Great Expectations

My friend Michelle spoke today about goals and expectations for her amazing little girl Hailey.  She talked about how she is learning not to underestimate her daughter.  Hailey is adorable and spunky, a true little hurricane who is doing some exciting things.

It can be so hard to know what and how much to expect of our children, those with disabilities and those without.  Raising our expectations too high can lead to disappointment and children that may never feel able to measure up.  Putting so much emphasis on achievement can take away the importance of the process, the learning and the little steps; things which can often be more valuable than the end result.  When all that we value is material success and ivy league educations, where do the rest of us fit in? 

But we also know that expecting too little can lead to... well, too little.  When society didn't believe children with Ds capable of learning, they weren't given the opportunities for education.  When our society didn't believe them capable of integrating into society, they were locked away, and worse.  So expectations have to rise... don't they?

We know that by raising our expectations of people with Down syndrome and cognitive disabilities, we are finding people again and again rising to meet them.

On a personal day-to-day level, managing expectations is hard, too.  Sometimes the waiting, waiting, waiting for the slowest of progress keeps you questioning expectations.  Some are reasonable.  I know she will walk, even though it seems to be taking forever.

But there are other questions that are legitimate.  Like will she ever use speech as her primary communication?  There is a chance that she won't.  Will she ever go to college or get married?  Will she ever live on her own and manage money?  I really don't know.  Does creating these expectations put too much on us both?  I am hesitant to expect her to do these things, because I want it to be OK if she doesn't.  But I also don't want to limit her by putting my expectations too low.  

As my husband says, removing expectation is the way to go.  But is that really possible?  And if I stop expecting Cora to speak, to read, to communicate, to develop independence and pursue her own interests, will I stop supporting her growth in those areas? 

Or am I just over-thinking it way too much?  Either way, she is growing and developing.  Even when it seems so slow that I can't see it.  I can question these things all the live-long day, but I'm not sure if it really even matters.  The one expectation I can't seem to question is that she'll be amazing.  And there is no doubt that I believe in that.

Chill out, Mama!

3 (21) Down Syndrome Blog Hop!

One Truth:

As much as I ADORE my little girl, there are times when it feels like it all sucks.  Periodic twinges of pain when I feel sad about the things that she is not doing yet, and may never do.  Days when all the appointments and worries and stresses feel overwhelming.  Days when I just want to talk about it all without feeling like it means that I don't love her through and through.

These moments don't make me a bad parent, and don't diminish my love for Cora.  They just make me human.

One Tip:

Don't underestimate your child's intelligence.  A cognitive disability or limited verbal communication does not mean that your child is not smart. 

Assume that your child can understand you.  Especially when it comes to ice cream.  Assume that your child understands everything about ice cream, including signs, finger spelling, and all of the code you will come up with.  Children seem to come equipped with a radar for these things.  At least mine does.

One Photo:

Move your Body!

Cora has been loving this summer.  We've been spending many hours at the park, where she has been climbing and swinging, sliding and walking (with assistance).  It's been a blast.

Today we got to go the very cool park by Grammie's house. 

Cora brought her new favorite thing:  her ybike!  She's recently discovered the joys of riding it, but hasn't ridden it outside much, until now.  What an amazing thing, to have her "running" along beside us, upright and without holding onto our hands.  Most of the time she rides by standing up and running along, although she can sit when she gets tired.  It's really great practice.  I think I'm getting a taste of what it feels like to have a truly mobile, quick little toddler. 

The platform swing was pretty exciting too... with good core-stability practice too!

Cora practiced her cruising skills along the rope net to get to her Grammie.  Look at her go!

Then Grammie helped her do some rope walking.

And don't forget about making some beautiful music.

What a gorgeous morning at the park! 

A New Baby Cousin

The festive long weekend was pretty mellow.  We traveled to visit Nick's sister and meet her new three-week-old baby girl, Miss Adelyn.

And oh, what a sweet baby girl she is.

Cora had a much better time than she has around babies in the past.  She was curious and interested, and spent a lot of time watching her new cousin, smiling at her new cousin, and even gave her a couple little kisses.

Not too sure about having her up close at first.

Getting closer to check her out....

Thinking of giving her cousin another kiss goodbye.  But no kisses for crying babies.

Instead of fireworks and parties, we took walks to the park, listened to some live music, and got in our snuggles with the squishy little miss.

Uncle Nick getting some time with his new niece.

We are so excited for the newest addition to our family, and are so happy for the new parents. 

It makes me so happy to see Cora as the big girl, a big cousin.  We can't wait to see little Adelyn again.

"Bye, Baby Addy!"

A Girl and Her Chicken

More, Please!

The day after my whiny tired-of-being-constantly-sick post hit the air, we finally felt well enough to get outside.

So without anything really to say, I just wanted to share the joy of finally escaping the house, after the end of our most recent quarantine.  Such bliss!  Since such activities seemed like mere fantasies just a couple of days before, I had to share a little bit of our happiness with the world.  Our summer to-do list is being checked off.

My little model lounging in the back as I got her barely-used water table ready.

Happy to be outside!

Today, feeling even more like ourselves, we set out to enjoy one of Portland's beautiful outdoor pools.  Cora was in heaven.  We were having too much fun to get any water pics.

Carrot-faced at the pool!

We just may be sharing more of our summer adventures for the next few weeks, if the fun continues.  Just so happy to be out and about.

Thank you to everyone for all your well wishes.  They mean a lot.

Can't Wait

I've written several self-pitying blog posts in the past couple of months. Although a couple snuck out, I didn't publish the rest.

After sitting on them, it just didn't seem right to put my sad, negative words out there.

But trust me, they've been stewing around in my head.

The last couple of months have been rough around here.  We got pretty sick in February, and then in mid-April when Cora got pneumonia, she and I started a cycle of sick that just hasn't stopped.  In the past 9 or so weeks we've had only about 3 weeks without illness.

It's her or me or both of us together.  We're finally both on antibiotics and are on the mend, but are still tired and coughing and just not quite there yet.

And it's been so hard on me.  I have been a whimpering ball of depression.  Zero motivation to do anything beyond alternating episodes of The Office with Signing Time.  We've been holed up in the house watching the world zoom by, missing the spring and early summer and certainly not doing it very gracefully. (Just ask my husband.)

I am so hoping that this is the end of this.  I have a theory about what's been going on with our immune systems, and hoping that things will be looking up.

In the meantime, I am fantasizing about lake swimming, hosting barbecues in our new backyard, and taking Cora out into the excitement of our Portland summers.  I want to make mojitos and go on bike rides, visit yard sales and go to outdoor pools.  I want to make it out of town to meet Cora's brand new cousin without worrying about getting her sick.  I want to have a reason to take a shower and put on clothes.  I want to stop freaking out about Cora's breathing and watch her really have the energy to start to take her burgeoning mobility to new levels.  I want to laugh and sing and play, wear sunscreen and eat popsicles.  I want to see my family.

I want to get over this crud and enjoy our way too short summer.