. xoxo Nicole

Kari Hicks said...

Glad you are staying!!! I can't tell you how much reading your blog has helped me :) And big big congrats on Baby K.