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!