Sunday, February 27, 2011

Lovin the 50's right now (degrees that is)

Sophia LOVES to swing!
The 3 girls hanging out

 Jayden is practicing her throwing skills

 are you ready for this daddy?

"I've got it!"

...and she caught it!

hey batter, batter, batter!

dad stepping in to assist

and this is how it's done :)

Eye on the ball


Sophia watching from her lookout


One, Two...



Getting ready for our bike ride.

Saturday, February 26, 2011

Inspiring things I've read about Down syndrome

I'm still reading my book, Gifts, that was given to me at Christmas, and some of the things I've read have really made a connection with me or just made me think, "wow, I never thought of it that way."  So I thought I would start sharing some of the inspiring things that I've read about Down syndrome from other moms, just like me.

- "....never worry about her.  She's from God and He'll take care of her."-Amy

- "The lows are lower, but the highs are much, much higher."-Jennifer

- "Your  life will have flashes of color you never knew possible."-Mary

- "Life with an extra chromosome is a gift.  A good gift."-Kathryn

- "She is who she is, as she was intended to be."-Rebecca

- "Why me? Why not me?"-Cynthia

- "If I worry about tomorrow, I'm going to miss today; I would miss this very  

- "Our life is better than good.  Sure, we have our tough days, but they have
    nothing to do with Down syndrome.  How can this message be understood
    by those who don't have a person with Down syndrome in their lives?  I
    don't know.  I was one of 'them' and I still don't know.  But I will continue
    trying to build that understanding."-Janine

Thursday, February 24, 2011

Mom, HSE students push to end the 'R' word

I love reading stories or articles about people, especially young people, tyring to make a change for the better.  As parents, or older adults, we can be set in our ways and only really know what we had been taught years before.  But in reality, times are ever changing and things that were once acceptable aren't acceptable anymore.  And it's awesome to see young people standing up for what is right, especially when the people they are standing up for may not be able to stand up for themselves.  Check out the article here, that was posted in The Indianapolis Star about ending the 'R' word. 

Stepping outside the box

It's so easy to stay in a place where you are comfortable and feel safe.  Why would you ever want to do anything that takes you out of that comfort zone and throws you into a place or a situation where you are scared, nervous or totally uncomfortable?  I have always lived my life with my "security blanket" right in my hands.  I'm definitely not one to step outside the box.  If something is scary or uncomfortable, I try to avoid it at all costs.  I would much rather pretend that I didn't see something than confront my fears.  But the truth is, this world is full of things that make us uncomfortable and most of the time our feelings of being uncomfortable or scared are based on the lack of knowledge we have about life and people.  I read this post that another man wrote and I imagined myself, not to long ago, thinking the same things.

Communication is something that I worry about with Sophia.  As her mother, I know what she wants.  I know what makes her happy, sad, and mad.  I know how to comfort her and make her feel better.  I know what all her babbles mean and we have our own communication between the two of us right now, but what worries me is that I'm not always going to be there with her to know what she wants or needs all the time.  I want her to be able to express those needs, and be understood, by everyone.  It scares me to think that not only will Sophia not be accepted by certian people because of the fact that she simply has Down syndrome, but to not be accepted, or even recognized, because she may not be able communicate the same way most of us can, hangs a little heavy on my heart.  I don't want people to be scared or uncomfortable around my daughter and therefore dismiss her or pretend like she isn't even there.     

Wednesday, February 23, 2011


Today Jayden's preschool class took a field trip to Ostan's Tumbling and Trampoline Academy and we had a blast!  The kids got to spend an hour jumping, climbing, balancing and rolling, and it was FUN! 

Jayden and her teacher, Ms. Angie

 Jayden on the bars

 Side ways on the balance beam, and showing off that pretty smile :)

 Tumbling down the wedge and Sophia getting in on some of that action too!

 Playing with the parachute

 She was so overcome with excitement and wanted to go every where!  I had to cage her :)

 Cracking up over the bubbles

Oh yeah, this girl is standing and has been pulling up and standing all on her own, ALL THE TIME!

Rock wall

Soph and Nana


and more Bouncing!

more balance beam

preschoolers :)

jumping on the trampoline

Thursday, February 17, 2011

Outside Play, FINALLY!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 she had to stop to make #2

just making sure I saw her :)

 Playing, and eating, chaulk

 this leaf looked pretty tasty too

 biker chick

 checking to see how fast Sophia is catching up to her...

 ...and she's right on her tail!

 swing batter, batter, batter

 nothing like a little hopscotch

 and of course Sophia and I had to get in on some of that

 and Woody did too

 then she was outta here!

 Jayden leaving us in her dust

relaxing, why mom does all the work! Typical :)


Catching up on some reading

Wednesday, February 16, 2011

My Gift

I've been reading a book I got from Christmas, thank you Casey :), it's called Gifts and it is a book compiled of stories written by mothers reflecting on how children with Down syndrome enrich thier lives.

sophia at Riley hospital in the NICU

"Gifts is honest and life affirming, a chorus of mothers proclaiming what every obstetrician and gynecologist should know-that life is a gift and an extra chromosome is not the end of the world." -Beverly Beckham, columnist, The Boston Globe

Sophia and Jayden, one of the first few weeks we were home, as a family!

"This fine book helps dispel the fear and misinformation about Down syndrome that many parents and prospective parents face.  As these deft essays convey, the world would be a sweeter place with more Down syndrome citizens, not fewer." -George  F. Will

"Through Gifts we hear the powerful voices of mothers who said 'yes' when others might have been saying 'no.'  These mothers take us on their journey filled with wonder, courage, and the belief that children with Down syndrome can and will succeed." -Brian G. Skotko, M.D., M.P.P.,  Children's Hospital Boston and Boston Medical Center

After reading these stories that other mothers wrote about different experiences in their life since their special gift came into their world, it made me want to write down a piece of our story.  So here it is:

Our first Buddy Walk

I still remember hearing for the first time that the doctors suspected  that Sophia had Down syndrome.  I was still in the delivery room recovering.  I had already seen my sweet baby girl and held her in my arms, but she was in the nursery now and I was waiting for the moment that I would get to see her again.  I was feeling so many emotions at that moment; happiness, joy, relief, and a heart wrenching fear.  I wasn't expecting to have a baby that day, in fact I wasn't expecting to have a baby for about 45 more days.  I was trying to convince myself that everything was okay, like I had been doing all day, but deep down I just felt like something wasn't okay, but I had no idea what could have been wrong.  Then my OBGYN came in, along with the neonatologist and the delivery nurse and I felt a wave of panic run over me, they literally looked like my baby had died and they were there to deliver the horrible news.  Instead, they said that they suspected that Sophia had Down syndrome, but wouldn't know for sure until a blood test was done, but they saw markers that indicated Down syndrome.  I waited for them to tell me that she was dead, that I would never see my baby again, that something horrible had happened to my baby, but all they said was they thought she had Down syndrome.  I was confused and a little scared.  What did this mean?  I had no idea what Down syndrome was.  All I could see was the face of a person with Down syndrome, but other than that I had no clue what they were telling me about my baby.  But I did know that she was alive and she was my baby and I loved her with all my heart.  At that moment I would have died for her.  She was a part of me.  She was small and sweet and absolutely perfect.

after open heart surgery in December of 2009

I sat there taking in what little information they told me and I didn't know what I was supposed to feel for sure.  The whole day had been totally unexpected, definitely not on my list of things to do that Saturday.  I remember crying, but not really sure why I was crying.  Again, I had no idea what was really happening or what it all would mean for our family.  The next day we were told about one of Sophia's medical problems, her blockage from her stomach to her intestines, and that she would be transported to Riley Hospital in Indianapolis within a few hours.  We immediately kicked it into high gear and began one of the most incredible journeys that we will ever make.

The next month was full of hospital stays, highways and any place and every place except our own home.  We learned so many medical terms and procedures and were thrown into a whole other world that you only hear about from other people.  We finally came home, as a family, with more information and a lot of extra baggage.  We had entered into another life, but as a family, together.  We were determined to make this new life work, for us, and we certainly have.  Things were pretty rough for the first 6-8 months.  It was an adjustment period for all of us.  We went through one more unexpected hospital stay and two more expected stays, also know as surgeries.  We made it in and out of each stay and it's been smooth sailing from there.  Of course we still have some obstacles to overcome, but who doesn't when raising children?  Our obstacles may not be considered "normal," but to us, they are.

I never could have imagined being a parent to a child with special needs, but I have to say that Sophia has given my life a whole new meaning.  I look at her and see the sweetest, purest, most innocent face I've ever seen, which may have a little to do with the fact that she's still a baby, but I'm going to keep telling myself she will always stay that way :)  I see how hard she works to accomplish things and how much pride she takes in all of her gains.  She is truly amazing and one of the two most precious gifts in my life.  I love watching her and Jayden together.  They are a typical sister,sister duo.  Sophia ADORES Jayden and Jayden acts like Sophia is the biggest pain in her behind :)  They hug each other and hit each other.  They laugh together and yell at one another.  But the look I see in each of their eyes is pure love.  Jayden would do anything for Sophia and Sophia will love Jayden unconditionally for the rest of her life.  I never could have imagined being a parent to a child with special needs, and now I couldn't imagine my life without my Sophia, special needs and all!
Sophia's first birthday!
Our second annual Buddy Walk!
Sophia Grace Russell, one of our little pieces of heaven!