Tuesday, December 30, 2008

What I'd Like to Say...

"How old is he? Can he walk yet?" People ask me this all the time. "He's 13 months old -- no he isn't walking yet..." Then I smile and walk away...
What I'd like to say is...
"Well, no, he isn't walking yet, but you should see what he CAN do. He can crawl to wherever he wants to go; he can climb up on furniture bracing himself on his knees; he can roll a ball; he can chase after the cat; he can pull the dog's tail; he can reach as high as his little arms will go; he can smile so big that his cheeks look like little rosy apples; he can pull your hair before you can turn away; he can give juicy, wet, open-mouthed kisses, he can throw himself back at the right place when we play bouncing, rhyming games on my lap, he can recognize many words and looks in the direction of all his family members, the cat, the dog, the trees, his juice or milk, his Binky; he can make just about anyone smile with his deep blue, marbled eyes and charming wide open grin; he can bang out some great notes on the piano and help his music therapist play the guitar; and he can melt hearts. These are just a few of things he can do. Thanks for asking and have a nice day."
That's what I'd like to say.

Milestones Met

This is an older post that I had on another blog. It was originally posted on August 23, 2008.

John Michael had his 9 month check up yesterday. When he was first born, I'd expected numerous medical problems and was constantly worrying about what could happen. Every time we went to the doctor, I expected some horrible diagnosis. But John Michael has been our little miracle baby ever since coming home from the NICU after 8 days. He was discharged on Thanksgiving! By the time he was discharged, his heart holes had closed completely not requiring any further tests or open heart surgery. He learned to nurse well after a few days at home of nursing, pumping and bottlefeeding. He gave up the bottle and still nurses well, something that I was told he may not be able to do. He's only had one upper respiratory infection worth of antibiotics after 3 weeks of coughing and congestion. He eats all kinds of foods -- including various tastes and textures. He passed his vision test with flying colors. His thyroid and anemia blood tests were negative. His barium enema was negative for Hirschsprung's Disease and his intestines and colon are working fine, if a little sluggish. He sits unsupported for a very long time and can support his weight on his arms leaning forward and then pushing back up to sitting position. He gets in the crawling position and then scootches backward until he hits something with his feet. He can roll and roll and roll. We found that out the hard way as he rolled his 25 pound roly-poly body off my bed. Luckily, he rolled down the comforter which was hanging over the edge onto the floor like a giant slide and didn't get hurt. He loves people and pulling hair -- OK, I'm stretching here. That's not exactly "good" but he's certainly quick with his reaching and grasping. He's starting to self-feed Cheerios and actually gets one in his mouth about every four tries.
So what's so interesting about all these milestones? That's just it. John Michael has Down syndrome and the medical books I've read over the past 9 months mostly tell me about all the things that can go wrong. We've been so fortunate that he's had no serious health concerns. Yes, there are some "differences" between what he's doing and what a typical 9 month old may be doing, but people with Down syndrome are more like us than they are different. They have 46 typical chromosomes like we have. The difference is that they have an extra chromosome that carries with it the traits that affect appearance, muscle tone and cognitive skills (this is my simplified version). But just like no two people diagnosed with Autism are alike, no two people with Down syndrome are alike. It's my job as John Michael's mother to be his #1 advocate and to help others see who he is on the inside and not focus on outward appearances or rely on their preconceived notions of what Down syndrome means. And please, let's not use the "r" word. It's in every medical book that discusses people with Down syndrome. Fortunately, his therapists don't like the word, either. They say "cognitive delay" which is much more appropriate and kind. If you meet John Michael some day, I know you'll fall in love with his smile and charming personality. And if you look deep into eyes, like I get to every time he nurses, you'll notice the little white stars in his clear blue eyes. The white speckles and streaks are benign marks called Brushfield Spots. They are just one of the things that make him unique. I call them his beauty marks for the eyes and not all, but many, kids with Down syndrome have them.
We continue to be amazed at this little guy. He's actually an easier baby to take care of than each of our other children were as babies. I guess we're learning to take things a little slower, have more fun along the way and not stress over milestones in books -- we just use them as goals to work toward. John Michael is leading the way and we're only here to guide him along his journey.

Dreams in Reality -- More Glimpses of Hope...

Did you know that 90% of prenatal diagnoses of Down syndrome end in termination? That number is even higher in some European countries. It really is true that people with Down syndrome are more like us than different. Learn more about what's possible for the future of people with Down syndrome by watching the new inspirational film, Dreams in Reality, produced by the Down Syndrome Information Alliance of Sacramento, California.

Whispers of Hope

Whispers of Hope, produced by the Down Syndrome Information Alliance of Sacramento, California, is a beautiful compilation of photos and stories about real families who have a child or grandchild with Down syndrome and their message of hope for a positive future. Click on the link to download this pdf file.

About Greta...

It's hard to write warm and fuzzy thoughts about my 3 1/2 year old when she keeps testing my patience! Is it her red hair? Her precociousness? Her quick wit and charm? Her birth order (#3 of 4)? Is it her strong will and stubbornness she has from my side of the family? Is it the DNA she inherited from her paternal grandfather's side of the family? It's probably a combination of all those things and a little of something else. That's just Greta. It's how she's wired. She has a smile and a spark in her eyes that make it hard for me to stay angry for too long. She gives the biggest, most hugest bear hugs I've ever felt -- more like a headlock. There's no escaping until she's ready to let you go. She has the energy of 3 preschoolers. She's a bed jumper, against my best wishes, and she loves to hang upside down on the monkey bars, which is another reason I call her one of my monkeys. She dances like there's no tomorrow. She sings as if she's a superstar. She loves to learn new things. She takes time to smell the flowers. She loves unconditionally. She gives her little brother, who has Down syndrome, more attention than I ever thought possible, with hugs, kisses and smiles to spare. And for all these things, I'm glad she's mine!

Saturday, August 16, 2008

It's that time of year -- corn dogs at the State Fair!

John Michael is 9 months old. He started sitting up, unsupported, at the beginning of August and can now stay sitting for longer periods of time. He can support his weight while leaning forward on his arms and then, with all his might, steady himself to sitting upright again. He can push his arms up while lying on his tummy, roll from front to back and back to front. The other day I found him under the coffee table. He'd rolled away from me in the middle of the living room before I knew it. When he's on his tummy, he tries really hard to crawl by pushing up his knees under his tummy. That only gets him going backwards, which tends to frustrate him the further back he goes. Last week he had his first routine eye exam. He passed that with flying colors -- no cataracts, no visual problems, maybe just slight astigmatism. The doctor said, "See you in a year." Yes!

Today I took the four kids to the California State Fair. My husband, Doug, flew to Las Vegas for the day to attend a research committee meeting. At 95 degrees here in Sacramento, it wasn't the most pleasant thing to do by myself, but I really wanted to surprise Greta, who's 3 years old, by taking her to see the Doodlebops live. It was definitely worth the trek. Nicolas and Anna took turns pushing Greta in one stroller, while I pushed John Michael in the other. I'm so glad we brought 2 strollers because it wasn't long after we arrived at the Fair that Greta exclaimed, "I can't walk anymore!"

John Michael hardly fussed at all when he and I were bonded together by sweat watching Greta dance wildly to the Doodlebops pseudo kid rock music. I'm always humbled by how little he complains and how much the rest of us, me included, whine about the littlest things. I read somewhere that we need to be careful not to take advantage of John Michael's good nature. Just because he doesn't complain, doesn't mean he isn't uncomfortable or deserving of more attention. I took his sweaty round body and bounced him along with the beat of Dee Dee, Rooney, and Moe. The higher I bounced him, the harder he giggled with joy. Anna said, "I'm bored." Nicolas danced along with Greta on his knees since at 11 and 5'5" he's not exactly a little kid anymore.

All in all it was a fun outing. I threatened to cut it short a few times when Greta started literally melting on me. The heat and lack of a nap were taking a toll on her little body. We managed a few more exhibits, touched a live alligator (I never realized how soft, moist and cold their skin would be) and take a monorail ride around the fairgrounds to see all the things I wouldn't be taking them to this year. We love going to the State Fair every year, but I've never gone without Doug. Tonight when Doug came home, he offered to take the kids back to the Fair for some Daddy fun. Hopefully their neon-colored hand stamps are still visible to get back in without paying again. I think John Michael and I will just enjoy a quiet evening together, maybe watch some Olympics events or take Mitzi for a walk. We'll see...

Monday, July 14, 2008

"Your Baby has Down Syndrome."

“It looks like your baby has Down syndrome,” my OB/Gyn announced shortly after the birth of our fourth child, John Michael. Down syndrome? Are you sure? Two weeks later, the diagnosis was confirmed by a genetic test. He had an extra squiggle at the 21st chromosome. Trisomy 21.

Eight months ago, we entered into a new world. The world of special needs -- therapists, teachers, and ALTA Regional Center. A world of amazingly caring people in the Infant Development Program who help you help your child reach his fullest potential. I am humbled by their generosity and kindness. Thank you.

Friday, July 11, 2008

What's my Purpose?

A friend of mine asked me recently if I knew my purpose in life -- if I knew what I'm here for. I guess I've been called to be many things -- a wife, a mother, a singer, a writer, a friend, an advocate for my baby with Down syndrome.

Last year I turned 40. My plan was to be "Fit at Forty." That was my motto. I went to Weight Watchers to lose those stubborn 10 pounds of baby fat and started working out at the club. Soon after, I became pregnant with my fourth child. My motto was catchy, but I had to put it aside since I'd be 8 months pregnant at my 40th birthday. Oh, well, there's always next year, I thought. John Michael was born on November 14th. He was placed on my chest and quickly turned purple. He was whisked away to the NICU and we received the startling news that, "It looks like John Michael has Down syndrome." I'd avoided prenatal testing. I always said that if they detected any abnormalities, I'd worry too much. Abortion was out of the question and I assumed this baby would be a typical baby just like my first three children.

I think it's hard to know what you're called to do. I know I was called to married life, to motherhood. When I converted to the Catholic faith, my name, Monica, took on a whole new meaning. I learned that St. Monica was the mother to St. Augustine -- a scoundrel of a son whom she prayed for for many years for his conversion. Her perseverance in prayer payed off and he's considered one of the greatest saints and a doctor of the Church. She is fittingly called the patron saint of mothers.

I was also born on the Feast of St. Francis. Coincidence? Probably not. I love spending time in my garden, watching flowers grow and bloom. I love watching birds and squirrels tease my cat and dog in our backyard. I love being in nature, the smell of pine trees, damp woods, or the spray of ocean mist on my face.

This year for my 41st birthday, I will be celebrating something new. The Buddy Walk for Down syndrome awareness is taking place in my city on the same day as my birthday. Coincidence? I don't think so.

I think we can know to some degree what we're called to do, but sometimes God just slowly unfolds our lives like rose buds, one petal at a time. My flower is only half way open. I can look back at my life and recognize my conversion to Catholicism as the fertile soil that would keep me steady, nourish me. My first Holy Communion at Easter Vigil 2002 gave me the water necessary to keep my soil damp and my soul thriving. The Eucharist nourishes and sustains me like fertilizer. The Holy Spirit blew His breath into me at my Confirmation, providing me the air I need to survive. Finally, there's the pruning which is necessary to renew my soul and help me to continue growing healthy and strong.

I don't fully know where I'm headed or what I'm supposed to be doing, but I trust that God has my best interests in mind. I have a strong nudging from the Holy Spirit that I am to be an advocate for John Michael and other families affected by Down syndrome. I'm ready for the journey.

Thursday, July 10, 2008


This is the beginning of a new journey for me... blogging. I've been encouraged by a staff newspaper writer, Denise, to start writing... that I have a story to tell. I'm game. Stay tuned as I muse about being a Catholic convert, a wife, a mom to 4 "monkeys" (the 4th child with Down syndrome) and other non-essentials. Here we go.