John Michael at 15 months...

At 15 months old, John Michael is growing up so fast in so many ways. He loves things that move, like this cute car he borrowed from his cousin. He loves to push Lego cars and trucks around the house and crawl after them. He loves to chase the cat when she taunts him with her tail. He likes to stand when I pull him up, and is working on trying to stand on his own. He loves to crawl and climb up to his knees at each chair and sofa and coffee table within reach and put toys on them. He definitely has the concept of "in" and "on". We worked with him for a while on putting things "in" and now he can do it without any difficulty. He's starting to stack 2 blocks and if I hold them still, he can sometimes stack a couple more. He still enjoys knocking towers down, especially the ones Greta so lovingly builds for him out of Duplo Legos. He plays a mean kazoo and loves to hear the sounds he makes. I bought one for him and Greta at the music store for 95 cents apiece. Best $2 I've spent in a long time! He loves to play the drums and xylophone and is very good at banging with one stick. When he has two, he usually puts the left stick down and bangs with his whole soul. He loves to shake musical egg shakers (also from the music store) or anything that makes a sound when he shakes it, as well as banging things together. He loves remote controls and telephones and usually mimics me on the telephone by putting it up to his ear. So cute. He is trying to say, "Mama" but his "B" sounds usually get in the way of "M". That's OK. I'm thrilled he's so close. There was a time when I would think he'd never say "Mama." He usually waves 'hi' and 'bye' and makes a "T" sound for tree. He says a short "a" for Anna and can say "Dada." He gives the best impromptu soft, wet kisses and will gladly give anyone a "high five." This little guy is so joyful and gives so much, it's hard not to fall head over heels in love with him.

Goodbye, Flu! or "Not so funny Valentine!"

Last week was quite a week for our family. It started out as the perfect Valentine's Day. My husband, Doug, gave me a dozen roses, a beautiful card and a heart-shaped box of dark See's chocolates (yes, very traditional, but lovely nonetheless!) He made a huge batch of homemade pancakes with blueberries and bananas in some and chocolate chips in the others. The kids were in heaven! We enjoyed our day together and looked forward to a much needed date night, sans children.

Late that afternoon, Doug's mom came over to watch the kids. We headed downtown to see a play written by Canadian Norm Foster, called Mending Fences, making its U.S. debut at one of our local playhouses. It was a 5pm show. The play was excellent -- about a strained father/son relationship that needed, well, mending. After the play, we enjoyed some nice Rodney Strong Cabernet and California cuisine at one of our favorite bistros. Feeling very satisfied, we then headed to an art gallery reception, where we chatted with a plein air artist I'd invited to our school a few years ago. It was the perfect Valentine's Day date.

By the time we got back, around 10pm, Doug's mom told us we'd missed quite the "show" at home. Nicolas had had a violent attack of the stomach flu all evening. Thanks to Doug's mom being an ER tech and being around sick people all the time, it didn't even phase her. Two days later, Anna followed suit. We weren't so lucky with her. We were up all night cleaning sheets, emptying buckets, picking chunks from the carpet, stripping the bed and washing the comforter. Two nights later, within a few hours of each other, Greta and I were on opposite ends of the house, emptying ourselves until we had nothing left to give. I was so weak the next day that I couldn't carry John Michael. Doug stayed home for much of the day to help me. We thought Doug and John Michael were safe, but by that night, Doug was aching, too. Out of the whole family, John Michael was the only one who had a flu shot in the fall. His single episode with flu was also the mildest. I'm guessing the flu shot really worked...

Today was our best day since our sick-filled week. The sheets and comforters are all washed, the towels are hung and the beds are cozy again. John Michael was himself again, being cute and cuddly as usual. He's teething very badly, which causes him distress at night, but other than that, he's my little cutie pie again. So glad that's behind us! I'm thinking this year, we may consider flu shots!

Wordless Wednesday

"Don't look at me, I didn't do it!"

(Click on the photo to see his eyes up close. The white lightning streaks in his eyes are Brushfield Spots. They're mesmerizing!)

Moooovie Monday

You've got to check out John Michael's squishy face when he tries to say "Mooooo." It's too cute! As he was watching this little video clip, he did all the motions again because he heard my voice and saw himself. He's such a parrot, which is wonderful opportunity to get a lot of learning in while having fun at the same time. Have a great day!

At the Rainbow's End

On our way home from school two days ago, there was a strange mix of rain and sunshine. The kids were drenched from the heavy downpour while waiting for me to pick them up. Once in the car, I commented to the kids that we should be on the lookout for a rainbow. Within a minute, the kids and I spotted this rainbow stretching its colors across the dimming blue sky. You could see the entire arc of the rainbow and it appeared to be somewhere in our neighborhood. On their urging, we drove past our home to find the end of the rainbow. While we didn't manage to find a pot of gold, we did find beauty in God's creation. The brilliance of the rainbow on the right was so spectacular against the strikingly clear sky, followed by a second, less brilliant rainbow to the left. The kids were all saying what a beautiful gift God has given us. That alone was a beautiful gift for me.

One Sibling's Journey with Ds

The other night I was reviewing my sweet 9 yr old Anna's monthly writing journal and came across this entry from January 7, 2009. I always keep her journals, but don't always make the time to read each one. Wow, am I glad I found this one. It brought tears to my eyes since for the first months of his life, she wished John Michael wasn't part of our family. She's gone through her own metamorphasis and I'm so proud of her! Here 'tis...

"I have a big family; but one of those members gave me a little something I did not expect. That member is my little brother, John Michael. John Michael made me look at life in a whole new way. John Michael has Down syndrome. I don't like Down syndrome so I call it happy syndrome! DS is something that lots of kids have. When my mom was in the hospital and gave birth to him, the first thing they (the hospital) gave her was a huge binder full of information on what could happen not what will happen. I was not so happy about this Down syndrome thing. I had a meter for how much I loved this baby.

Time went, time passed and my meter went from 2 - 100! I love John Michael. Right now he waves, claps and when you say how big is John Michael he puts his hands in the air. He is 27 pounds and 13 months old! I (heart) John Michael. He changed my life a lot.

PS: John Michael is a good piano player. :-) (smiley face)"

John Michael Strikes Again...

A couple weeks ago, I posted about John Michael flipping over Mitzi's water bowl and tasting some kibbles. That was such a mess that I moved her food and water into the laundry room, out of sight. Mitzi adjusted very quickly, even though her feeding station has been in the same place for the past 4 years. Last night, John Michael struck again! He was playing contentedly on the kitchen floor with Greta while big sis, Anna, was doing homework at the kitchen island just above them. I ran to another room for a couple minutes and then came back to check on him. All was quiet, so I thought all was well.

Note to self: Quiet isn't always good...

Greta was no longer with him -- she was playing in the living room by herself. Anna was still doing homework. I noticed a piece of dog food on the floor next to him, but brushed it off thinking Mitzi may have dropped it. I reached down to pick up the little guy and as I lifted him, water started dripping from his footed PJs onto my foot. Huh?!?! He was cold and soaking wet! I looked toward the laundry room and saw a 10-inch wide streak of water as if he had mopped his bottom across my kitchen floor. Dog food was spilled in the laundry room and the water bowl was upside down. He has seen me feed the dog a couple of times in the new location, so obviously he has no trouble with his memory! Big sister, Anna, said she didn't even know he'd scooted away... so much for keeping an eye on him! It's not her fault, but I was frustrated. I carried him dripping to his changing table. He kicked up his legs and started sucking water from his water-soaked PJ-covered feet. Yuck! Presto chango, I dried him up, changed him and asked Anna to help me clean the water mess. Not sure what I'll do if he strikes again!

A Boy and his Dog

So this is what happens when I leave John Michael with Daddy and Mitzi for a couple hours... I'm just glad I wasn't there to see this!

Hey Mom! Check out our cool cars!

Old Fashioned Fun

I love the simplicity of this photo. I was busy cooking and monitoring my 9 year old's California Mission project and kept getting distracted by these two little ones. To occupy them I gave them "cars" (scrap boxes from my Costco excursion) and some wooden spoons to bang away. Greta added a red light and a map to her box. It helped keep them entertained as well as "contained" for a little while. I love when simple things like cereal boxes and rubber bands become the coolest guitars, empty plastic spice containers and split peas make great maracas, and Tupperware-type plastic containers turn into indoor skates. I'm curious... what kind of simple toys do your kids enjoy? If you enjoy this post, but don't usually comment, I'd love to hear from you as well. Please say "hi"!

The Water Boy

Half fish, all boy! John Michael loves water, whether it's from a faucet, a drinking cup, a showerhead, or the bathtub. Bathtime is especially fun when shared with big sis, Greta.

John Michael, Daddy, and Mitzi taking a break along the American River after a nice long walk and picnic lunch. He fell asleep in the Baby Jogger only minutes after this photo was taken. Nothing like fresh air and sunshine on a crisp, cool winter day (68 degrees!)

Just look at those eyes -- my glimpse of Heaven...

Nap, sweet, nap...

One of my favorite alone-time moments with John Michael is when he's ready for his morning nap. Of course, naptime is a welcome break for me regardless of the time of day, but it's really about the process of him falling asleep that I love. It's the closeness that reminds me of the 11 months he nursed and cuddled, allowing me to really know him. This morning, we took a walk on the nature trail, looking at rocks and trees, with our dog, Mitzi, alongside. John Michael heard an airplane, but I couldn't get him to look up high enough to see it. Maybe next time. Just as we were arriving home again, I could tell he was ready for a nap. I gave him a Binky and laid him down in his crib while Vivaldi played quietly in the background. Sometimes he settles down on his own and puts himself to sleep, but this morning he needed an extra nudge. So I picked him up and cradled him in my arms, his sweet head of fine blonde hair resting against me. One chubby little hand grabbed a few strands of my hair and the other hung down. We nuzzled each other, his tiny button nose so soft and supple. He struggled to keep his eyes open. I kissed the smooth, flat area of his nose bridge a few times. I felt his body go from soft to limp and his breaths become deeper and slower. It's in those moments when we are so close that, within minutes, he inevitably falls in a deep sleep. Ahhhhhhhh, peace.

How was your weekend?

I get asked this question every Monday morning, usually by several people. I should have a pat answer by now or at least give it some thought before taking Greta to preschool or John Michael to the grocery store. I might have been Mensa material long ago, but now I must seem "Densa" to those asking -- I'll say, "Busy" or "I think it was good." I tell you, my memory is getting so bad I can't really remember that far back. I don't have any negative memories of it, so I'm guessing it must've been good. Life with four kids and an active family means our weekends are always busy. I do remember putting away the last of the Christmas trinkets that had been forgotten, going to church, and picking up mother-in-law from the airport and not getting home until 12am (yes, midnight). But I'm sure there was more to it. I'm thinking I need to start up tennis again, take vitamins and do some logic puzzles to snap back into the here and now. I'm much too young to consider dementia as a possible diagnosis. Your turn. How was your weekend?

Emerging talents...

Looks like we have a budding Beethoven in our midst. John Michael loves to sit at the piano and pound away, but sometimes it's less about pounding and more about hearing the soft rhythmic harmonies and striking disonants, carefully choosing his notes. In the first image you can see his thoughtful, quiet composure and in the 2nd, his exuberant "anything goes" excitement. Finally, the composer is satisfied with his masterpiece. Sister Anna has been playing for 3 years now and is a great inspiration. These are actually snaps taken from video clips. In the background, my son, Nicolas, is playing jazz saxophone. Have a musical day.

John Michael's on the move...

I hope today isn't an indicator of how our year will be. John Michael usually loves Music Therapy and gives his full attention for the 45 minutes his therapist is interacting with him. But today, he only briefly played her games, helped her play guitar, reached for the rainbow scarves, shook the maracas and then kept crawling away as if to say, "Catcha later, I've got more amusing things to do..." 15 minutes after the therapist left, it was time to load the little ones up in the car to pick up the older two at school. John Michael and Greta were playing in the living room, so I ran to the closet to get my shoes. I came back to find John Michael sitting in spilled water from the dog bowl, munching on not one, but two tasty kibbles and one gooey kibble squeezed tightly in his hand. I pried it loose and fished out the chunks from his mouth. Ick! Nutritional value and grossness aside, it's a new choking hazard I hadn't even considered. I promptly lifted him, stripped off his pants and socks and changed him before dashing out the door. Out of habit (and love, of course), I buckled him into his carseat and kissed his little mouth. I distinctly smelled dog food on his breath. Oh, good heavens! That's just gross! So I'm thinking in the car on the way to school, "Is this the start of a crazy new year?" I hope not. I hope this was a fluke, but we'll see... The adventure has begun.

Looking Forward to a Great New Year!

Happy New Year!
2008 was a great year for our immediate family as we watched our sweet little infant grow by leaps and bounds into a crawling and spunky little boy. The changes that occur in the first year of a child's life has always amazed me -- everything is a "first" and so exciting. With John Michael, we celebrated the typical major milestones, like rolling over, sitting up, his first birthday, his first tooth, crawling, pulling up to his knees... But having a child with Down syndrome, we also celebrated every little step inbetween. John Michael has taught us to slow down and enjoy where he is in his development. Our therapists help us break down the major developmental milestones into smaller chunks which add to the joy as we cheer him on with each new victory. It was very difficult for him to reach up over his head until recently. His music therapy helped in this area greatly and now he responds to, "How big is John Michael? So BIG!" by lifting his arms up over his head. He just began waving back to us and clapping his hands when he gets excited. His comprehension of simple requests and names of certain objects and all his family members is a huge deal for us as well.
We know 2009 will be an even better year as he continues to grow and we continue to grow in our unconditional love of this little guy who has changed so many hearts in so little time. It's truly amazing what God has created. We know He doesn't make mistakes and we are blessed to have John Michael in our family. 2008 was also a HUGE year for our family in terms of meeting many people, some who have a loved one with Down syndrome, who are drawn to John Michael in some way. I know God has called me to advocacy for this little guy and others like him. I'm ready for 2009. Hang on, here we go.................

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.