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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.

It started out as any other first day of school...  nothing much out of the ordinary... My 4th and 6th grader get up at 6:30am and do their morning routine as if on auto-pilot:  eat breakfast, put on school uniforms, brush hair, brush teeth, make bed, make lunch, empty the dishwasher, put on shoes...  Up until that point, everything was flowing quite well.  I sit down for breakfast -- "Mom, we're out of milk."  What?!  Why didn't anyone tell me we were down to the last sip BEFORE the first day of school.  I loathe black coffee.  Sorry, Honey, we're out of half and half, too.  Oh, no, this is not good.  7:40am, buckle baby and preschooler into car seat, load backpacks and lunches and requested school supplies, older kids buckle in and we're off.  

Maybe it's my ambitious nature to want to be involved in all things, but it didn't all go as smoothly after that, either.  Nic told me there would be a morning assembly meeting.  OK, I thought, I can miss that since it gets pretty loud for the baby.  I'll just come back for the back to school coffee at 9:30am.  I meet the new teachers, kiss everyone goodbye and wish them a great day.  Say hello to a few parents and head back home to have breakfast.  The little ones were too hungry to first go to BelAir, so we drove the 3 miles home and ate frozen waffles and oatmeal.  Sorry, we just ran out of orange juice, too.  How about some of that yucky tasting Vitamin Water?  I fed the baby and buckled the 2 little ones back into the car.

We were about 10 minutes late to the back to school coffee.  I poured some black liquid into the styro cup and watched the mom in front of me pour the last drop of French Vanilla Coffeemate into her cup.  Wahhhhhhhhhhh.  I'm feeling whiny at this point, but don't let it show.  It's OK, I tell her, I'll just use a couple drops (literally!)  The mom I came to get to know better was just leaving and my other friend wasn't there at all.  I made some small talk while Greta fed some blueberry muffin to John Michael and then started crumbling it up because it's fun to play with, I guess. 

One mom says, "See you back at noon."  What?!?!?  I thought they were in until 3:00!  Turning 40 and having 4 children is seriously making a dent in my cranial mush.  I decide that it's my only chance to get to BelAir for some much needed groceries, but I'd have to do it in overdrive.  Greta doesn't want to leave -- she's mad because she doesn't want to leave her friend that she just spotted up the hill.  John Michael just goes along for the ride.  Thank God he's relaxed about it all.

I make it through BelAir, get home at 11:15am and unpack the cold items as frantically as possible.  Gotta go fast!  I realize I'm really NOT Superwoman and it's OK if the cereal, for which there was no milk, are still on the table.  Greta wants to watch a show while I nurse the baby.  He drifts off after 8 minutes or so.  I lay him down so I can finish putting groceries away.  Oops, it's 11:55am.  Time to go, don't want to be late!  But Greta wants to finish her show, it's almost over...  Sorry, off!  Baby is sleeping so soundly, I hate to pick him up and strap him into his carseat once more.  Sorry, rush rush rush!  

Back in the car I call my husband to chat.  I just need someone to sound off to.  This wasn't at all what I'd planned for my first day of 1/2 freedom.  Oh, well.  There isn't much I can do about it, so I'll just take a deep breath and move onto the next thing.  Eventually it'll all get done.  I'm happy to see the older kids.  I'm surrounded by my favorite people and life is good.  It wasn't ordinary at all, but maybe that's OK.  Sometimes it's the extraordinary that makes life worth living.  Happy back to school.

 

 

 

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. Kids with Down syndrome are often more easy-going, but just because he doesn't complain, doesn't mean he isn't uncomfortable or deserving of more attention. I took his sweaty, soft body and bounced him on my knee to the beat of Dee Dee, Rooney, and Moe. The higher I bounced him, the harder he giggled with joy. Anna said, "I'm bored." How could this be boring? I thought to myself.  Nicolas danced on his knees alongside Greta 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...

http://www.r-word.org/

"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. 

Nine 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.