A favorite blog recommendation (Day 18 of 31/21)

I am a blog addict.  OK well to specify, I am a DS momma blog addict.  Everyday at lunch time or when I take a quick break at work, I eagerly look at my Google Dashboard of blogs hoping for new posts from my favorites.  Some of them are moms of children with DS that are Cate's age and I love to read what they are doing at school or how their moms are handling a challenge, some of moms of babies and I love to see the adorable pictures so I can think back to Cate as a baby, a couple are moms of older girls so I can get a glimpse into possible future tips or issues.  But there is one blog that I go to as soon as I notice a new post for a totally different reason, Everything and nothing from Essex.

It actually has very little to do with the fact her little girl has Down Syndrome and everything to do with the fact that she cracks me up.  Her posts are sarcastic, real, and insightful - by her own description they are "snarky".  One day her post might be about an embarrassing mommy situation I can laugh with her only because I relate to it, the next it might be a insight into her views of an issue related to having a special needs child.  A perfect example of the first type "I've had enough" was written a couple days before my mommy disaster post so it was very topical for me! An example of the second type was from Oct 17called "Letting Go" which reminded me so much of Cate and made me realize I do the same thing, learn a lesson about Cate then proceed to ignore her signs that I'm doing something in the wrong way.  I know you probably can't click on this link above given the copy write restrictions I've imposed but please go to http://www.deannajsmith.com/ to check out this hilarious blog.  I hope you enjoy it as much as I have!

More from the fall party (Day 17 of 31/21)

So enough of my little pity party yesterday, as expected all is well today but I'm swamped because of the missed work time from all my running around so I'm going to settle for a post of all pictures.  You saw the best picture the other day in my "Shhh" post - it may be the best picture I've ever taken - but there are a few more that are worth sharing.  Enjoy!

 

 

Just a Glance (Day 16 of 31/21)

I've been hanging on by a thread for the last 18 hours.  Seriously on the edge of losing it - actually going over the edge of losing it I guess.  It all started out great, I picked the girls up from school and then actually remember to pick up Cate's prescription refill.  On our way home we passed a favorite playground we haven't been too in a while so I let the girls to persuade me to stop.  I thought this was a great plan because I even had my Kindle with me.  I'd get to read a little and the girls would be playing in the beautiful weather.  Except after every paragraph I keep hearing "mommy, mommy, MOMMY".  Lucy is stuck on the ladder, Cate wants me to push her on the swings, Cate is stuck on a ladder, Lucy wants me to push her on the swings, Lucy is stuck on a ladder ... get the picture.  I was just getting so frustrated as my plan for a few minutes to relax disintegrated.  But the girls were having fun so I tried to adjust my attitude and enjoy the sunshine and doing funny kisses while pushing both girls at the same time.  It almost worked, until it was time to go home.  Neither one would listen.  Lucy ran and then climbed to the top of a three story slide, Cate disappeared into a tunnel.  After many threats that changed into a polite version of yelling.  I had both of them by the arms dragging them to the car.  Cate finally starts walking on her own then decides she has to go potty and runs towards a very gross port-a-potty.  Forget polite, now I'm yelling at her to stop as she opens the door and touches the disgusting inside.  Finally both girls are in the car (potty forgotten, hands santitized and it was two hours before she actually needed to go) and they whinnied/cried over nothing all the way home.  Fortunately homework went great, that would be the only thing that did.  I had a short temper all night which I won't scare you with except to say it ended in me staying up for hours cleaning because I was too worked up to sleep and need to find some order in the chaos of my house.  To top off my night there had been a message that one of the girls had an ENT appointment at 8:30 this morning. I assumed it was Cate since she goes quarterly and Lucy hadn't been for 8 months after her last good appointment. I could hardly sleep trying to figure out how I was going to manage it because Cate's class was going to a local theater to see "The Wizard of OZ" as a field trip and the calender listed it as 9 - 1:00 which I knew was generous because the show is an hour and the theater about 5 minutes from the school. So what time did it really start? What if we showed up the ENT right when they opened and tried to convince them to take us early then I could drop her right at the theater. Not a gret idea because she really needs the structure from school when it comes to trips like this but it might just work since the cancellation fee is $50 at that office.

a shot from a fall party but it portrays how I felt last night

Now you'd think new day, new start the next morning right? Nope, not for this pity party.  I was half an hour late for work because I got Cate dressed and worried over if we'd make it back in time for her field trip today.  I brought her to the office with me, got started on some time sensitive work and thought I finally was back in control.  Until the reminder popped up on my calender - "Lucy - ENT appointment".  I really almost gave up right then, the thread I was hanging by started to seriously unravel.  So I worked for an hour, took Cate to school, picked up Lucy, took her to the ENT appointment which turned out to be her last one - her ears are totally clear 8 months after her tubes fell out so she has been released for the ENT.  Things are looking up now right?  Not quite, as I go to drop Lucy off at school I notice I don't have her bag.  Not good - it has her lunch in it so she can't be without it.  So after dropping her off I had to go back home to get the bag, then back to school to dropping it off before going back to work.  I really thought that thread was about to break.  I actually sat in my car with my head on the steering wheel waiting for the dam of threatening tears to explode as it snapped.  But as the car blocking me in the driveway moved so did I and and you know what I saw?  Lucy's class was on the playground and she was jumping off a balance beam laughing.  She looks so pure and was having so much fun that my thread started to repair itself.  I even got lucky because she didn't see me.  Then as I'm waiting at a stop light I inched up to see if I could see the buses coming to the theater around the corner for Cate's field trip not really expecting it to be there.  But I was blessed with a glance at my beautiful girl in her adorable green polo dress, flowered knee socks, Mary Janes and a bright white bow getting off the bus and smiling up at her para-pro so excited about her field trip.  That one glance repaired the rest of my thread and soothed my soul.  I got back to work with a much better attitude - which was a good thing because I'm not sure how long it will be before I live down bring the wrong kid for an appointment.   I wish I had a picture of Cate's adorable new outfit but I wasn't that lucky today.

I really hope I can hang on to those images all day, so I'm sure by the time you read this all will be well and tomorrow will be a post full of happy fall pictures like I had intended for today.  Here is to the smiles that make our days better - hope you get to see one today too!  (And to the mini frosty I'm about to eat for lunch with my unhealthy but so yummy spicy chicken sandwhich because just food and chocolate are required on a day like today.)

The most frustrating thing about Down Syndrome (Day 15 of 31/21)

I think the most frustrating thing about have a child with Down Syndrome is the inability to convince people not in the DS community how incredible it is to watch Cate grow up.  I am pretty isolated in reality - our community accepts Cate, her school loves her, my family adores her, and our friends embrace her.  We have never had anyone say anything terrible to our faces.  I tend to read good things for the most part on the DS momma blogs and the Baby Center DS board, and most really bad stories are second hand so easy to sympathize without actually having to experience.

But every once in a while I read something out there that shakes me out of my perfect world.  I could list plenty of links to articles or comments on articles where people have said horrible things.  There are the articles on Materni21 - a prenatal test that some says will cause the population of people with DS to significantly decrease if not be eliminated eventually.  I don't believe that elimination is likely but to read the comments of doctors and professionals not to mention the general public about how great the ability to more easily abort a child they perceive as imperfect is makes my heart ache.  Then there is this journalist in Europe, Samantha Brick, who not too long ago after documenting her frustrating infertility issues actually said in a televised interview that she will abort if the child has DS.  Really - this baby she wanted enough to go through that type of medical procedure and major expense, she wouldn't want if there was an extra chromosome?  Of course there were comments from people in the DS community telling her how wrong she was and people on the flip side telling her its is her choice and they understand.  The reason that particular story hangs with me after months is that she said that she knew herself and she couldn't handle a child with special needs.  No one can know that because it is impossible from a prenatal test to know what your child's issues would be - just like a child with typical chromosomes can have stressful medical conditions that don't show on any test, a child with DS might have very few.  That is a common reason people give in this situation and although I think its so wrong, I can at least understand where that person is coming from BUT here is what Samantha Brick proceeded to say that after that:

"I actually think it would be selfish to HAVE that baby because of the impact on the local health services, the cost of raising that child and the support it would need.' 
and
'My family and I have between us worked with hundreds of people with Downs Syndrome. Let's stop 'Disneyfying' this genetic condition and ensure families, and potential parents, can debate and discuss and have the full unbiased facts of exactly what they're getting into.'

That is what is the most frustrating thing about DS - there is no way I can convince that women or the hundreds of people who comment on how "they couldn't handle it" exactly how perfect my life is now.   I can tell them how amazing Cate is, I can blog about our normal life and I can advocate for Cate in public but I can't change minds of "those" people. 

Cate is the best thing that ever happened to me without question.  I love Lucy just as much as Cate - she is also my daughter and deserves every bit of love and attention I can give her but it is not the same for me.  Cate changed me in ways I cannot really describe appropriately.  She opened my eyes to the world, she opened my heart in amazing ways.  It is frustrating to not be able to touch people who still have their eyes closed to the gift disability can actually be to the people who chose to learn from it.  Because it is in so many ways it has taught me to appreciate life and determination in new ways, it has made me value differences, celebrate the smallest victories and to not put so much pressure on being "perfect". 

Is disability hard?  Is our life more difficult in some ways because of Cate?  Honestly, Yes.  But it isn't hard in the ways you think, yes it takes more planning, yes it takes money but you know that is true for a great many typical children as well.  Lucy is that perfect example.  She is dairy and egg allergic so we have to plan every meal, every snack she has in and outside our home.  We carry an epipen and emergency meds everywhere, if we go to a birthday party we take our own cupcake or ice cream.  Her milk & yogurt cost double or more what ours do.  Does that make our lives unbearable?  Of course not, it is our routine, something we hardly think about as outside the norm.  Cate's effect on our life is so similar, I drive her to therapy, I have constant contact with her teachers and a long roster of specialist but still Down Syndrome isn't that much a part of our everyday life.  Cate's personality on the other hand is a huge part of my life - the best part.  I couldn't "disneyfy" the positive effect she has had on me because there are not adjectives great enough to describe it. 

I know will have to live with the frustration that I just can't convince everyone no matter how hard I try.  It doesn't mean I'm going to stop trying because how could you not shout it from the mountain tops if you were blessed to see that smile everyday?

Family Movie Night (Day 14 of 31/21)

We finally had our first family movie night!  The girls loved it - OK we did too.  We made our own little pizza's using the amazing Publix Deli pizza dough and rented "The Lorax".  At first the girls rebelled a little against getting a bath while it was so early but they gave in to the extra play time in the tub.  The biggest hit of the event was the girls getting to eat in the TV room - this is a favorite treat of theirs.  We watched the movie - a first time run for all of us - and they loved it.  It probably isn't one we'll add to the collection but  the message is good and the girls seemed to get it.  And to top off the night we made a tray of dairy free brownies (I just found a boxed version that has no dairy or egg ingredients then substituted applesauce for the egg add-in ingredient - a little gooey but yummy none the less) and ate them with ice cream.  I know this is a tradition that many family's have and it definitely one we will do again soon.

My Brother (Day 13 of 31/21)

I am so lucky - I might have mentioned that once or twice or 100 times - to have such a supportive family.  My family probably shed tears when Cate was born just like I did but they never showed me.  They have never cared how many chromosomes she was born with and have not been anything but over the top in love with her from day one.  My brother is 3 years younger than me and we had a typical sibling relations I think.  We played together, we fought each other, we kept each others secrets and told on each other just as often.  After I went away to college we never spent more than a long visit together and he is not a phone guy but we managed to stay close. 

Then he moved to Florida and the visits got shorter and farther between but he was here the day Cate was born and he was here the day Lucy was born too.  He is the perfect uncle.  He talks to the girls on Facetime when he is away and spoils them rotten when he is in town.  Plus he gave them an equally awesome Aunt! 

They get more excited about seeing Uncle Lane and Aunt Brandie than just about anyone.  I know I could trust them to take care my girls like their own daughters if tragedy ever struck.  We are so lucky to have so many relatives that we could trust with our kids - I know not everyone has that. i couldn't have guessed what an awesome uncle my brother would become but I think that Cate's birth story is probably part of the reason.  I don't think anyone could have gone though those first days with us, in the room, without bonding to more firmly to that baby.  You couldn't help but look at tiny Cate in that NICU on Christmas morning without pledging your love to the sweetness in her eyes.  (We were also lucky a NICU nurse took pity on us and let them see her on Christmas day.) 

Today is my brother's birthday so today we'll celebrate the best uncle in the world!

 Happy Birthday Lane!!!

A great hand holder even if he has to bend down to reach

He is pretty proud of getting these girls to be silly!

Lane has probably put together more toys and undone more of the awful zip tie packing then Ric & I put together!

My adventurous daughter - (Day 12 of 31/21)

Who knew?  I'm guessing if you'd asked me 7 years ago if a person with Down Syndrome could be adventurous I'd have said I doubted it.  I was an idiot.  I needed Cate to open my eyes and she keeps doing it over and over.  She amazes me even more because I know sometimes it isn't easy for her to be adventurous.  It is harder to for her to climb those slippery bouncy slide ladders but she does it.  She wasn't always adventurous in her current fashion but when she was younger the barrier to her being adventurous was noise and crowds more than fear of the unknown.  She will still shy away from an adventure if there are a ton of kids or loud music but more and more she is willing to try anything.  I think that this will be easier to demonstrate than describe - so take a look at what Cate did last weekend at just one party!

We weren't allowed to do anything else until she'd ridden a pony.  Of course I'm ready to take her picture on the cute pony and she immediately heads to the donkey!

Yes that is Cate getting on a camel.  She was the first one at the party to try it out and she came back for more later!

seriously look at how big that thing is?

She smiled like crazy on this ride!

a high five from the handler!

Pointy horns - who cares?  If its an animal Cate will love it.

That little speck up there is Cate - she climbed it herself but needed me to help her go down the first time, and let me tell you I get it, it was crazy looking down that slide!  After that though she was doing it herself.

this time she picked the pretty pony - we did this about 5 times to try each one

YEE HAW

Have a great weekend everybody!  Hope you have a fun adventure too!