September 25, 2009

stop the maddness

When I was pregnant, I signed up for this great thing from the What to Expect website.  They sent weekly emails saying how big the baby was, what parts were growing and how to deal with all sorts of pregnancy things.  Then as your baby is born, they send weekly emails on what kind of milestones you baby should have reached and what will come next.  For monkey bear, this was great information.  For my buddy, this is a weekly reminder of what he isn’t doing.  Finally, after 11 months of this self torture, I unsubscribed.

Clicking that button was easy, but the constant comparisons are not.  I can’t help but look at monkey bear’s baby book and think to myself… “if she played peek a boo at 6 months, and he’s doing it at 11 months does that mean intellectually he is 6 months”.

I have a handle on the physical side of things because I can imagine how things will progress and how it will just be slower.  But what I can’t seem to figure out is the intellectual side of things.  When he is 3, will he only be able to grasp concepts that a 2 year old would?  And how does one set up reasonable expectations for his behavior.  I assume once we are there, it will make sense to me.

Tomorrow I will be attending my first big Down syndrome event - The Buddy Walk.  I hope to leave there with bright hopes for my buddy’s future and to stop the comparison maddness.  I want to look at my friend’s daughter, who is a week older than my buddy, and appreciate her for her and not compare what she can do to what he can do.  I hope that seeing so many amazing kids with Ds who are able to do all sorts of things will light flames under my glass so I can see that it is half full.

September 19, 2009


Even on the most grumpiest of days (me, not them) my buddy is always there.  Monkey bear seems to feed of my bad moods and gives it right back to me.  But my buddy… he’s a one of a kind.  He is still super chubby and just loves to snuggle.  Lately when I pick him up, he tucks both arms under his body and puts his little head on my shoulder nuzzling in.

Another positive of Down syndrome is the extended baby stage.  My buddy has been in that super cute baby age for a while and I’m guessing he’ll stay there a little longer.  The other day, he was sitting in the curtains playing peekaboo with me.  I didn’t think developmentally he would be able to do that, but there he was peeking out over and over again.

My buddy has the best belly laughs.  Monkey bear just has to look at him and smile and he laughs and laughs at her.  She is the sun about which he revolves.  One can hope as teenagers they will get along about half as good as they do now.

I keep bumping into these stories about the decline of Down syndrome because so many people are choosing to abort when the prenatal diagnosis comes in.  I can’t ever get past the first paragraph.  I wish they could see my buddy and see how he is just a baby looking for love and attention.  Just a little being wanting to be snuggled.

September 14, 2009

small taste

I got a small taste of the positive side of Down syndrome recently.  Every milestone for my buddy so far has been reached in very small increments.  One day he can lift his head 20 degrees, the next week it’s 30.  If you see him every day, it’s hard to see how far he has come.

Until now.

My buddy one day was simply commando crawling about and rolling around.  And the next day he could sit up all on his own.  We had been working on this for at least 5 weeks.  I had sort of put it on the back burner while we focused on kneeling to strengthen arms and stomach muscles.  And then like magic, he was sitting up.

He’s been doing it for days, and still I think it’s the cutest thing I ever saw.  I spend so much time watching my buddy push himself right up.  I am just so proud and want to tell everyone I know.  Of course, they don’t really get it.  I wouldn’t have either.  Who knows when monkey bear sat up on her own.  It wasn’t something that got written down in the baby book or photographed.

If just sitting up feels so great, imagine when he can stand on his own or even *gasp* walk.  What so many other parents of children with Ds have said is finally making sense.  My buddy worked so hard to learn this new trick, and will have to work so hard in everything he does, that the rewards are way sweeter.

September 12, 2009

2 going on 32

Monkey bear, at the ripe old age of 2, is becoming an adult.  She has decided to call me “Mom” with a special emphasis on the last ‘m’ as if she’s letting me know that she no longer needs me.  She is clearly all grown up.  Monkey bear talks in full sentences using such words as “probably” and “actually” usually with a hand on her hip and the other one flying about in the air.  She insists upon eating everything with a fork and spoon - even grapes - and requires a napkin to dab at her mouth.

Just the other day, monkey bear informed me that there is a little baby in her big belly.  Her babies go with her everywhere and she takes care of them nonstop.  Feeding, bathing, changing diapers, and doing exercises… just like Mom does with my buddy.  She holds them ever so gently in her arms while shushing them and rocking side to side.  I can picture her 3 feet taller doing the exact same thing many years from now.

I have taken care of many toddlers and none of them have been quite like monkey bear.  Perhaps she knows how many gray hairs she gave me as an infant and is making up for it now.  I can leave monkey bear alone in a room with a box full of crayons and some paper and she will only draw on the paper.  When she wakes up, she calls my name and patiently waits in her bed for me to come and get her.  Give that girl a rule and she will follow it.

Some days I wonder if I had something to do with how she is turning out… then I get a look at my buddy.  Already he has pulled lamps over, gotten into every shelf he can reach- books, puzzles, desk items- eaten shoes,  eaten paper, and tormented the cats in general.  I see many years of trouble ahead of me, but at least monkey bear will be there letting me know a rule is being broken.

September 8, 2009

the little things

When you first have a baby with Down syndrome, you read any information you can get your hands on.  In those first weeks there was so much information - heart defects, hearing loss, vision problems, developmental delays….  It goes on and on.  If you are lucky, you find a person or two who has been there and can be a huge supporter.

As time goes on and you meet more and more people, you learn the little things that they don’t put in books.  Kids with Ds often like to wander off and parents find they need to lock the kids in the house with them.  They aren’t potty trained, on average, until age 5. Sippy cups promote tongue thrust, so you have to use a straw cup.

Next, I learned about the physical characteristics that I ended up loving.  My buddy has the most beautiful brushfield spots in his eyes and this adorable space between his big toe and the one next to it.  So far his flat nose is the cutest button nose ever.

As my buddy grows, I wonder what other things will take me by surprise.   I also wonder what milestones will hit below the belt.  Will he be able to feed himself cake on his first birthday?  Will I ever get a photo of him without his tongue sticking out?  When will he be able to say “Mama”?

And then there are all those fears about the future.  I don’t want kids to make fun of him.  I don’t want life to be harder on monkey bear having to defend her brother.  What will he be able to accomplish in his adult life?  Will there ever be a day when I don’t think about Ds?

For now, I take each little victory and accomplishment and savor them.  And those hugs… forget about it.  Plus, who cares if that huge smile only has one tooth!

September 7, 2009



My buddy has been stuffy lately, so in order to help while he sleeps, I propped one end of his mattress up. So now there is a gentle incline in his crib. I put my buddy down for his nap and listened to him make noises for a while. Then I peeked into the video monitor and…

He was sitting up!!!!! I have been working with him for 5 weeks on sitting up from laying down. (along with getting down gracefully)

I spent 10 minutes glued to the video monitor watching him get up and down grinning from ear to ear. He just needed a little boost against gravity. I bet a few days of practice in his bed and he’ll be able to do it on the flat floor.

It’s funny how the little things matter so much more with him. I don’t even recall when or how Monkey bear learned to sit up. All I know is I didn’t teach her. Other kids my buddy’s age are pulling themselves up to stand or even walking, but today that doesn’t matter. He pulled out a new trick all on his own and I couldn’t be more proud.

September 6, 2009


When we decided to have a second child, I had no idea how our family would change. When I had a newborn and a 15 month old, life was a blur. All I knew was that two was WAY harder than one and I couldn’t see past all the diapers and daily needs.

Now that they are 2 and 10 months, I can begin to sit back and enjoy. Monkey bear likes to crawl around saying, “I get into trouble!” pretending to be my buddy. Her other favorite activity is for me to do my buddy’s exercises with her.

Monkey bear always demands that my buddy be put down on the ground for her to enjoy. No one can make my buddy laugh harder than monkey bear. And he stares at her with such admiration.
I am endlessly amused by the two of them. They have this amazing love for each other. I knew that my heart would grow enough for two children, but I didn’t even consider how much their hearts would grow.

September 5, 2009

does that reallly exist?

Today we had an appointment with the ENT for my buddy. We are so lucky that he hasn’t had any major health issues, yet still I find myself always at another doctor’s appointment. My buddy had some major fluid in is ears that was effecting his hearing. The fluid has subsided a lot and his hearing is almost back to normal. That leaves us with multiple visits to the ENT and audiologist.

Some days I find myself feeling bitter about Down syndrome. I love my buddy with every bit of my heart. I try and tell myself that Ds is a huge part of who he is and he wouldn’t be the same without that extra chromosome. But deep down, I don’t really believe myself and wish he didn’t have it.

I’ve been searching for books that explain what life is like for a mom with a child with Ds, but nothing has satisfied me. Perhaps 10 months isn’t long enough to get over the loss of who I thought he would be. I want to be that mom who inspires others and is happy that her child has Ds…. but does that really exist??