Wednesday, October 31, 2012

Would I take away the Down Syndrome from Cate? (Day 31 or 31/21)

Phew - the final day of the 31/21 challenge and except for that one late post I'm proud to say I did it!  I have debated what this final post should be about so much I didn't get any of it done ahead of time so forgive me the errors not found in my normal proof reading day.  And although I'll do a current Halloween picture post later this week - I thought I'd add a festive flashback touch to this probably boring post!
2006 - 10 months
It was a question from a little while back on the BC DS message board that finally landed me on this post - "If there were a magic pill that took away the extra chromosome from your child would you use it?".  This theoretical question has been posed on the message board before and on many blogs and people's responses can be very polarized.  I'm not much for theoretical discussion or philosophy but I have often pondered this question.  Truthfully the answer is, I just don't know,  I'm not the person who can say "absolutely" or "never".  The uncertainty lies in this - Cate is a beautiful person but I hate to see her struggle and I hate to think of anyone every putting her down.   As she has grown her issues have changed in severity and I as have grown as a parent, so the answer has become even more less certain instead of more so. 
Today, I know that my child is not a diagnosis.  Cate is not Down Syndrome even though it is a part of her genetic makeup.  She is not the poster child people should look to for inspiration of someone who is overcoming some major disability - her issues aren't any more difficult than so many other children.  All children have challenges - some academic, some with allergies or illness, some with their environments.  Cate is just a kid who has different challenges then most.  Her foundation in life was different, more intense then other kids her age because we couldn't let milestones just happen we had to use therapy to make her stronger and teacher how how to learn.  But today she is a child struggling to learn math and to read in first grade - just like the average kids in her class.  But the question that underlies every thing is could Cate possibly be the same person if she didn't have the struggle? 

When I'm pondering the hypothetical magic pill questions, I'm always drawn back to the lesson my parents taught me - if you have to work for it, it will be more valuable to you.   I know it is true - the simplest example of it being the first car I had to pay half of the total cost with my hard earned life guarding money, it never missed an oil changed and was washed all the time.  I wouldn't have neglected that car if my parents had bought it for me but would I have had so much pride in it - probably not.  Cate's personality is joyful and caring, it probably would be even if she didn't have an extra chromosome but would she be the same determined, aware little girl if she hadn't had to go through two years of PT to learn to walk?  Maybe she would have but I'm pretty sure I would be a totally different parent.  I've said it many times and it is the absolute truth - having Cate made me a better person.  I am more aware of others, more accepting of differences, less concerned with perfection and more concerned with character.

2009 (I was juggling a baby so this is the best shot I got that year!)

I believe Cate has made us a stronger family.  How can you not gain strength when you learn that you have so many people who will sit beside you and feed you for weeks when your baby has a major surgery?  When you learn for a fact that your village will help raise your child willingly and lovingly?  There is strength in being able to lean on other people and that is a lesson we might not have learned without Cate.  She also taught us appreciation of the little things.  As a family we revel in things as small as Cate's writing a personal birthday card because we know all the things it took for her to do that - she had to gain the hand strength to hold the pencil correctly, she had to learn to follow instructions enough to spell out the words, she had to sit still for more than 2 minutes ;-), she had to use her imagination to draw a picture of a cake.  Pretty normal stuff for a 6 years so would we think something that little and awesome if it wasn't for therapy and extra practice?  We'd be the poorer for not realizing the work that goes into growing up.

So today, at this moment I would answer the question - No I would not give Cate a magic pill because I would be to afraid that she wouldn't be the same little girl with the caveat that as she gets older and faces new challenges I can change my mind on that. 

Tuesday, October 30, 2012

Teeth to Toes (Day 30 of 31/21)

Cate and I had a very much good news/bad news kind of day the last 24 hours.

First came a foot evaluation with an orthotist.  When Cate was little her PT recommended shoe inserts to help her stability as she was learning to walk.  The hypotonia (low muscle tone) that affects nearly all children with Down Syndrome not only affects the areas we commonly think of like leg strength and core body strength but also areas like digestion and joint stability which are also hugely dependant on muscles.  Cate has completely flat feet probably because of hypotonia.  When she was little this made it hard to learn to walk because her feet and ankles were not as stable as a typical toddler.  As she grew stronger and we graduated from PT, she grew out of the shoes that had the inserts and I never thought about them again.  She was doing great in gross motor skills and had no problem with balance or stability.  But a couple weeks ago I noticed she was walking on her toes all the time.  As I thought about it I realized she had been doing it for a while just not in a way that was alarming.  It became more and more obvious because her new cowboy boots make more noise when she walks than her summer shoes.  I could hear the scuff sound of her toes followed seconds later by the click of her heel.  When I was talking to the ladies at cheerleading and mentioned this they urged me to get it check out right away.  One of their daughters had to have surgery to deal with a shortened tendon as a result of toe walking for too many years.  So I discussed with the walking with Cate's OT on our next visit and she did a foot evaluation.  What we saw was an obvious turn in of the foot at the arch - her foot was pronated.  Fortunately for me there was an othotist visiting the OT's office on Monday so we made an appointment to have an evaluation.  The good news is that she has complete flexibility in her foot and her problems are correctable.  She definitely has pronated feet so he did molds to make her some orthotics.  Bad new - orthotics, good news they are only a sole insert with a heel cup so they will fit in her regular shoes and probably not even be visible.  Bad news - they are like $200 a foot, good news - our insurance company has a history of paying for this type of item for other patients.  Cate and Lucy were both great at the appointment.  Cate completely cooperated and made it a very successful visit.
Bad news - no cute boots to school, Good news - she can wear them for "nights out"
Then this morning we had to go to the dentist.  I was really worried that Cate had a cavity because I could see a darker spot on the front of the first molar on one side.  I also was afraid she needed a tooth pulled because she is getting an adult front tooth to the left but it is so far back that the baby tooth is hardly even loose.  Added to that there is always a fear that she won't cooperate with the dentist - it wasn't that long ago that she had to be sedated to even have a cleaning.  (see my post called "Look Mom No Cavities" from 4-25-12)  Again turned into a good new/bad news kind of visit.  Most importantly Cate did awesome.  She was full of questions for the hygienist and the dentist about the equipment and details down to "what are the gloves for" but totally cooperative.  They got the exam, cleaning, fluoride treatment and even bite wing x-rays done with no tears at all!!!  Amazing.  The good news - no cavities, bad news - that dark mark is a spot she as worn down from grinding.  Nothing you can do about grinding in a kid - as I well know because I have always done it too.  More good news - don't need to pull the baby tooth yet we can wait another 6 weeks or so and see if it comes out on its own, bad news - crowding is getting worse so we 'll need to start looking possibly having to pull other teeth in a year or two. 

So all in all nothing we can't handle, just new pair of shoe inserts to get used to and a tooth to wiggle.  The rest will happen as it will and as it comes we'll deal.

By the way there is a great give away over on "Everything and Nothing from Essex" - I love these necklaces. (hint, hint, hint hubby or mom)

Monday, October 29, 2012

Reece's Rainbow & Ms Beth (Day 29 of 31/21)

As you can see from the last post, we don't have very much going on right now.  The girls are getting ready for Halloween, Cate has a dentist appointment tomorrow (wish us luck it goes well), and the weather is really turning to fall.  So I wanted to highlight an organization that I can't leave out of a month dedicated to Down Syndrome awareness - Reece's Rainbow.  Here is their mission statement:

The mission of Reece's Rainbow is to rescue orphans with Down syndrome through the gift of adoption, to raise awareness for all of the children who are waiting in 25 countries around the world, and to raise funds as adoption grants that help adoptive families afford the high cost of adopting these beautiful children.

There are still countries in the world where children with Down Syndrome never get to go home with their parents.  They are immediately sent to orphanages called baby houses until in some places where as young as 4 or 5 years old when they are moved to adult mental institutions.  These cultures still view children with DS as unable to learn, embarassments, and burdens.  Their life expectancy once they are moved is so short and although not every facility is as horrible as our imaginations, most of them are underfunded and offer no therapy or education for these kids.  They never get to realize their potential like Cate and her friends do.
Reece's Rainbow was started by Andrea Roberts who is the mother of a 10-year-old boy with Down syndrome, and a passionate advocate for other children around the world.  In 2006, she expanded an existing organization started to help parents upon diagnosis at a major Atlanta hospital to include promoting the international adoption of children with Down syndrome.    They provide a website that details children with DS awaiting adoption internationally and provides grants for the adoptive families since these adoptions can run $40,000 when you include travel costs for multiple visits and weeks of residence in a foreign country.  These grants are funded by people who donate to them in honor of a certain child or to a general fund.  This is the charity that Ric and I give most of our yearly donations too because as often as we discuss it we probably won't be those amazing parents who can provide a forever family for one of these deserving children.  But we can make a difference through Reece's Rainbow, look at what they've accomplished:
In only 5 years, we have found adoptive families for more than 500+ orphaned children with Down syndrome and other special needs around the world. More than $1.5 million in grant funds have been disbursed to make those adoptions possible. I can say with great confidence that if we had a full grant for every child on our website, there would BE no children on our website. There are hundreds of families in the US and Canada who would give their left arm to bring one or more of these children home. The money is the ONLY thing standing in their way. If you have questions or would like to discuss adopting or donating, please do not hesitate to contact me!  
For more information on Reece's Rainbow please visit to learn more about the organization and how to make tax deductible donations. 
There are so many blogging moms out there who raise amazing amounts of money for children on Reece's Rainbow.  I wish I could be that person but right now my heart tears a little every time I go to their site.  I just can't emotionally handle investing in a child that I can't save by myself.  Maybe someday you'll see a child who needs us on this blog but for now I have to remain a donor and not an advocate.  Except today I need to make an exception because there is another reason I wanted to highlight Reece's Rainbow.  Not all of the kids they advocate for have Down Syndrome, some of them have other diseases or disabilities.  This child has found a family and needs help to increase his fund:
Boy, born August 2006
A sweet -faced 5 year-old, Nathaniel is diagnosed with a neuromuscular disease. He dresses himself and is otherwise independent in his daily living. He is not aggressive, is kind to others and cries easily if he doesn’t get what he wants. He needs a family who can work with the unknowns of his medical diagnosis.

He is important to me because Cate played a part in his being found.  From the first post on
  Our journey began when I decided to join one of my former Pre-school students at the Buddy Walk last September. We had great fun being part of Cate's Crusaders. Before the actual walk, I wandered around and grabbed information from several tables. When I got home and opened one of the pamphlets, I was intrigued. It was a pamphlet from Reece's Rainbow. I turned on my computer and visited their site. Well, that was it I was hooked. I knew that I was being called. This is what I am supposed to do at this point and time in my life

His forever mom is Cate's special needs pre-K teacher. You've heard me talk about Ms Beth many, many times on this blog. She sat by me and acted as Cate's advocate during the uncertainty when Cate started kindergarten. She and her daughter have attended the Buddy Walk as part of Cate's Crusaders. Ms. Beth has answered a million emails, calls, and visits when I have a question or need some advice.

I can't do enough to sing her praises as a teacher and an advocate.  But I can try to help her increase Nathaniel's grant.   Ms. Beth has experience with MS and is already devoted to this child in Asia she hasn't even met yet.  Please visit Reece's Rainbow and donate to this very worthy cause or find another child you'd like to sponsor.

Thank you!

even the Fortune Cookie knows (Day 28 of 31/21)

Even Cate's fortune cookies know she has a sparkling personality that makes her the center of attention everywhere she goes.

Saturday, October 27, 2012

Zoo Pic (Day 27 of 31/21)

Last weekend while daddy was off at a guys weekend, the girls and I made a trip to the zoo.  They LOVE the zoo and this weekend was extra fun because it was the zoo's halloween event.  They had lots of decorations and little trick or treat stations set up all around the zoo.  The day was beautiful and the animals out at active so it was a perfect day at the zoo.
Sweet Sisters!

Zookeeper Cate giving her panda speech!

Lucy isn't a fan of touching animals but Cate loves the petting zoo and has to give each animal a little attention.

a first for us - the tigers were very active and Cate was fascinated

the tiger was playing with his ball in the water right in front of Cate

We love Boo at the Zoo!

Friday, October 26, 2012

Just like any 6 year old (Day 26 of 31/21)

This post idea was completely stolen from the 'Everything and Nothing from Essex' post yesterday.  I had seen some pieces of this video before and been meaning to do a post for it but it took Deanna to finally inspire me to do one today.  So please take a look this video - do these adults look like they have anything other than fulfilling and joyful lives?  We may say we wish for kids that become doctors or MBAs but isn't what we really wish for is that our kids are successful because they live lives that they enjoy and ones where they feel valuable?  These adults with DS are huge successes in my mind.

Cate shows me all the time she is "more alike than different".  So I'd like to think that her version of this for a 6 years old is something like this:

  I want to be a princess when I grow up.

  I want to be like my mommy.

I am totally a daddy's girl. 

  I love my cat.
  I love my little sister.

My sister still drives me crazy.
 I love the ocean.
  I love to play outside.
I don't like doing homework every night. 

 I am on a cheerleadering squad.
  I am on a swim team.

I am responsible for chores. 
 Sometimes I am grumpy.

  Mostly I love to laugh.
My family loves me.

Sound like any 6 year olds you know?


Thursday, October 25, 2012

Homecoming parade (Day 25 of 31/21)

Cate had another fun experience last Friday.  Her and I walked in the high school homecoming parade with her elementary school float.  We had worked on the float the previous weekend and couldn't pass up a chance to practice our princess waves.  Cate walked the entire 1 mile parade route except for a tiny carry when the float picked up speed and I need to catch us up.  She had a blast and I think gave every person on our side of the road a personal smile and wave.  As one of the teachers at her school said to me yesterday "Cate is such a social butterfly". 

that is Lucy hiding under the jacket on Grandpa's lap, she was anticipating the noise I hear

our assigned theme was olympic soccer, hence the soccer shirt and shin gards!

Wednesday, October 24, 2012

Ah Lucy (Day 24 or 31/21)

So yesterday Ric picked up Lucy from school and had a very interesting conversation - here is the my imagined version of the story he told me last night:

... a discussion in the car about family turns into ....
Lucy:  Daddy is Uncle Tim a girl or a boy?
Ric:  A boy
Lucy:  Does Uncle Tim have a big bottom or a little bottom?  <Tiny bit of explanation here - the root of the question is a conversation her and I had about her using the child toilet seat that is built into the lid of our toilet.  She didn't want to use it because it was for "babies" and I had to convince her that it wasn't for babies just people with little bottoms like her because everyone has different sizes.  I know the things we say to our kids is unimaginable before you are parents.  Now why she thought of that question a month later in relation to Uncle Tim I have no idea.>
Ric:  uhhh, a big bottom I guess <he wasn't there for the above mentioned conversation>
Lucy:  Daddy does God have a big bottom?
Ric:  mmm, I don't know Lucy
Lucy:  I guess we should go up to heaven and check his pants.
Ric:  .... no response because he was trying very hard not to laugh so hard he would crashed the car

You gotta love kids!!!

Tuesday, October 23, 2012

Chores (Day 23 of 31/21)

I think most parents agree that chores are important for their kids.  It teaches responsibility and shows that it take a whole family to make a house work smoothly.  Plus sometimes it just plain helps get things done - of course when the kids are only 6 and 3 sometimes it make things take longer too.  I've never believed anything but that Cate should have the same responsiblities as other kids until that proves to be stressful for her.  She proves to us again and again that only she knows what she can do - if you try to assume she will most likely prove you wrong.

I grew up doing chores and so will my girls.  Mostly my parents assigned them by what needed done although of course we had tasks that were mostly "ours" in that routine.  We never had chore charts or allowance tied to that work - it was just expected and even though we might not have done it totally willingly, we also knew eventually we had to do it regardless of how much we complained.  My kids are at the point they actually want to help - well at least Lucy is, Cate doesn't want to leave what she is doing to help but once she starts she is willing.  I started a couple months ago with a chore chart.  They both were responsible for putting their bags on the hooks in the kitchen, their shoes in the basket by the door, feeding the cat (Cate - water, Lucy - food), and emptying the dishwasher.  Well the chore charts themselves have actually be stuffed in the junk basket but to some extent the chores or the lessons attached are still alive.  The girls automatically put their bags on the hooks, most of the time without me asking.  Shoes are starting to make their way to the basket about 50% of the time and it only takes a reminder to get them there the rest of the time.  (Of course it might help if mommy could remember this one as well.)  Surprisingly the dishwasher has been a task that has actually be consistent and well received.  I took a big chance in September and rearranged my whole kitchen to support this task ("Yes, I'm pretty sure I had lost my mind" post 9/17/12), so that the dinnerware was on a low shelf allowing the girls to reach it.  Well amazingly a month later that is still a good plan. 


So after a month, now all I have to do is remove sharp knives, put away pans and glasses and leave the rest to them.  They need very little help and are even starting to remember where the odd items go.  Finally one plan that is working and actually helps out!!!  Now if I could just get them to clean up that disastrous counter you see in the background of these pictures, maybe I could actually sit down before they go to bed.

Monday, October 22, 2012

1st Grade Card! (Day 22 of 31/21)

So right before the sick day Cate got her first "real" report card.  I pretty much immediately sent send the teacher an email asking if this was on the regular curriculum or a modified curriculum - she said the grades are based on the regular 1st grad curriculum with work modifications such has a lesser # of spelling words per week, 1 on 1 testing, and some writing adaptations for longer assignments.  WOW!  I'm really happy with these grades!

In case you have trouble reading my horrible photo - she got "S - Satisfactory" scores in all her specials (Art, Music, Drama, Dance, PE/Health).  She got a 92% - A in Language Arts, an 82% - B in Reading, and an 80% - B in Spelling, and an 81% - B in Math.  Three Bs and one A - I'll take that any day!  My girl does work hard to keep up and she is succeeding with the help of an awesome teacher and great para-pro.  Thanks to her amazing team!

Sunday, October 21, 2012

Video Blast from the Past (Day 21 of 31/21)

I finally have an answer to my frustrating issue of never writing a blog on the same computer as the pictures I want to use!  My excellent hubby bought me a 64GB flash drive so I downloaded everything from the basement computer that I don't like to write on because that computer hates me but it has 5.5 years of pictures on it that sometimes I need.  So while I was waiting for my many picture locations to upload to the flash (which took about 4 hours), I was clicking around at pictures from when Cate was a baby and making a lot of "awww" and "oh my gosh" noise when I hit upon a folder of untitled videos.  I opened a few at random and found one that reminded me just how amazingly far Cate's speech has come.  This video was taken within a month or two of when she turned three years old.  I'm absolutely sure of that even though the date doesn't seem to have been recorded because one, she got that Candy Land game from her Uncle Lane & Aunt Brandie for Christmas so it is after December 2008 and two I am hugely pregnant so it was before March 2009.
You are going to love the adorable hair, sweet little round face and smile in this one - promise!
It isn't hard to figure out how this little girl started capturing hearts!
(a reminder from an email version you need to click on the actual blog but I swear it will be worth the extra clicks!)

It brought back crazy memories of Cate's speech back then or lack of it.  She made a lot of sounds but very few words, she mostly communicated in signs - which she doesn't here because we never taught her color signs - hand motions, lots of pointing, and facial expression.  You can see how smart she was because she got the game and the concept of matching here, she just doesn't have the words.  She says "K" a few times and you'll here her version of "cheese" at one point when she looks at Ric with the camera but other that that the only real word is "go".  Crazy to think that 3.5 yrs ago she hardly talked at all, now she hardly every stops!  I tell other women on the BC DS board that all the time as they worry their children are so late talking but truthfully I'd let myself really forget how far behind Cate really was when she turned three.  I mean Lucy at that age could say hundreds of words, heck today she she was making up a song for Cate in the car that went "I love Cate, everybody loves Cate but Cate doesn't like bears, Cate doesn't like bears and she doesn't like coyotes either".  Ric asked her if she knew what a coyote was and Lucy said - "its like a wolf daddy".  At 3.5, Cate didn't have words for any animals much less the ability to make up songs on the fly.  But of course all that matters is she does now!  Her responding song started as an "I Love Lucy too" song and abruptly changed to a "trees have leave that fall" song, then to the months of the year song.  Our journey is so amazing and it is good to be reminded of how far we've come sometimes!  

Saturday, October 20, 2012

Princess Outing

Just got my camera downloaded so here are the picture of last weekends excursion to the Disney Princesses on Ice show!  The girls had a blast dressing up and seeing the fun show!
Cate is Ariel and Lucy is the new Brave princess Merida.
Ready to do - Lucy held her dress like that every time she was near stairs.

my princesses

Friday, October 19, 2012

Green Dress Pics (Day 19 or 31/21)

So my week is better than my melt down the other day but still running crazy.  Last night Cate didn't sleep much because she keep coughing hard enough to cause her to throw up a little a couple times.  I'd swear it is only drainage because she has had an awful runny nose for weeks but who knows.  Ric was an angel and slept in her bed practically all night in order to rush her to the bathroom when the coughing started.  It is weird because other than a little whinny she seem fine until these random coughing fits.  So no school today for her but my mom thankfully kept her so I could work.  Then at work while it was still dark out I get an email that there is a child in Lucy's class with head lice - AHHHHHH.  I've been dreading the day I see one of these notices since a friend had an actual infestation in her house last year.  I ran home to check Lucy out and everything seems fine but I think I'll be itching every day I think about the possibility for the next week.  So all in all I missed a bit of work I couldn't afford to so you get the short end of the stick.  The best I have for you this post is pictures of the adorable outfit I mentioned in the "glance" post.  Cate in her new green uniform dress with the adorable flowered knee socks and mary janes (the bow was long gone by the time I got her home). 

 I asked Cate to model and she ran up to the fireplace mantle to get a good spot!  Don't know what is going on with the shadows sorry!
Have a good weekend!