Accidental Ambassador

When I was pregnant with Lily and researching Down syndrome I often saw the same sentiment expressed by parents.

"Going out in public is like going out with a rock star."

And it is kinda true.

Everywhere we go people know Lily by name.

At the school, at the gas station, at the grocery store.

They know her by a name and are always happy to see her.  I will even have cashiers on break stop us as we shop or come by my aisle as I am waiting in line to talk to Lily.  When she is not with me they ask where she is.  I am forbidden to stop at the gas station to buy a soda without her.

She's a rock star.

But with that comes this pressure.

Right now she is precious and adorable and full of smiles.  They are always happy to see her.  Will they be as happy to see her when she is a defiant three year old with (hopefully) word and (hopefully not) tantrums.  When she is a big girl?  When she is a teenager?  When she is an adult?  Will they be happy to see her?  

I feel like every interaction someone has with Lily is a chance to shape how they feel about Down syndrome.  

And I want their experiences to be positive.

So there is pressure.  Suddenly we are DOWN SYNDROME.  And the way Lily acts will become the idea that person has of all people with Down syndrome.

She must be very clean.  Her clothes must be cute.  Her hair must be done.  She must be smiling.

Because if she is perfect they just see a cute kid.

But if she is dirty.  If she is disheveled.  If she is acting like the naughty two year old she is they no longer see a kid.

They see a diagnosis.

They don't think she had to be taken out of a concert to roam the lobby because she is two and there are five other two year olds in the lobby and this is typical two year old behavior.  She couldn't sit through the entire concert because she has Down syndrome.  She isn't dirty because she is two.  She is dirty because she is disabled and no one loves her enough to keep her clean.  Any negative attribute is no longer a typical part of human development.  It is caused by her diagnosis, and her diagnosis alone.

She loses her identity as a human being.  As a person with dignity worthy of compassion.

She becomes a diagnosis.

And it makes me so mad and sad and tired.

Being Lily's mom isn't hard.  Being Lily's mom with the expectations and attitudes of society is hard. 

Monday Thoughts

When Lily had her tonsils out and was in the pediatric icu the nurse took a complete medical history from us.  It was very indepth and in all honesty quite frustrating.  The nurse even said to us that all this information was in Lily's chart, they just wanted to see how well the parents understood the medical history.

What?

So we went over her history from birth.  The jaundice.  The feeding issues.  The heart condition.  The thyroid.  Her audiology history.  Every illness, doctor visit and medication was discussed.

At the end the nurse asked if there was anything else I would like to add about my child's health.

"Nope.  I think we covered it all."

The nurse prodded me a little more.  But I had nothing to add.  She seemed dissatisfied with my answer but eventually accepted my no.

Her behavior confused me.  She was obviously fishing for something, but I had nothing more to add.  We'd covered all the therapies, the delays, the specialists.  What more was there to say?

Upon further reflection I realized I had never once mentioned that my daughter had Down syndrome.

Whoops.

When I was given Lily's diagnosis of Down syndrome it consumed me.  I thought about it constantly.  I researched, I cried, I worried, I researched some more.

It took over my life.

But now it is such a small part of my life.  So small I didn't even find it worthy of mention when discussing my daughter.

It does not affect my day to day life as I feared it would.  I am not caring for my child with Down syndrome.  I am just raising my daughter.  My funny, loud, sassy, silly daughter.

If I gave it some thought I could come up with ways Down syndrome impacts my daily life.  If I compared my child to another almost two year old I am certain she would come up short in the developmental milestone measuring stick.  But I don't care.  I don't care to compare.  I am no longer that first time Mom consumed with the development chart, beaming with pride when my first born child meets each milestone early.  Not that there was anything wrong with me at that stage in my life, and not that I shouldn't have been proud.  I was and still am.  But I have learned that the timing of the milestones is not as important as the actual progress and growth.  Lily grows and learns every day.  She works steadily towards those milestones.  Who cares when she reaches them?  She will get there and I am enjoying the journey.

I could focus on all she doesn't do, but that is the saddest measurement of a person I can think of.  My Husband comes from an incredibly talented artistic family.  They can draw and paint in a way that seems like magic to me because I can't.  I am creative in my own ways.  Music, writing, crafting.  I create in my own ways.  But I am not artistic.  I can barely draw a stick figure.  How sad it would be if my Husband's family only thought of how I can't draw instead of what I can do.

Why do we measure development by what hasn't been achieved yet?  It is one thing to assess what she isn't doing from the angle of "How can we help her achieve?"  It is another to have a stranger ask if she talks yet, and then look at me with pity when the answer is no.  She will talk, and I will love hearing all her thoughts in her sweet little voice.  We will get there someday.  In the meantime, she signs, she points, she makes her feelings known.  Speech is not the only means of communication, and does she communicate with me?  Yes.  Yes she does.

I hope when people look at my daughter they will be able to see past the "disability" (I use quotes because I have such a hard time reconciling the fact that my child is classified as disabled.) past the list of things they think she "should" be doing.  And instead I hope the world will see who she is.  Her joyous spirit.  What she can do.

Am I hoping for too much?

Toddler Life

As her second birthday rolls up on us Lily has firmly established her new identity as a toddler.

Don't be fooled by the idea that children with Down's syndrome are always happy.  Lily has mastered the toddler tantrum.

Wether she is all done shopping...

Or angry that I won't let her run in the street...

Lily has learned to express her displeasure in no uncertain terms.

And while we're busting myths about Down syndrome, let's talk about the idea that all people with Down syndrome look alike.  While it is true the diagnosis is accompanied by certain physiological markers how can anyone look at her nose,  and my nose, and not know we are related.  She is definitely my kid. (Sorry about the nose Lily.)

I've decided to pull Lily from all her therapies.

They are a bad influence on her.

She can now get into pretty much anything and anywhere.  Below are exhibits a-d.

Her OT actually wants to teach her to unscrew the tops of bottles.  She is not ready for that kind of responsibility.  She would never use that power for good.  She would use that power to open a gallon of milk and dump it in the dog's bowl, and by dump it in the dog's bowl I mean try to dump it in the dog's bowl and empty it all over the floor.  The floor that is perpetually covered in dog food because Lily can open the pantry door to access the dog food.

Thanks Therapy!

But she is also full of toddler hugs and giggles.

And Christmas is extra magical with a toddler in the house...

So it isn't all bad.

I just can't believe she is almost two.

How did that happen?

The Mango Memoirs

If you're not reading The Mango Memoirs you should be.  It is a sweet little blog about a beautiful family whose second child happens to have Down syndrome.

Angela does Down syndrome awareness month much better than I do.  Each day she has featured words from a family who has been blessed by Down syndrome. 

Yesterday she used her platform to share my words, to share my story.  

My sorrow at learning my beautiful perfect daughter would have Down syndrome.  And my joy at getting to know my beautiful perfect daughter who just so happens to have Down syndrome.

If you're so inclined you can read the post here.  And if you've got some time read all the posts from October.  They are all beautiful.  

October

For someone who wanted to participate in Down Syndrome Awareness month I sure dropped off the face of the planet didn't I.

Sometimes I get too busy wrapped up in the proper care and feeding of my tiny toddler (and I do mean tiny, she's still in 6/9 month clothes) to leave room for anything else.

October has been no exception.

And it was a big month for us.

Lily got her tonsils out and ear tubes put in .

I'm not entirely sure why it changed, but in August things changed for Lily.

She had lots of instances of strep throat and tonsillitis last winter.  And every one who looked in her throat when "Wow, her tonsils are HUGE!" But around August they became an issue.  Her breathing became noisy and congested sounding without any mucus to explain it.  She completely reverted in her feeding therapy to bottle fed all the time, refusing her straw cup and eventually all food.  She started snoring and having episodes of sleep apnea.

We saw two different ENTs.  They both agreed.  She needed her tonsils out.  Ordinarily they wouldn't do it on a child so young, but her history of infections combined with the deterioration of the situation made it necessary.

Coming out of anesthesia was rough on a baby.  She felt off and squirmed and flailed and thrashed.  It was a very helpless feeling trying to hold her while she threw herself back and forth.  A dose of pain reliever and she calmed down.  She refused all clear liquids so they agreed to let her have milk in her bottle, which she drank right away, which was a good sign.

The Pediatric ICU was not prepared for Lily.  It is a place for sick children.  Very sick children.  And Lily on pain meds was not a sick child.  She was an active happy running around child.  

She owned the ward.  She was supposed to be on monitors the entire time, but the cords were too short to allow her any mobility, so they agreed to take her off the machines and hook her up once an hour to check on her.  

They were in a hurry to discharge her.  The nurses tried to talk the Surgeon into releasing her that afternoon. 

He didn't think that was such a good idea.

So overnight we stayed.

We had a bit of a rough night with the blood pressure cuff waking her up every hour on the hour.  She got pain meds every four hours but they wore off after three hours.  So that last hour waiting for her next dose was rough. 

The next day I discovered two things.  

1)  She was getting Lortab, which my Surgeon said he would NOT prescribe her.  He doesn't give narcotics to children under the age of three.  I did not have a problem with her receiving Lortab.  She was on monitors.  She did just fine with the Lortab (probably why she was running around owning the ward).  I tried to talk them into sending me home with a script.  I had one in my hands very briefly, but then they changed their minds and took it away.  Since a side effect of narcotics in a child so young can be death, I was alright with that.

2) She was supposed to be getting alternating doses of Tylenol and Ibuprofen every two hours.  Tylenol at 6 then Motrin at 8 then Tylenol again at 10.  This double layer of pain meds would have prevented that fourth hour of crying where the pain meds had worn off but we couldn't get the next dose yet.  

We were sent home early the next morning and for the first few days it was fine.  She had steriods to reduce swelling and we gave her pain meds every two hours round the clock (even getting up two hours all night long to give meds).  Lily lived on popsicles 

and life was fine.

Until it wasn't.

On day five Lily started to cry.  And she didn't stop for about a week.  

Where she previously drank her pain meds right down, she now spit them on us.  She thrashed and flailed and cried.

The next week was pretty much hell.

We did everything we could to make her comfortable.  Constantly offering her popsicles and sherbet.  Giving her anything and everything to drink (eventually finding success with chocolate milk in her bottle.  I turned into THAT Mom.  I regret nothing).  We force fed her that pain meds resulting in lots of tears, many of them from me.

I wondered why we had done this to our perfectly wonderful baby girl.

But when we laid her down to sleep and she didn't snore we knew we had done something good for our girl, even if it didn't seem good at the moment.

And as her continued to heal and her sassy self slowly came back we knew this had been a good thing.

And when we took her to lunch and she ate five chunks of a hamburger and double fisted the french fries we knew it was going to be alright.

Lily is mostly back to her usual sassy self.  

And this is my favorite thing!

Celebrate With Us!

October is Down Syndrome Awareness Month!

Hooray!

I get to celebrate Lily and that little something extra that makes her extra special every day.  I invite you to celebrate with us this month.

To kick it off I've got the 1025 NDSS Time Square Video.

This was played in Times Square during their annual Buddy Walk.  It isn't a short video, it is 45 minutes.  But if you hang in there (or fast forward) you might spy a certain Queen Bean at the 42 minute 19 second mark.

Tales of the Anemic

The anemia saga continues...

We met with our Hematologist last week and we're delighted to announce that our Queen has iron levels that are *almost* on the extremely low side of normal.

Almost.

Which I think is pretty darn fantastic considering we had only finally found a way to make her actually swallow her iron supplement instead of spitting it all over us the week before.

We tried everything.  Name a juice and we tried it.  It turns out Lily is not a fan of juice.  Any juice.  Although she seemed especially offended by orange juice.  Which is pretty darn funny when you take into account she spent two weeks on an "orange" diet eating only peaches, macaroni and cheese, and cheddar cheese slices.  But even then she refused to eat mandarin oranges so maybe her embargo on orange juice isn't so surprising after all.

So no juice.  Not milk, even flavored milk.  Not in her pedis sure.

It got rough.  Sometimes nights with Lily are hard.  She will wake multiple times and require a bottle and a turn in the rocking chair to get her to go back to sleep.  One night was especially hard.  I was up with her three different times, with three different bottles, but without the cognitive ability to think ahead.  If you give a baby a total of four bottles in a ten hour period you might want to consider changing said child's diaper at some point.  I did not change said diaper.  There is no diaper in the world that could have handled what she unleashed.  It tried valiantly but my darling woke in a puddle.   She smelled faintly of urine.  We changed her.  Tempers are short when exhausted parents try to give her her medicine  allow a girl to practice her spitting skills.  So now we have the faint smell of urine and dirty nickels.  Then she threw up (maybe if she had done that 12 hours earlier we could all have gotten some sleep).  So my sweet sweet princess smelled of urine, dirty nickels, and now vomit.

She travels under the hobo handle Curly Slim.

But finally, after much trial and error we discovered the magic concoction that will make Slim drink her iron supplement and sign for "more."

Pina colada mix, minus the rum of course.

I have a nosey neighbor who likes to look in our windows.  I often wonder what that old woman thinks when she sees me mix a shot of pina colada twice a day to give to the baby.

I am expecting CPS to arrive on my doorstep any day now.