Monday, November 16, 2015

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.


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.


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?

Saturday, November 14, 2015

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?