Monday, April 29, 2013

Life on Hold

I feel like we're just now coming out of our little hovel.

Cora's been home from the hospital for almost a week, but I was hit pretty hard during her 4-day hospital stay.  Today, after 10 days of being sick, I finally ventured out of the house.

So that makes two weeks lost to sickness.  As scary as it is obsessing over your baby's breathing, and as helpless as you feel stuck in the hospital, or sitting at home feeling miserable, there's nothing like coming out the other side.  I admit that I still can't smell anything or walk very fast, and that Cora still has an amoxicillin rash marking up her cute little face.  But we are definitely on our way to well, and happy to be here.

Today we ventured to a park for some happy swing time and went on a glorious walk.  Last night we had dinner with my Dad, who was in town for a seminar. 

Otherwise, life has been on hold.

I am looking forward to the adventure of spring, to warmer days and time spent outside.  To trips to see family and friends, time spent camping, and a summer road trip or two.

And to appreciating many, many more of these smiles.

Friday, April 19, 2013

Pneumonia is not my friend

We're writing from our lovely room at the Children's Hospital where Miss Beanie is duking it out with pneumonia.

Yes, it sucks.  Her first real immune sickness occurred a couple of months ago, so we've had the impression that she has a good little immune system.  But we knew that she would be at increased risk for pneumonia in general since she had a severe bout of aspiration pneumonia last year after her tonsillectomy and adenoidectomy.

We were just hoping to avoid it.

But no dice.

She's been sick since Saturday, but had started to get worse on Wednesday.  Then yesterday she was very weak, pale, listless and sleepy with a fever over 102 and some vomiting. Then I noticed her ribs retracting with each fast shallow breath.

I am definitely a bit of the over-reacting mama bear.  Nick, ever rational, doesn't always immediately jump to the conclusions that I do.  I agreed to wait the hour until he got home before heading out of the house.  But after he got home from work he agreed pretty quickly that we should head to the ER.  I already had our bags ready to go.

Her oxygen saturations were in the low 80s in triage, so some time was spent getting her on oxygen, getting in an IV with fluids and antibiotics and getting a X-ray.  Pneumonia and dehydration is the diagnosis.

Last night held very little sleep for us. Maybe 4 hours for Cora, a bit more for Nick on the cot, and less than an hour for me.  Her O2 levels kept dropping during her sleep, her lungs sounding more crackly, and her breathing getting shallow and labored again. Even though we're just on the pediatric floor, it felt more like ICU care since we had nurses, doctors, and respiratory therapists in the room every few minutes all night long.  No wonder we didn't sleep.  And the rest of the time I was watching the monitors and watching her breathe, ever the worrier.

With a couple nebulizer treatments in the early morning, a CPAP treatment around 8am (which were so miserable for her last year) and continued oxygen and antibiotics, she seems to be improving.  For now we just have to wait and see how she does.  She has to be OK without oxygen and without fluids.  Her breathing is definitely the more serious thing to watch, but keeping her hydrated on her own seems a bit daunting.  We've been in the throes of some epic biting/partial weaning/finally deciding to use a cup once in a while, then refusing most everything while sick.  She's 2, she's stubborn and she's sick.  So we'll just see.

So she's got her to do list with a couple big items on it.   Keeping fingers crossed that she can keep getting better and start drinking enough.  Optimistically we could head home tomorrow but it's all up to Cora.

Come on, girlie!

Thank you for your kind thoughts and prayers.

Exhausted girlie getting a snooze on Daddy's chest. 

Tuesday, April 16, 2013

Finding Hope

My emotions are running the gamut right now.  There seems to be so much to fear, especially after seeing the horror of the bombing in Boston and the ongoing concern and frustration over the responses (and lack of responses) to Ethan Saylor's death.  Last week many of us bombarded Twitter with #justiceforethan.  I finally signed up for a Twitter last week for the sole purpose of participating in the vigil and and my Twitter account was suspended the next day, presumably for spam.  Sigh.  I'm still waiting for a response to my appeal now.

Cora's recent illness with fever has resulted in even less sleep in our house, which is saying a lot, since we are in a perpetual state of sleep deprivation anyway.

So what is it that is keeping me goingWhat is keeping me from feeling like throwing in the towel?

Last weekend Nick and I attended All Born (In), the Northwest Down Syndrome Assocation's yearly conference on cross-disability inclusion.  The prior year I went and tried to focus on details relevant to the toddler/baby years with some sessions on IEPs and rights, etc. And it was all a bit much for me.

This year I went looking for a bigger picture.  And you know what?  I found just what I needed.  I can't even tell you how many times I had to wipe away tears as I heard the testimonies of several incredible speakers.

I listened and learned about how to raise a visionary by keeping your own vision always in sight.  I re-affirmed for myself the importance of presuming competency in our children.  It is so easy to constantly question, so I am glad to have been reminded that perpetually questioning our own children's abilities can be more limiting to them than their disabilities. 

But the most poignant thing I heard, and which rang true in that way that truths so often do, when you realize you've known it all along, is that our hopes must be bigger than our fears.  

Our hopes for our children and our belief in their gifts, strengths, and abilities has to be stronger than the fears that they won't be accepted or that they won't achieve, or that even worse things may happen.  These words were especially difficult for me in light of Ethan Saylor's death.  The fear of my child suffering that kind of abuse has the power to incapacitate me.  And I can't give fear that kind of power.  I can't let it take over me, and I certainly can't let my fear limit my daughter.

Each person has gifts to share with the world, a way to contribute to their communities and their societies.  As parents it is up to us to help our children discover and realize these gifts.  It is up to us to be creative, to be brave, to make ourselves uncomfortable, even, as we help our children be seen, as we help our children form relationships and become contributing members of our society.  The last thing I want for my child is for loneliness to become a hurdle more disabling than any diagnosis could be.  Giving my vision of her life over to my fears could well help those fears to come true.

Yes, horrible things do happen.  It is so hard to erase our fears that our children will be victimized as a result of their disabilities.  But we must try.  We must try to keep our own visions BIG enough to outweigh our fears.

Thank you to All Born (In), to Connie Lyle O'Brien for reminding me of the importance of hope over fear, and to Roberta Dunn for helping me refine my visions, especially when the world looks so dark.

Saturday, April 6, 2013

Two Years Ago Today

Two years ago today...

My baby's tiny 9 pound body was sedated, anesthetized and sliced open; her little heart stopped so that it could be fixed up by skilled hands.

Two years ago today...

I had to trust that I would see her smiling face again, as I handed her to a team that could do for her what I could not.

Two years ago today...

She had the chance to start again; whole and healed.  And we too were given the gift of starting anew.

I have no doubt that Cora wouldn't have lived much longer without that surgery.  Waiting for that day to arrive, watching her struggle, and watching myself dwindle as my fear started to erase me...  It's a hard time to remember. 

Thankfully, the lives we have been living since that day make that time seem like a smaller and smaller part of our lives; a smaller part of Cora.

I am so grateful to be able to reflect on those memories, to remember my love and my fear, and then to look at my smiling, silly, sassy, stubborn, defiant little girl.  Happy heart day to us.

Friday, April 5, 2013

The Death of Robert Ethan Saylor- A Mother's Greatest Fear

I have been struggling lately.  Wanting to add my voice to the throngs trying to be heard, but unable to really put my words together.

And I've been afraid.  Oh, there are so many things to be afraid of as a parent.  Add a disability that makes your child many more times likely to be a target of abuse and the worries just multiply exponentially.

The death of Robert Ethan Saylor has been making this fear seem so much more real.  This is a man whose death was blamed on Down syndrome.  Although his death was ruled a homicide, no charges are being filed against the three officers at whose hands he died.

At this point the talk is all about providing training so that these types of situations don't occur again.  And of course they are needed.

But the investigation into Robert Ethan Saylor's death seems to have stopped after the grand jury ruling.  There is a large push by families of those with Down syndrome and other cognitive disabilities to instigate an outside investigation, one that has not been performed.

The fact is that a man died.  The world can try to blame Down syndrome or a heart condition or argue that his parents failed and that he shouldn't have been left alone.  But to all of the parents who are raising children with intellectual disabilities, parents who are trying to raise children with some kind of independence, children who are able to not only be a part of but actually contribute to our society... what kind of message is this sending us?  What kind of message is it sending our children?

We know that our children are worth it; that they are valued human beings.  But wiping Mr. Saylor's death under the rug and accepting that Down syndrome is to blame leaves all our children vulnerable.  How can we send our kids out into a world that views their abuse as justified?  How can we settle for the message that our children are worth less?

We must speak out.

You can speak out too, if you haven't already.

You can sign the petition at for an independent investigation of Robert Ethan Saylor's death.


You can write to the U.S. Department of Jusice by e-mail or by mail:  (Thank you to my friend Meriah for posting this information along with the sample letter than I am including here.)

U.S. Department of Justice 950 Pennsylvania Avenue, NW Washington, DC 20530-0001
According to a press release from  the State’s Attorney for Frederick county, Robert Ethan Saylor died as a  result of three individuals’ actions on January 12, 2013 in Frederick,  Maryland. His death was and remains classified a HOMICIDE.
Robert Ethan Saylor was a healthy, 26-year-old man, who also had Down syndrome.
However, the above press release also states that Robert Ethan Saylor  was “…compromised by his Down’s syndrome…” and concludes that no  criminal charges are necessary in Mr. Saylor’s death.
I believe  that the above decision speaks to a continuing bias in society to see  Down syndrome as a disease, those with Down syndrome as lesser humans  and not deserving of the same respect warranted to those without Down  syndrome. I strongly believe, and do not stand alone, that it is a  violation of basic human rights to view Mr. Saylor’s death as somehow  due to his genetic makeup when his death has been classified a HOMICIDE.
I’m contacting you today to ask you to launch an independent inquiry  into the death of Mr. Saylor. I am asking you to prove to me that your  department believes in the humanity and equality of everyone, including  those with intellectual and developmental disabilities.

Monday, April 1, 2013

Family Love

Have I mentioned that Cora has a hilarious and incredible family?

Yep, it's true.

We make each other laugh till our sides hurt.  Cora's funny bone was definitely acting up this weekend.

She explored, laughed, climbed and entertained.  She ran from her little second cousin, Ewan, only allowing him close when Signing Time was on. 

She showed off one of her new signs... "Dana" whenever her beloved Auntie was in the room.

She had some great moments with Grammie and Grampie.


Signing "Dana", maybe?

She was somehow the center of attention in a house full of some of my very favorite people.

What a lovely weekend it was.