#2 - Things I wish I'd known about Down Syndrome 6 years ago

People with DS look like their parents
I know this is totally logical and seems like a silly thing to not have known.  Before Cate was born, I had this incorrect view that all people with DS look alike.  I'm ashamed because back then if I saw a person with DS or with a disability,  I never noticed that they had adorable dimples, beautiful curls, or were wearing cute shoes.   So I was sad at first thinking Cate wouldn't look like me or my husband.  And you know what Cate, doesn't look a thing like me, but she looks EXACTLY like her daddy. 


Cate & Ric - Buddy Walk 2010

Cate & Ric - Buddy Walk 2011



Cate and Lucy are also obviously sisters since I got left out and Lucy looks exactly like him too.

Cate & Lucy 2010



Cate & Lucy 2011



Having Cate opened my eyes so that I can really see individuals better now.  Of course I'm still a little sad sometimes that strangers may do the same thing I used to and only see the tiny piece of Cate difference.  But I like to think because she is out in our town all the time she is changing some of those perceptions.  I frequently have people say "she looks just like her daddy", "she has such pretty eyes", or just  "she is beautiful".  All of which I know but I still love to hear it from strangers.





#1 - Things I wish I'd known about Down Syndrome 6 years ago

I wished I'd known Cate was way more like other little girls than different.
I think my biggest fear when I was first in the hospital after Cate was diagnosed was that she wouldn't have a fun childhood like mine. I worried she wouldn't never have real friends, those little girls to play dress up with, have tea parties and all that fun stuff I had imagined when I was pregnant.  And although it seems crazy now, I guess at that moment I pictured her as a 5 year old still playing with baby toys and her only friends being other kids who did the same thing.   I also was mourning the lost dream of meeting other moms that I could be friends with like my mother did (she is still very close to people she met through my childhood activities).

It didn't take long to realize that as an infant Cate was no different than any other infant, except she wore a heart monitor to bed.  If anything she was an easier baby - I could take her anywhere, feed her anything, she didn't cry much, loved to cuddle, and slept through the night very early.  As she got to toddlerhood there was a period where my fears came back as she slid behind her peers in major motor skills like walking (she was 22 months) and talking.  As I had feared her main friends outside of daycare were the kids in her DS playgroup.  Was this some terrible thing to be sad about? ABSOLUTELY not, I have met the most amazing women through DS groups and the kids Cate played with were just kids.  They play at the playground while I talk to the other  moms about them and life in general.  These were exactly the play dates I'd imagined even if the discussion subject matter was a little different, things like therapists & specialist.  As for friends - Cate has great friends now as a kindergartener.  A perfect mix of her DS playgroup friends, friends of the family, and friends from her kindergarten class that live in our neighborhood.  And those moms of the kids in the neighborhood are awesome women as well.  They have no idea how special they are, they accepted Cate without question, they invite her to their parties and include both of us in activities.  I read blogs and boards, I know this is not the case for every family but for us the neighborhood has been incredibly accepting.

Now at 6, Cate plays with dolls, dress up clothes, princess stuff, her kitchen, and puzzles – the exact same toys all her friends are playing with, once again she is more like her peers than different.  So now I know that it make take her longer to reach some milestones but she always catches up.  I’ve learned the hard lesson of not comparing her to others and celebrating each milestone, not only hers but also her sister and her friends’ achievements as well – and that makes life so much sweeter than being competitive.
As for tea parties – that is exactly what we did for her 6^th birthday party.  We invited 10 girls for the Sunday before Christmas so I had expected a small turnout but 8 of them came!!!  They made time for Cate in their busy holiday schedules and it meant the world to me.  I wish I’d know back in those early days that I had lots of parties like this one to look forward, instead of worrying myself envisioning a life of solitude for Cate.  The truth is that Cate really is just a little girl who happens to have DS, and she is more alike than different.

The table was set with tea cups, mini cupcakes, and finger sandwiches.



The girls played with Cate's toys as we waited for the group to arrive.



Cate drinking her herbal cherry tea.

All the girls at the table in the hats they decorated.

It took a litte help to break the tea pot pinata!



Prologue - Things I wish I'd known 6 years ago about Down Syndrome

Six years ago today I wrote the email below to my family & friends and started my journey into the world of a special needs child.  In some ways when I read this email now I'm pretty proud of myself, I didn't betray the sadness of lost dreams I was feeling and managed to convey that "everything was going to be OK" which I was also feeling.  It was impossible not to know that when you cuddled that little angel and looked into her intelligent eyes.  But it was a time of such conflicted feelings for me - one minute I was so in love and happy, then the next I was crying because my baby would never have a wedding or some other such thing. 

Sent: Tuesday, December 27, 2005 1:42 PM



Hi everyone –

Sorry this took a long time to get this email out – I know  I promised it earlier but we’ve had a roller coaster of a weekend.

First things first –

 Miss ...Cate – was born at 7:50 am on Thursday 12/22 by c-section.

In case you didn’t know we had to have a c-section since the little rascal never turned head down.  This turned out to be a good thing because she had her cord wrapped loosely around her neck so it turned out to be the safest way for her to come into the world.  Ric was there and actually watched the “birth” part.  He was able to hold her within 5 minutes of her being born.  She was 7 lbs, 6 oz at birth, with brownish hair and dark blue eyes.   I figure she is going to have Ric’s hair and my eyes, although all the nurses think she looks just like Ric!!!  And she is adorable if I do say so myself!!!  I’ve attached a couple of pictures.

Now  for the roller coaster part.  On Friday Cate had to have a blood test because the nurses in the OR had a suspicion that she might have Downs Syndrome.  Drawing the blood turned out to be very difficult and the trauma caused a low  oxygen problem and she had to be taken to the NICU (Neo-natal Intensive Care Unit).  This sounds like a terrible thing but it turned out to be for the best.  While she was in the NICU they did a bunch of tests including an Eco-cardiogram and found out she had a heart defect.  We are very thankful for the turn of events because of the early detection and that she was in a place with the best possible care.  This heart defect is found in 50% of Downs babies.  The heart defect is repairable and she will have surgery to for it around 4 – 6 months of age.  The doctor says is a text book case and the prognosis is very good.  In the mean time it will not affect her every day life except she has to wear a heart monitor for precautionary reasons when she sleeping – this allows the information to be gathered for the doctors and gives us a little piece of mind.  In case you want to look it up the type of Downs she has is Trisomy 21.

Please do not be sad about the Downs.  Ric and I have come to terms with it and there good reason to hope that it is a mild case.  Cate is beautiful, alert, aware, and even strong.  We will have some hurtles in the future but we can overcome them.  So be happy for us and keep Cate in your prayers.

You are welcome to give us a call if you want to come by and see her.  I know  that many of you are worried about calling and waking us up – which I appreciate – so if you want to come call my cell phone (which I turn off or put in another room during my nap time – she can sleep through anything after being in the NICU), leave a message.

Love,

Lisa & Ric

Starting this week, I'm going to post about the 5 thing I was most afraid of and wish I'd known I didn't need to be.  This email is a good prologue to that because it shows how much I didn't know but how much hope I still had for my little girl.  As far as this email goes, the advocate in me cringes a little at my use of the phrase "the Downs", but just like the general population, I had no reason to know then why saying it that way was treating a genetic disorder like a disease - which it is not, Cate is not sick because she has DS.  Also I cringe at the medical inaccuracies - which are my interpretations of what doctors said, like that her "type of Downs" was Trisomy 21.  Trisomy 21 is the medical term for Down Syndrome, meaning a third copy of the 21st chromosome its not a type.  There are a couple variations of Trisomy 21 but they are both very rare and did not apply to Cate.  One is called Mosaic DS and that basically means that not every cell in the body has 3 copies of the gene, only some do.  The other is Translocation DS which means that the extra copy of the 21st gene is actually attached to another chromosome.   The other inaccuracy is that there is no spectrum for DS - you can not have a "mild" case of having 47 chromosomes.  Of course different children have more "mild" medical issues and different severity in development delays areas but there is no way to tell that at birth outside of the obvious serious medical conditions, one of which she actually had. 



Now for some cuteness after that serious talk -

First of a million cuddles with mommy!



Cate's first Christmas in the NICU - the blanket was a gift from a local ladies group and I still use it to decorate and remember the kindness of strangers each Christmas.  The scratches on her chin were self inflicted - she had long sharp nails and gouged her face many times before we got them cut.  I don't remember why she had the arm splint except she did have an IV at first, the circle of tape by her eye was for a monitor of some kind.  We were very lucky to only be in the NICU a short time and went home on 12/28.  During that time time we got to hold her and the great nurses even let my parents & brother/sister-in-law in to see her on Christmas.

Now we get to have FUN at Christmas time.

Surprise Prayers

I'm ashamed to admit it but we don't go to church very often.  We have a lovely church with a great Sunday school program but by the time Sunday morning comes, I just need a day that doesn't require me to get girls ready and rush them out the door.  So I get lazy, but I am promising myself that I’ll do better in 2012.  We do however say a simple grace at dinner most nights and do a bedtime prayer with the girls every night.  Cate usually says our prayer at dinner.  In anticipation of grandma asking her to say grace before Christmas dinner, we really worked on her enunciation of the God is Great prayer and she had it down pretty well.  Then at Christmas Eve dinner at my aunt's house, Aunt Mary asked my cousin Jon to say grace.  Cate piped up that she wanted to do it.  We asked her to do God is Great but instead she starts singing.  I waited for these unintelligible two lines at the end of this particular prayer song but this time she sings as clearly as can be "God we thank you, God we thank you, For our food, For our food, and our many blessing, and our many blessings, Amen, Amen."  Everyone said good job and she was so proud - and so was I.
So as expected before Christmas dinner my mom asks Cate to say her ‘God is Great’ prayer.  I sat there waiting for her to sing instead but after a long pause to make sure everyone is listening Cate starts and once again she surprised me.  She did not say one of the prayers we do together instead she made up her own.  I was shocked, she has never done that before and it was as natural as can be.  She was looking down and speaking quietly so not everyone could hear but as best as we can piece together she said something to the effect of -
"God is great, god is good, thank you god for our food and my family and all of my family coming to my grandma’s house for dinner. Thank you for our food and I love all my family.  Amen"

I have to admit to moist eyes.  I was just trying to teach her a simple prayer but instead she learned to say a truly thankful prayer.   Cate is always the first one to thank me or daddy or grandma for dinner, or a gift, or any kindness and it always comes from her heart so I'm not surprise at her thankfulness but at her grasp of the concept of prayer and her ability to verbalize it with everyone watching.  That is one of the many reasons I am thankful, she always surprises me and teaches me to never underestimate her because she is only five, I mean six (still having trouble believing that, give me another year or so to get used to it) or for any other reason.  My girl is just amazing!
Hope your family had some good surprises this Christmas too!

Leaving Cookies for Santa

Mommy the cookies are all gone!

The girls dancing in Tutus from Santa

The biggest surprise from Santa - a new stage!!!

Happy Birthday Baby

OK - this is my first blog post EVER and its pretty predicable but I hope you'll give me a pass because my baby just turned SIX today.  What is there to say except - "Oh My GOSH - how can she possibly 6 already, wasn't she just born a couple days ago?"
I mean really when did this sweet little baby,

Turn into this beautiful young girl?

(i promise more on the birthday tea party soon)

When I think back to this day 6 years ago it is with such strong but mixed emotions that I can't quite talk about it this moment.  But that is what this blog is for, I want it to be a journal about the past, the present, and our ever changing hopes for the future.  Hopefully someday it will be more than just a chronicle for our family to watch Cate (and Lucy too of course!) grow but it will be a little resource for the moms of little kiddos with Down Syndrome who are wondering what about what the future might look like when they get to kindergarten.

So for now Happy Birthday to my baby who really does make the sun seem brighter than I ever imagined it could shine six years ago. 

Cate's "Birth Minute" gift, she was exactly 6 years old in this picture at 7:50 am

(Lucy was Ric's clock watcher!)