Loving Sophia

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

2008-04-24T19:50:00.004-05:00

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.

i have a voice

2008-04-11T21:05:00.000-05:00

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!

2008-04-11T21:04:00.000-05:00

Road Map to Holland by Jennifer Graf Groneberg

2008-04-11T19:29:00.000-05:00

"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 http://jennifergrafgroneberg.wordpress.com/
I ordered her book at amazon.com 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.

Lamb's Farm Buddy Walk

2007-09-17T13:35:00.000-05:00

We attended the Lamb's Farm Buddy Walk yesterday. Lamb's Farm is a wonderful place for adults with developmental disabilities.http://www.lambsfarm.com/

They hosted the Buddy Walk which is a Down syndrome Awareness walk. They had a large tent set-up for different Down syndrome organizations to display info. We worked at the Gigi's Playhouse (www.gigisplayhouse.org) booth.

The 2 women working at the booths next to me were great. One was from NADS (www.nads.org). She was sharing stories about her son who is 20 with DS. He really wants his driver's license. He learned how to drive at 16 but hasn't taken the official test yet. I am so glad that that is at least 9 years off for Sophia. I have full plans to drive her everywhere she needs to go for th rest of her life. I am sure she won't have anything to say about that ;)

Another woman was from Ups for Downs. She was telling me about her daughter with DS, who is in 7th grade. As soon as she said 7th grade, I conjure up images in my head of Sophia in 7th grade. She's chasing boys, kissing boys. God help me. I snap back to reality. I tell the mom that Sophia sure talks about Drake and Josh a lot (Nickolodeon show)-that Drake is her boyfriend and she's going to California to see him. The mom smiles in acknowlegement and says that her daughter also likes Drake and Josh. I tell her half-jokingly that I was hoping that maybe Sophia won't be interested in boys-that somehow DS will take away all those hormones. She laughed and said, "Are you kidding?" and gave me an all-knowing smirk. I think she deicided to spare me the details of her 7th grade daughter and boys-kind of like nobody tells you about the pain of labor. Some things you just have to find out for yourself.

I also kind of have an unwritten rule in life. It's pretty simple-One Day At a Time! Who knows what the future will bring but I do have today to enjoy and I will savor every moment-even the wet marks on the t.v. left behind when Sophia kisses Drake.

September Seeds Reap October's Rewards

2007-09-17T13:10:00.001-05:00

September is always an exciting month-back to school, falling into a routine, the smell of fall in the crisp air. I look forward to September because I will have some "time for myself". I am not sure why I look forward to that because truth be told, I enjoy myself more when I am busy doing things for others. When September came along I quickly signed up for volunteer opportunities at school. I am also on the Board at Gigi's Playhouse, a Down syndrome Awareness Center. One of my favorite things about September is all of the preparion I do for October, which is Down Syndrome Awareness Month. If you want anything published about DS, one needs to send out press releases in Spetember. If you would like your child's school newspaper to print something about it, you need to submit in September. I am involved with Gigi's Playhouse Down syndrome Awareness calendar and we wrap it up and send it to the printer in... you guessed it...September. As many of you know, Sophia was a May bride in last year's calendar. You will have to buy one to see what she is for 2008! The theme again this year is "Believe". I also contact all of the local school and public libraries to make sure they display their books about Down syndrome in October. I also tell them where they can get free copies of books pertaining to DS-a local group called Ups for Downs makes them available for free! We have donated our favorites to Sophia's and Mira's schools.

There are lots of new beginnings in September, too. The girls both just started Hip Hop class. This is the FIRST dance class that allows both of their age groups so I am very excited they are together. I find myself worrying more about Mira as I watch the class. She doesn't like to let loose as much. The last time she took dance was when she was 3 and she ran off the stage at the recital. 6 years later, she was ready to try it again. Sophia, on the other hand, is the first to volunteer to show a dance step when the taecher asks. I have also glimpsed her practicing at home-doing the counts out loud like a professional! Sophia also starts CCD tomorrow. I work hard not to get upset with the Catholic Church that they can not acommodate special needs kids in their schools (at least here in the Chicago suburbs). If they did, Sophia would be in school with her sister and religion would be part of her daily schooling. Thankfully, Sophia talks about God and Jesus, says her nightly prayers, and definitely walks in Jesus' footsteps. I know she will be very excited to receive Communion. After Mira made her Communion, it got increasingly hard to prevent Sophia from throwing a fit at the altar when we all went up for Communion-especially if the priest didn't bless her. Depending on who the priest is, they will do a sign of the cross over a child who clearly is younger than 8. One time, Sophia actually laid on the floor because she was so angry that the priest didn;t even acknowledge her. Fortunately, now she walks with her arms crossed and hands on her shoulders-which seems to get the message across. She gets a blessing and sweetly smiles, triumphant.

I have a blog!

2007-09-10T13:51:00.000-05:00

Hello!

Okay...you may think I am internet savvy but the idea only recently ocuured to me that these daily rumblings in my head can actually be put on to paper. Well, virtual paper anyway! Blogs seemed like somthing for 20-somethings until I started coming across a ton of them. I really enjoy reading how Down syndrome has changed families the world over. Once I figure out how, I will put links to some of my favorite bloggers. Anyone, I don't necessarily think I have anything earth-shattering to say but I like the idea of an open dialogue and where it can lead. I have "met" many other moms online and their stories inspire me. At the very least, this will give you a little glimpse into our life-a life better than I could have ever imagined for myself. Who would have thought that a "little something extra" on Sophia's 21st chromosome would be one of our family's greatest blessings?

Jessica