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!

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