Thursday, April 24, 2008

"Every good and perfect gift is from above" James 1:17

Sophia made her Communion on Saturday. What a glorious occasion for our family to witness. Ever since her older sister made her Communion 2 years ago, Sophia could not understand why she couldn't receive Jesus like the rest of us. This was very challenging to explain so we told her she would make her Communion soon! Well, 2 years was along time to wait but Sophia only threw herself onto the floor in protest once at the foot of the priest. For the most part, she would gladly file up with her arms crossed against her chest and bow for a blessing. She would turn to me and say "not yet?". So, you can imagine the days leading up to Communion when I was able to finally say, "Only 3 more days, only 2 more days". Her glee and excitement spilled over and I have to say I felt joyous on Communion day. I thought I would cry like a baby (I left that to the rest of the relatives) but I couldn't help but smile broadly. The best part is I think she "gets it", as much as any other 2nd grader gets it. I still have that tiny bit of resentment that she should have made her Communion as a student at the Catholic school my other daughter attends (no special ed offered at the Catholic school). Instead, she made it along with her CCD class. I did love her class and her teachers were amazing. She also knew quite a few girls in the class which made it feel more special. She looked like an absolute angel. I did wind up crying the next day (Sunday) when our priest invited any First Communicants present at that mass to come up to the altar. There were about 6 altogether and he reached out and took Sophia's hand and led her to the top step next to him. The sun was streaming through the windows behind the altar making it glow, the priest's robes sparkled gold, and Sophia all in white looked like an angel. It was really moving and I was proud to see her up there, hopefully giving many parishioners something to smile and think about.

Friday, April 11, 2008

i have a voice

I was at the unveiling of the above video at the Gigi's Playhouse Spread the Love Gala. This video along with some portraits will be part of a traveling gallery. This is an amazing collaboration between Gigi's Playhouse and Thomas Balsamo, who created the book Souls many years ago. Souls depicts children with autism. "i have a voice" depicts children with Down syndrome. Beautiful!

Road Map to Holland by Jennifer Graf Groneberg

"He's the child that I wanted, that I did not know I wanted."

-from Road Map to Holland

I have been lurking on many DS blogs for awhile now. I started my own back in September and then fell off the face of the Earth! However, I have been inspired to start posting again because of Jennifer Graf Groneberg's new book Road Map to Holland. I knew Jennifer was writing it because I had been a frequent visitor to her blog
I ordered her book at last week and just finished reading it. First, I want to thank Jennifer for writing it. My daughter Sophia is almost 8 and those early years seem like a lifetime ago. As I read about her delivery of Avery and Bennett and the ensuing first few months , I was catapulted back in time to Sophia's early years. This time, however, I was able to enjoy and savor the memories. That's the great thing about memories, all of the negativity and unease kind of settles to the bottom like sediment and all the best parts rise to the surface. I also want to congratulate her on an amazing book. I am impressed that she had the wherewithal to journal or somehow record the first 2 years of their life. This is a true testament to the fact that her story needed to be told.
I have to make mention of the cover. To say a picture speaks a thousand words...........the sheer joy, the giving and receiving of love, the wordless exchange of how much Jennifer and Avery rely on each other. I smiled when I first saw it because I know that unidentifiable emotion on Jennifer's face. I have lived it and felt it. It is joy, love, bliss, warmth, pride, tears, pain, disappointment, accomplishment, worry, anxiety, disbelief, awe-all rolled into one perfect moment in time. I LOVE THOSE MOMENTS!

Road Map to Holland chronicles the first 2 years after the birth of Jennifer's fraternal twin sons Avery and Bennett, along with her other son Carter and her husband Tom. Unbeknownst to Jennifer and Tom, Avery is born with Down syndrome. She truly gives the reader insight into what many couples go through when they are first told about the diagnosis. Her descriptions are so vivid and accurate, I could actually smell the NICU where my daughter spent 5 days and remembered one of the nurses (also Jennifer!) who told me I had an "angel" long before the neonatologist mentioned anything to me about DS. I have to say I felt like I was right along side Jennifer-cooking, at therapy, napping, grocery shopping, learning, hoping, realizing, growing. Just doing the "normal" things. And I guess that is the whole point-we lead very ordinary lives. Make that EXTRAordinary. Pick up the book if you're a mom, have a mom, or know a mom. If you are a mom expecting a baby with Down syndrome, throw away all those black and white statistics the doctor gave you and instead read a true account of the realities of being touched by Down syndrome. And to Jennifer, if I told you the best is yet to come, would you believe me? My cup runneth over. I continue to be amazed and inspired by both of my daughters. And while I don't "see" Down syndrome anymore, I can't help but feel it is my family's greatest gift.