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?

Friday, October 30, 2015

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.  

Tuesday, October 27, 2015


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!

Thursday, October 1, 2015

Celebrate With Us!

October is Down Syndrome Awareness Month!


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.

Monday, August 31, 2015

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.


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.

Monday, August 10, 2015


We've been selected!

"The 2015 NDSS Times Square Video will play in the heart of New York City on the Clear Channel Spectacolor screen in Times Square on September 19, 2015 at 10 am ET."

On a whim I submitted a photo of Lily to the NDSS for consideration for their video.  I did it an hour or two before the deadline (or just after if the deadline was Eastern Standard Time).  I am honored that our picture of Lily will be included with over 400 other pictures on the screen in Time Square as part of the NDSS New York City Buddy Walk.

I love being a part of this opportunity to showcase Down syndrome as something beautiful and ordinary and part of life.  I'm sure this video they are compiling will help promote not just awareness but acceptance of differences.  There is a hashtag that goes around Instagram #morealikethandifferent.  More alike than different.  I hope that showing picture after picture after picture, snapshot after snapshot after snapshot of the lives of individuals with Down syndrome will show they aren't that different after all.

They are people.  With feelings, ideas, hopes and dreams.  They are worthy of dignity and respect and love.  And they are loved.  So very loved by people who hope and dream for their acceptance and safety in this world.

I'm so excited Lily was selected.

I just wish I could remember which picture I submitted.

I'll be sure to link to the video on Youtube when it is avaliable.

Saturday, August 1, 2015

Anemia Woes

Curse The Queen Bean and her unusually well developed spitting skills.

We all smell like money.

Friday, July 31, 2015

She's Money!

Our little Queen is anemic.

So Yay!  We get to add another specialist to our team.

It is totally fun to call the Hematologist and have the recorded message say "Thank you for calling The Children's Hospital Pediatric Oncology Department."  And by fun I mean not fun at all.  It makes your heart stop.  I hung up the phone and double checked the phone number.


I was in the right place.

In addition to working with your run of the mill blood disorders a Pediatric Hematologist also works with blood cancers.

Children with Down syndrome have a higher risk of developing leukemia than the general population.  Readers of my other blog know my Mother died from cancer.  It was breast cancer, but as far as I'm concerned cancer is cancer.  Chemo is hard.  And I live in fear of my baby, my sweet sweet tiny perfect baby having to go through that.  There nothing I can do to prevent it if it is going to happen to her.

If there is a silver lining it is that the same extra special extra chromosome that makes a person with Down syndrome more susceptible to leukemia also gives them greater than average odds at beating leukemia.

Which is all neither here nor there except it gave me a heart attack to hear my Pediatrician had looked at my baby's blood work and referred me to an oncologist masquerading as a hematologist.

Our Hematologist is fantastic.  He went over every result from our blood test explaining all the number to me, and how the numbers interact with one another,  And yes, while he does deal with super scary blood cancers, he also treats your run of the mill blood disorders, like anemia.

And Lily is anemic.

He prescribed some heavy duty iron drop to be given twice a day.

He warned me the iron drops taste bad,  they will turn her hippo teeth black temporarily and they make her poop scary dark colors.


What he didn't tell me was that my baby was going to start smelling like a bag of old nickels.

Tuesday, July 28, 2015

The Hard Times

So we have had a rough week with Lily.

I wasn't kidding when I said that she is an angel unless she is teething.

And she is teething hard right now.  Working on that last "hippo tooth."

She is crabby, and won't eat and won't sleep and is generally making life horrific for everyone in the house.

The not eating is especially bad because she is in feeding therapy, and I spend an obscene amount of time thinking about what to feed her.  Thinking of textures and tastes and nutrition.  Planning meals for Lily.  Spending hours trying to get her to eat.  She is anemic.  And it is dietary induced anemia.  For the first year of life she existed on expressed breast milk.  Then she switched to cow milk.  Neither of which have iron.  So I worry and try and give her roughly eleventy billion opportunities to eat every day instead of just giving her the bottle she really wants.

And she isn't eating.

Because her mouth hurts.

And the not sleeping is especially bad because I do not do well with sleep deprivation.  In college I could stay up cramming the night before a test, ace the test, and then go dancing all night the next night.  But now?  I'm dying.  I'm actively praying for the sweet release of death.   And I'm kinda hoping there isn't an afterlife because I just want the sweet oblivion of nothingness for a bit.  Like a Buddist nirvana afterlife, floating with the energy of the universe for a time.

We did take our Sweet Lily Bean to the pediatrician to be sure it was only teething and not something more serious.

After an thorough examination it was determined to be teething but she threw in a referral to an ENT just for fun because while they weren't infected Lily's tonsils were very very large.  Because what we need is another specialist.  She also suggested we give Lily 5ml of benadryl at bedtime so we ALL can get some sleep.

It didn't help.

I am exhausted.  And last night I discovered that if you turn the new baby monitor all the way down to the lowest setting it doesn't make the cries quiet, it puts the baby monitor on mute.


I slept through the night last night, but from Lily's attitude this morning I'm guessing she had a rough night and she was pretty cranky about it.

So really no blogging.

Too tired to string words into sentences.

Too tired to take pictures.

Teething stinks.

Wednesday, July 22, 2015

Be, Demand & Inspire Change

Do you remember when I mentioned other bloggers with better voices?

This is what I meant.  I love what she has to say.  And the great love with which she says it.  If you have a few minutes please grab a tissue and take the time to watch this video.

Tuesday, July 21, 2015

Rule #3

Lily loves her bathtime!

We have two rules for the tub.

1)  We do not stand in the tub.

2)  We do not poop in the tub.

Lily likes to play fast and loose with both rules.

Tonight bathtime was provided by her oldest sister.

Afterward I found Pork children would like their anonymity preserved, so with the exception of The Queen they will all be referred to by the nicknames given to them on my other blog....anyways...I discovered Pork Chop furiously sitting at the table working on her latest puzzle.

Her entire body language screamed "I'm so angry about this I'm going to hurt someone."

I attempted to slowly back out of the room.  She is a teenage girl and sometimes, for the safety of everyone, it is best not to engage.

But it was too late.

I was spotted.

"YOUR BABY!"  she accused.  "She and I aren't friends.  I'm not talking to her."  She paused, took a deep breath, and then got right to the heart of the matter "Your baby pooped in the tub!"

"No" I said in mock horror that I hoped read as real horror to her ears.  I looked a Lily who smiled back as if to say "It's true, I totally pooped in the tub.  Again."

"She pooped in the tub and when I was fishing it out of the bath water she started handing it to me.  HANDING IT TO ME."

"She was trying to be helpful?"I offered.

But the list of crimes was not complete yet.  I did not fully understand all my poor teenage daughter had been forced to endure.

"So then I cleaned the tub and ran new water and washed her and then SHE POOPED AGAIN.  AGAIN!  Only this time it was a wet poop and she THREW IT AT ME! SHE THREW HER POOP AT ME!"

I'd like to think that at this point in the parenting game I've developed a fairly decent poker face.  You know those moments when you have to discipline your child because their behaviour wasn't socially acceptable and you have to teach them not to be little jerkwads, but in reality you really just want to laugh your butt off because what they did was so unexpected and funny you can't help but laugh?  I'm usually really good at not laughing.

I looked at Lily.

"Did you throw poop at your sister?"

And I swear on all that is holy she gave me her evil laugh.

I meant sternly to tell her "we do not throw poop at your sister."  But I couldn't.  The evil laugh did me in.  I began laughing so hard I couldn't stand.  Her cuteness saved her...again.
We'll add a third rule for bath time tomorrow.

Monday, July 20, 2015

Signing Success

There is debate within the Down syndrome community on the idea of teaching children with Down syndrome sign language.

Generally speaking there are two schools of thought:

1)  Children with Down syndrome will have the desire to communicate as well as the gross/fine motor skills necessary to sign long before they will have the oral motor skills to speak.  So giving them tool to communicate is good idea that can prevent a lot of frustration on the part of the child.


2)  Equipping a child with Down syndrome with a means of communication other than speech will hinder future speech development.  Without the frustration of not being able to communicate they may not feel the push to do the hard work that is developing speech.

This is an over simplification of things, but each side makes valid points.  I think it really boils down to what works for your family.

We have chosen to try to teach Lily sign language.

And for six months I felt like an idiot signing "eat" and "more" as she blankly looked at me and refused to eat.  Over and over I mimed milking a cow as I offered her bottles of milk.  I pulled my hand down my face for sleep every nap and bedtime.

Lily just blinked at me.

Then one day it clicked.

I was in the kitchen and she crawled in making her sleepy whiney noise.  I asked her if it was time to go to sleep.  She brushed her hand down the side of her head.  I told her I would make her a bottle, and I noticed her little hand was clenching and unclenching.

She knew she was going to get milk.

About a week later I was laying on the couch, she cruised over to me, got right in my face, looked me right in the eye, she really made sure she had my full attention, and she signed "eat".

It was so simple, and it was amazing.

Her vocabulary now includes "eat," "sleep," "more," "milk," and her favorite "all done."

Every day we look up new words to use with her as we go about our day.  "Bath," "chocolate," "celery," "popsicle," apple," "good".  All my children are involved with looking up, and using signs with Lily.

Try as we might she refuses to sign "Mom," or "Dad."

The bad thing about child rearing theories is that you can't tell if your theory is yielding good results until the child is fully grown.  I think that is why theories tend to cycle every fifteen years or so.  Dr. Spock, Ferberizing, Attachment Parenting.  It cycles around.  So is this ultimately a good thing?  Or in a few years will I be here lamenting about Lily's unwillingness to talk because it is easier to sign?  Only time will tell.

Until we find out that signing was the worst thing we could have chosen to do I'm gonna be a proud Mama and show of video of Lily at naptime today.

And a little video from dinner.

Her version of more is evolving.  I think it is adorable and so dainty.  She didn't want to sign sleep because she didn't want to go to sleep.

Sunday, July 19, 2015

Teething Woes

And we can cross apple slices off the list of acceptable food.

But we can move celery sticks from the inedible column to the "Best Food Ever" column.

Her need to constantly gnaw on a cold celery stick combined with her general cranky mood and lack of sleep lead me to believe the Queen is finally getting her fourth tooth.

My other children were late teethers, growing their first tooth around nine or ten months.  

The Queen got her first tooth at sixteen months.

I've heard this is normal for a child with Down syndrome.

Annnnnnd she started with her molars. 

Also normal for a child with Down syndrome.

My oldest calls them her "hippo teeth" because you can only see them when she opens her mouth really wide.

Lily usually has a very high tolerance for pain, not complaining about an ear infection until her ear drum has burst, or not letting us know she has strep until her tonsils are so swollen they're touching.

But teething is kicking her butt.

And mine.

Good thing she's cute.

Saturday, July 18, 2015

Picky Picky

My name is Lily

And after seven and a half months of weekly feeding therapy I have mastered the honey bear!

This is kind of a big deal.

And I have all the skills I need for eating, except rotary chewing.  But that is a work in progress.  I can bite, chew, move food laterally with my tongue, and I know how to handle myself if I get a bite that is too big for me to manage.  I can avoid choking.

I can eat.

But only white food.

I like to taste everything.  But I will only eat a measurable quantity of white food.

I eat noodles, and apple slices, and bananas, and yogurt.  But only if it's vanilla yogurt.

And I drink white milk.  In a pinch I will accept chocolate pediasure.

End of edible list.

The inedible list includes strawberries, peaches, watermelon, really all nonwhite fruits, all vegetables, most crackers, and all meat.  And oddly enough I won't eat apple sauce.

Speaking of white things, I've really enjoyed watching my Mum's hair turn white as she worries herself in knots trying to feed me.

Friday, July 17, 2015

Why I Blog

Earlier this week my Dad and my StepMom graciously watched the children so my Husband (i.e. The Greatest) and I could escape for one glorious night with no children.

I can't even remember the last time we spent a night with no children.

We were just a tiny bit excited.

The Greatest knew a guy who arranged for us to stay in a suite on the top floor of a local hotel.

It was amazing.

It has ruined me for all other hotels.

From now on I can only stay on the top floor with an amazing view of the city.

We spent the afternoon exploring the city.  And that evening we found ourselves in the hotel restaurant asking each other 36 Questions to Fall In Love.  Not that we aren't already deeply in love, 17 years and five children would suggest that we at least kind of like each other.  But it was so very interesting to rediscover things we thought we knew about one another, and to see how we've grown and changed together. I highly recommend it.

One of the early, easy, questions queried if you would want to be famous, and if so for what.

I don't want to be famous.

I love my quiet little life.  I might enjoy having access to the monetary rewards that seem to follow infamy, but not the scrutiny that follows the famous.  I just want to live my life quietly, with dignity (people who know me in real life need to take a moment to stop reading and laugh at the word dignity being associated with me, I am not very dignified.  I try.  I fail.  Go ahead and laugh.  I'll forgive you), raising the best little human beings that I can.

But if I were to wake up and find myself famous, to have a voice, and a large audience to speak to, who would listen and really hear what I had to say, I would use it to speak for my daughter.

My youngest little poppet has Trisomy 21.  Better known as Down syndrome.  (Pro tip, Big D, little s)

She is pure joy.

Unless she is teething.

And then she isn't.

I would use my platform to change the world for her.  I want to create a world where she is included, accepted, loved.  A world where the accepted "cure" for Down syndrome isn't abortion.  A world where parents don't fear when they learn they are going to have a child with Down syndrome.

There is no reason to fear.

Having a child with Down syndrome is a lot like having a child.

Because it is having a child.

A child who learns and grows with her own likes and dislikes and personality.

My Husband really is The Greatest and he believes I could do this.  He believes I could singlehandedly change the world.  He encouraged me to start a blog, or write a book or submit articles to The Mighty.  To find my voice.  To share our experiences and the joy that is Miss Lily Bean with the world.  He believes I could make a difference.

Do I think this will make me famous?

Goodness I hope not.

There are many many many many many blogs like this one out there.  Written by better writers.  With better pictures.  With better voices.

But I would like to add my voice to the chorus.

I would like to stand with the others who stand and proudly declare

"I didn't know I wanted a child with Down syndrome until I had one."

We are the parents of the lucky few.

And if I can create just a little more awareness, acceptance, education in the world, then that is a beautiful thing.

Thursday, July 16, 2015


So this is my Husband.

He is ridiculously good looking and pretty much my favorite person in the whole wide world.

These are four of our five urchins

So cute I can hardly bear it.

And this is our Lily

And this is our little corner of the internet where we share our beautiful life.