A shout-out to my awesome parents, aka MomMom & PopPop

All too often we take people for granted, and I have been guilty of this also.  Loved ones who are always there through thick and thin, those who are our biggest cheerleaders when we really need one.  I saw some major pompoms cheering for us today, and the funny thing is- I don't think they even realized how much.

Today was my dad's last day of work- Congrats, Dad, on your retirement!!  The company held a small retirement party, and I brought Evan along with me since I didn't have a sitter; the big kids worked away at school.  Evan and I didn't even get to the front doors of the building before the cooing over him began. ;)  We went in and found a seat, and as Evan munched quietly on Cheerios, Dad's co-workers began speaking about his dedication, hard work, and enthusiasm.  None of what they said came as any surprise to me.  I was thrilled that they were able to see this in my dad since I have seen these qualities in him my entire life.  But I did learn something more about Dad today- his pride in Evan.  

After the speeches were over and people made their way over to the cake table, several co-workers, one by one, made their way over to me to express how proud my father was of Evan as well as the other two kids (most emphasis on the cutie patootie in my arms).  They went on about how proud Dad was last year when Evan was born, showing pictures etc. and I had the warmest feeling come over me.  One woman made a bee line over to me as soon as my father had finished speaking, SO anxious to introduce herself to me. As I began introducing myself to her, she interrupted me- "Oh yes, I know you are Amy!  I've read your wonderful blog..."  I was beside myself with excitement!!  Dad not only shared his beautiful grandchildren, but also my blog where I tend to pour my heart and soul.  Not one person mentioned anything about Down syndrome- they were simply excited to meet us after seeing Evan's adorable pictures and hearing the pride and joy from my father.

Evan didn't last long in my lap before my mother snagged him away- she is always quick to snatch him up and show him off to anyone and everyone she can.  Any family gathering or party where there is opportunity to mingle- that's Mom's cue to grab the baby and BRAG.  Of course this is typical grandma behavior and she did the same with the other two when they were babies as well... but just seeing that pride she has in Evan warms my heart like nothing else.  

I will never forget laying in my hospital bed while Evan was down in the Special Care nursery shortly after his birth.... I bawled, mourning the loss of a child I thought I was having, and I worried about how the family would react to a child with Down syndrome.  We've never had a member of the family with a disability before, and I had no idea if they had ever even interacted with someone with DS in the past.  

My mom was sitting right beside me while I cried, the only person I let see me cry through this process of mourning and acceptance, and I will never forget how calming and reassuring she was.  She accepted Evan as her beloved grandchild from the very start, and was extremely positive and supportive when I needed to hear those comforting words the most.  She spoke of my father and shared their conversation with me about when she told him the news of Evan's DS.  Apparently, many years ago, my father used to work with a man who had DS and Dad had nothing but great things to say about this man.... he was upbeat, a hard worker, and a pleasure to work with.  I had never heard about this former co-worker before and had absolutely no idea my father ever worked with anyone with DS.  Mom went on telling me about when she shared the news of Evan's DS with my brother, and he too had a positive story about going to a customer's house for a service call- the customers were a married couple, both having DS.  Again, lots of compliments about the couple. As I saw how positive and accepting my family was, I knew everything was going to be fine.  Evan was well-loved already, and he was barely a day old.

I've been reading A Special Kind of Hero:  Chris Burke's Own Story and am about halfway through- I highly recommend it, by the way- it's an excellent read.  Learning about the trials and tribulations his parents went through while raising a child with DS back in the 60's and 70's really makes me grateful for the progress our society has made regarding special education and the treatment of people with disabilities.  I wish I could write the Burke's a letter to not only express my gratitude for all their hard work they put into changing people's attitudes as well as sharing their story... but to also share my own story and let them know they truly made a difference.  

Mom and Dad- I love you SO much.  I don't tell you nearly as often as I should.  I'm so proud to call you my parents, and so thankful my children have such loving and accepting grandparents in you.  Thank you for all that you are and all that you do, and for being two of Evan's biggest cheerleaders! 

Evan's Baptism

People-First Language

I have been wanting to write a post on this subject for quite some time, but had been unsure how to approach it.  Just yesterday I read one of the blogs I follow and was truly inspired.  I'll get back to that blog in just a moment.  While people-first language is SO important to those with disabilities, I've found it difficult to explain exactly why without portraying myself as being overly sensitive or trying to be politically correct to the extreme... nor do I want to sound preach-y.  As I read and reread what I wrote, I'm worried I may still come across as preach-y and this is not my intention.

So, what IS people-first language, anyway??

Honestly, I'd never heard of this concept until I joined the Down syndrome community, and when I did, it was truly an "Aha!" moment.  While the concept is so simple and doesn't seem like much of a big deal to anyone on the outside, it means EVERYTHING to those on the inside.  People-first language simply means addressing the person first before the disability.

Instead of saying "downs kids" or "she IS Downs," make an effort to say, "kids with Down syndrome" or "she HAS Downs."  Sure, it takes a couple extra words, but it will mean the WORLD to people in the DS community, or any other community whether it be those with autism or physical disabilities among others.

Why is this such a big deal??  Does it REALLY matter how you say it by putting the words in the opposite order?  Simply put- YES.  It IS a big deal, and it WILL go noticed.  I notice every single time.

Let's go back to the blog I mentioned- you may remember this blog- A Perfect Lily.   Patti is the one who successfully organized the iPad Giveaway for Peter and the other cherubs on Reece's Rainbow.  Her blog post yesterday totally hit home, and her words expressed EXACTLY how I feel.  Patti writes:

Before I had you, I never thought twice about saying "Down syndrome child" or "Downs baby". Now I find myself a little defensive when I hear or read those words..I never really "got" people-first language until I had you. I am not a huge fan of political correctness- I think if we continue to ban certain words, people will just find new distasteful words to replace them. Changing words isn't as effective as changing hearts. Having said that- words do make me, as a parent, feel a certain way. Hearing someone refer to you as "a Down syndrome child" honestly does- right or wrong- make me feel like people think of you as less than human. As in- there are baby girls, and baby boys...and then there are "Downs babies." Like you are in a category all by yourself, somehow...sub-human.  When in reality, you are a beautiful, healthy, and adored baby girl..who happens to have Down syndrome. Which is why I changed the way I say things after I had you- not because I am such a big fan of political correctness, but because of how I personally feel when I read or hear those words. I would not say "so-and-so is a cleft-palate child"...he is a child who has a cleft palate. Just as you are not a Down syndrome baby. You are a baby... who has Down syndrome.


Thank you SO much, Patti, for allowing me to quote you here, and even more so for expressing how so many of us parents feel who didn't know quite how to say it without stepping on toes.  I know people don't always mean to talk down to my child this way nor do they believe they are being disrespectful, and I've never considered them doing so.  Yet it still makes me cringe when I hear it, whether it comes from a medical professional or a neighbor down the street.  We don't call kids with cancer- cancer kids, because cancer doesn't define who they ARE.  They just happen to be fighting cancer.  My Evan is SO much more than an extra chromosome- while that chromosome may make certain tasks a bit more challenging, it certainly doesn't define who he is.  It doesn't begin to address his feistiness, his adorable giggles, his orneriness.... obviously I could go on and on! ;)   Most importantly, my child is an individual.  He is unique in his own ways, just as any of us carrying only 46 chromosomes. 

T-R-O-U-B-L-E

trou·ble [truhb-uhl] noun.  Also known as ornery.  See photo below:

Trouble can be displayed in many forms, the above being one of Evan's most favorite- climbing under his leap table to play with the curtains.  


Results of getting caught and removed from said trouble:

This process has been known to repeat several times in a row.  Add a skipped nap to the mix and it makes for quite the interesting afternoon!  You're so lucky you are cute and irresistibly squeezy.... no wait.... I'm the lucky one. <3


I must add a little brag in here too- Evan's OT was here earlier this afternoon and commented that he's now doing tasks at an 11-12 month level- one was even in the 13-18 month range!  You may recall in a previous post I mentioned his last evaluation- his fine motor skills were lagging behind in the 7-8 month range in December.  That's quite the progress!! :))

...and then there was MORE snow!

Mother Nature has been teasing us here in Maryland.... we have been experiencing a very cold winter accompanied by a few feet of snow, but then saw a glimmer of light at the end of the snow covered tunnel with some spring-like temperatures in the upper 60's and even tiptoeing into the low 70's.  Last night she dumped another 5 inches on top of some sleet- just when we thought Spring was around the corner.  I guess this was our reality check that it is indeed still February.

As much as the kids complained about missing school (they've had 6 snow days already this year and needed to make up two; today was actually supposed to be a make-up day but schools closed yet again) they did enjoy time out in the snow, especially with the sun shining brightly.

You'd think snow was made of cotton candy or marshmallow the way Justin eats it constantly- he's so fascinated by putting it in his mouth and munching.

walking up the hill to sled.... while munching on more snow...

pausing for another snow snack....

and again...

Made it to the top finally!!

....and time for another snack of course!

Evan napped during today's snow outing... but we can always use a dose of Evan cuteness, so I'll throw in some bathtime fun ;)

Sometimes Miracles Hide

This book was lent to me by my friend, Kelly, who lives up the street.  She has three children also- her youngest is a classmate of Kaylin's, and her middle child sports designer genes like our Evan.  The moment we received Evan's diagnosis shortly after his birth, I thought of Kelly immediately, and she was the first person I called when we got home from the hospital.  She has been an amazing resource, and we already loved her little Riley dearly, so we knew everything was going to be just fine.

In the book such touching stories accompany the lyrics of this song.  I wanted to purchase a copy of my own, but found it extremely difficult to get my hands on.  The song is beautiful!  While my own personal experience is a bit different since we didn't have a prenatal diagnosis, I certainly can empathize, and know deep in my heart if we did get a prenatal diagnosis, there is no way we could have chosen to terminate.  It breaks my heart when I read about pregnant mothers contemplating this decision.

Just scroll down to the bottom of my blog to pause the music player before playing the music video.  Enjoy!

Tuscan Pasta recipe

Ok, I'll be the first to admit, I really do NOT enjoy cooking.  I wish I did, really I do.  So when I find a recipe that is easy as well as yummo- I'm all over it!  I was looking through my cookbooks over the weekend- which I haven't done in a few years- I know, SO bad.... I came across this recipe for Tuscan chicken and just had to try it.  It was so good, so simple, and just about everyone in the house ate it- minus one extremely picky 5 year old who picked out the chicken and snubbed the rest.  Yes, Evan ate it too!  This is the first family meal he was able to eat in its entirety! :)

Tuscan Pasta

                                1 lb. boneless skinless chicken breasts, cut into 1 inch pieces
                                1 can (15 oz) red kidney beans (I used light red) rinsed and drained

                                1 can (15 oz) tomato sauce

                                2 cans (14.5 oz) Italian-style stewed tomatoes

                                1 jar (4 oz) sliced mushrooms, drained

                                1 medium green bell pepper, chopped

                                1/2 c. onion, chopped

                                1/2 c. celery, chopped

                                4 cloves garlic, minced

                                1 c. water

                                1 tsp. dried Italian seasoning

                                6 oz. thin spaghetti, broken into halves

Place all ingredients except spaghetti in slow cooker.  Cover and cook on LOW 4 hours or until vegetables are tender.

Turn to HIGH.  Stir in spaghetti; cover.  Stir again after 10 minutes.  Cover and cook 45 minutes or until pasta is tender.  Makes 8 servings.

Nutrients per serving:  Calories 272, Total Fat 2 g, Protein 23 g, Carbohydrate 42 g, Cholesterol 34 mg, Sodium 666 mg, Dietary Fiber 6 g

Dietary Exchanges:  3 Vegetable, 1 1/2 Bread, 1 1/2 Meat

Taken from: Easy Home Cooking Slow Cooker Recipes

Please leave a comment if you try it and what you think of it!

To the one who made me a mother

You'll have to bear with me, for I am having a moment.  I don't know what it is about the number 8... but it just seems like there is a huge difference between my daughter turning 7 years old and now jumping to 8 years old.  Today, February 10th, 2011.  Eight just seems so OLD... my baby girl is growing up entirely too fast, and I'm not ready!

When I posted Evan's birth story, I commented how I could remember every detail about that day it seems, and yes, after 8 years I can still remember the details of my pregnancy and birth experience with Kaylin as well.

It certainly doesn't seem like it's been over 8 years ago already, when I nervously walked into the GBMC fertility center for my first ultrasound following our IUI (intra-uterine insemination) procedure just 2 weeks prior.  We had struggled with infertility for 4 long, grueling years, with one miscarriage just 10 months into our journey.  How I longed to be a mother.... have a precious child growing inside me.... feeling the flutters and kicks.... I swore I'd be willing to give up a limb just for the chance to have a little person nuzzle into the crease of my neck, clinging to me for comfort.  Comfort that could come from no other, only from Mommy.

I nervously undress and climb onto the exam table... doctor comes in and performs yet another ultrasound- they are regular at every fertility appointment, and I had been going there for almost a year after having no luck with my regular OBGYN.  It didn't take long for him to find the first signs of life, and I was immediately on cloud nine.  After I made it past my first trimester safely, we began sharing the news.

Taken shortly after we learned the good news, but weren't ready to tell anyone yet!

I loved every minute of being pregnant- I had minimal morning sickness, no complications, and swore I'd be content being barefoot and pregnant for the rest of my life!  I don't know if it was just the magic of my first pregnancy, or all the work it took me to get there, but I was in pure heaven all the way to the very end- well, until I was induced in the hospital!

4 months pregnant

5 months pregnant

7 months pregnant

8 months

Delivery day, 5:00 AM- ready to pop!

I arrived at the hospital around 5:30 AM on February 10, 2003, 6 days after my due date, to be induced since my blood pressure was rising and I wasn't even 1 cm dilated yet.  The nurse hooks up the monitors and she immediately has to turn the volume way down since Kaylin is kicking like crazy- she had been very active throughout my pregnancy and all the way up to the end!  It was comforting to hear her movements along with her steady heartbeat.  Then the pitocin starts....

I start feeling more uncomfortable, so I request my epidural.  I'm about 3-4 cm and the doctor broke my water not long ago... with the pitocin the contractions are getting more intense.  Epidural goes in fine, but I'm finding that I can still feel a small circle of pain in the center of my lower abdomen- it's tolerable though, so I just shrug it off.

A few more hours go by and I'm making great progress- dilating about 1 cm per hour.  As my labor is progressing, the epidural is becoming less and less effective.  It's gotten to the point where I am breathing steadily to tolerate each contraction and I call the doctor back in.  He checks me and I'm at 8 cm- too late to re-do the epidural.  They put in a call to anesthesiology.

By the time the anesthesiologist comes in, I'm dilated to 10 and ready to push.  The anesthesiologist is pumping meds into my IV, and his mouth drops to the floor when he sees me lifting my own legs in and out of the stirrups to push with each contraction.  "I can't believe you're moving your own legs!!"  Yea, this epidural really isn't doing a thing at this point.  My legs are heavy, but I certainly can move them, and the pain is INTENSE.  When someone would ask me to rate my pain level from 1-10, I'd continually yell, "NINE!" figuring this is the most pain I've ever felt in my life, but I guess it could be worse??  The contractions are coming faster and faster, and when they come, they are full force.  The pain meds pumped into my IV aren't doing a thing.  I continue to push steadily for 2 1/2 hours to no avail.  Contractions aren't even stopping but for a second or two, and Kaylin hasn't dropped at all.  From the beginning when I was first examined, my doctor told me that Kaylin was facing up instead of down and her head was a bit cone shaped due to her positioning.  When baby faces up, this brings a harder labor, making contractions worse and also making it more difficult for baby to come out.  Well, Kaylin was having no parts of coming out!  After the 2 1/2 hours of pushing, my OB decided to take me back for a c-section since I wasn't making progress at all, and I was completely exhausted and in excruciating pain.  When I first started pushing I could feel a little bit of relief, but after a while, the pushing was even more painful- I could tell something wasn't quite right and a vaginal birth wasn't in the cards.  I was SO ready for them to just take her OUT!

I remember the nurse wheeling my bed down the hallway as I continue to breathe through these horrendous contractions which won't stop... and hearing my dad in the waiting area saying, "Hi, Ame!!"  Yea, I was having no parts of even opening my eyes to acknowledge anyone!  I was focused on breathing and trying to get through this the best I could.  In the OR, they rip the tape off my back from the epidural (yea, that felt good... NOT!) and gave me a spinal.  Now THAT finally did the trick and I was feeling no pain.  YES!!  I was sooooo tired...it is now past 6:00 PM and I've been laboring for 12 hours.  My one thought as I lay on the operating table- this baby BETTER be a girl!!  After all this laboring, and all the pink at home... we better be getting our little Kaylin Sue.

As the operation continues, I have the sudden feeling like I can't breathe.  I'm starting to panic.  I motion to Mike sitting behind me as well as the anesthesiologist there with me (I think I met every anesthesiologist in the hospital by this time) that I can't breathe.  The anesthesiologist reassures me that they are watching my O2 levels, and it's common to have this feeling since my entire diaphragm is numb. He put oxygen on me and my nerves settled a bit.

Kaylin finally made her appearance with the help of my wonderful OB, Dr. Zamaria, at 6:36 PM.  She screamed nice and loudly- music to my ears... and the announcement- "It's a Girl!!"  Whewwww!! :)  Kaylin weighed in at 7lbs 4 oz and was 20 inches long.  Dr. Z also informs me that there was no way Kaylin would have fit through my pelvis- her forehead was all bruised since it was being pressed up against my pelvis each time I pushed.  Poor baby!  No wonder it hurt so much while I was pushing.

As the anesthesiologist wheels me to the recovery room, he combs his fingers through my hair, asking if it's my natural hair color.  I answer yes, and he then informs me that studies have been done showing that redheads have a higher tolerance to anesthesia.  Sure, NOW you tell me!

getting her first bath in the recovery room

Happy girl!  All clean :)

Can't believe I'm sharing this photo... I'm swollen like a balloon from the pitocin and other meds... and I look just a TAD tired!

Proud Papa!

We had a bit of a wait in the recovery room- apparently after all the meds that were pumped into me, it took a long time for me to regain feeling again.  I wasn't allowed to leave the recovery room and go back to my hospital room until I could move toes on both feet.... Hours passed, and when I could barely budge my big toe on my right foot (I could move my left toes earlier but not the right), after 9:30 PM, I finally got to go back to my room.  It is there I had the most wonderful post-birth experience- the only time I would get to room with my baby, nursing her whenever she fussed.  I really was bitter I didn't get this with either of my boys since they needed to stay in either the NICU or special care nursery.  I had no idea this would be my easiest ride when it came to giving birth!

 

We came home on Thursday, the 13th- a day earlier than the doctor would have liked, being my first c-section, but a blizzard was coming so he let us get home safely.  And thus begins my adventure into motherhood... one I cherish with my heart and soul, and thank God daily for giving me this amazing opportunity.

Happy Birthday, Kaylin Sue.... I love you SO much and am so very proud of the young lady you are growing to be.  Thank you for coming into my life and making me the mother I've always dreamed of becoming.

In My Daughter's Eyes - Martina McBride


In my daughter's eyes I am a hero
I am strong and wise and I know no fear
But the truth is plain to see
She was sent to rescue me
I see who I wanna be
In my daughter's eyes


In my daughter's eyes everyone is equal
Darkness turns to light and the
world is at peace
This miracle God gave to me gives me
strength when I am weak
I find reason to believe
In my daughter's eyes


And when she wraps her hand
around my finger
Oh it puts a smile in my heart
Everything becomes a little clearer
I realize what life is all about


It's hangin' on when your heart
has had enough
It's giving more when you feel like giving up
I've seen the light
It's in my daughter's eyes


In my daughter's eyes I can see the future
A reflection of who I am and what will be
Though she'll grow and someday leave
Maybe raise a family
When I'm gone I hope you see how happy
she made me
For I'll be there
In my daughter's eyes 

 

Update on Peter and the Pure Love Giveaway

The Giveaway has had a HUGE response!!  Both Olga and Kareen's goals have been MET!!  The focus is on Peter, and there are 2 days left in this phenomenal fundraiser.  It was scheduled to end tomorrow, but was extended an extra day due to some great news as well as some not so great news.

The great news- a family has shown interest in Peter and has begun the process to bring him home!!  There have been no announcements yet as to who the mystery family is, but it is in the works.  YAY!!

The bad news- Peter's health is declining. :(  As stated on Reece's Rainbow:

From his medical records: severe delay of stato-motor development, congenital heart disease(ventricular septal defect with high degree of pulmonary hypertension), condition after closing of patent ductus arteriosus and coning of pulmonary artery, retinal angiopathy, farsightedness, nystagmus


I'm sure the concerns are related to his heart, specifically the high degree of pulmonary hypertension.  From what I understand he had another surgery not long ago, and he's not doing well.  This so breaks my heart, knowing there is no one there to hold him close and calm his fears while he fights for life.  What reason does he have to fight there in the orphanage?  Fight so he will be transferred in a few short months to a mental institution?  If only he knew there was a family here working diligently to bring him home and give him a new life worth living.


Patti has been working hard on her fundraiser, and over $13,000 has been raised for Peter so far!!  The goal is a full grant- $20,000.  If you haven't taken the time, please consider donating just $10- you will be eligible to win one of numerous prizes, many added after the fundraiser began.  If you already donated, you can donate another $10 and enter again since there is such an urgency.  But most of all, please keep Peter in your prayers that his health improves and he makes it home to loving arms.


http://babynumber10.blogspot.com/ 

Holy Blog-o-rama, Batman!

Looking for more blogs on Down syndrome?  One of the awesome moderators of Babycenter.com's Down Syndrome Bulletin Board, aka my cyber home away from home, has compiled a list of all the blogging mamas from our board!  Go check it out- what a wonderful resource!

http://yomammamamma.blogspot.com/2011/02/new-and-improved-baby-center-blog-roll.html

Pure Love Giveaway

I want to introduce you to another mama in the Down syndrome community- her name is Patti, and she is an absolutely incredible mother to 10, that's right, ten children!  Her 10th wears the designer genes in her family- little Lily.  Patti has a fabulous blog with a much bigger following than my new lil blog, and I had to share this awesome giveaway she's doing!!  She is giving away at least 15 prizes including an Apple iPad and a Nikon D90 Digital Camera Kit with a 18-105 VR Lens and all you need to do is donate $10 to one of three children from Reece's Rainbow to enter!  Donate to each child and you can enter three times!  Consider this a $10 raffle ticket to save a child's life.  It doesn't get any better than that.  After you make your donation, simply post a comment on her blog that you did so.  If you make more than one donation, you make a separate comment for each donation.  The comment is your raffle ticket so to speak.

Check out Patti's blog:  A Perfect Lily

She has been raising money to help three children from Reece's Rainbow, one of which totally breaks my heart.  The two girls you will see there, Olga and Kareen, have been fortunate enough to have their forever family working to bring them home!  And it was with the help of Patti and her amazing blog that Olga's grant grew to be so large- go check out how much money is in her account!!  Thanks to Patti, a family has chosen Olga due to this large fund to help bring her home.

Olga

Kareen

Patti is hoping to do the same for sweet little Peter.  Peter has been on Reece's Rainbow since he was born, and will be turning 4 years old this month- he faces the mental institution in just a few months if he isn't chosen for adoption!!

Peter- facing the institution very soon

Reading Patti's post breaks my heart- this child has never in his 4 years of life, spent any amount of time outside. :(  This is just one facet in the life of a child with a disability in these orphanages.  I've written about the living conditions in the mental institutions which are far worse, and will be a death sentence for Peter if he doesn't find a forever family.  He so deserves to be hugged, loved, he deserves to receive proper medical treatment to take care of his heart and his eyes, and given a chance just to live.  Instead he just lays in his crib... yes, for four years that's pretty much all he's been doing.... and will remain to do so until he dies in a mental institution in a cold, dark room, hearing the moans and cries of others around him... if he's not saved.  Please consider donating to his grant- just $10 would help so much... if you can donate more, even better.  Our goal is to build up his grant money to the full $20,000 to help a family bring him home as soon as possible.  The prizes Patti is giving away are the icing on the cake!!  Please go to her blog now and help save these children.

Patti as well as other bloggers have had huge success with giveaways as a fundraiser, and I've been considering doing the same.  I know my blog is fairly new and I don't have a huge following, but I do get a decent amount of viewers even if they aren't all showing as followers, and I believe we CAN make a difference!  If you have an Etsy shop or any other home business etc. please let me know if you'd be willing to donate an item for a giveaway- it doesn't have to be expensive like an iPad of course!  I would love to do something like this for Lesia's family since they recently lost so much money in that awful scam.  You can comment here. Thanks so much!