October, 2013 Down Syndrome Awareness... Day 27

Meet Ciarra.

She is 15, a freshman at Brewer High School and a cheerleader.   

To say she loves cheering is probably an understatement.  

 I’m pretty sure it’s who she is.   

It’s what she does.  

She also has Down Syndrome.

I have known Ciarra and her mother Michelle since Josh was born.  I have never met them in real life, but they were among the first people I found online when I did my google search for families to connect with, to learn from and be inspired by.  

Inspired am I…

When I asked Michelle what she wanted you to know about this story… what she would tell others… she simply responded that she would tell others to have faith, and never be afraid to let your kids try things (like cheering).  

If I know Michelle, I think she knew Ciarra would be fabulous with pom poms… 

I think what has both surprised her and humbled her tho is just how 

fabulous everyone ELSE has been.  

This story is inclusion at its finest.   

But, I think what touched me the most is that it’s also completely UNstaged.  

 It’s not inclusion because they have to or because someone told them to.

It’s not uncomfortable or difficult or fake. 

 It’s just friends. 

The cheering squad at Brewer High School get it.   

And it’s a wonderful thing.

October, 2013 Down Syndrome Awareness... Day 26

Today's post was borrowed from an 8th grader's facebook page (I did get permission). Someone who gets it. And stands up even when she's the only one standing.

Thank you, Maggie... from me and all the other families that you impact with your brave heart.

I wish I was more like you. I hope to be... someday.

(And Steph, I think it's safe to say that you have done well. You have taught her empathy and courage. ♥).

 

Can I just say, I am beyond sick of people saying, "retard" "retarded" "gay". I'm constantly hearing, "that's gay." "that's retarded". People will say that about a comment someone makes.

"No you can't go to the bathroom." "That's gay." So that statement likes the same sex? That doesn't make ANY sense, and doesn't make you sound very smart.

I think it's awful when people say things about people who may not be the same, who may struggle with learning, or anything, in any way.

Who cares. If they're happy, let them be. If they're not happy, try to make them happy. Do something nice for them. It'll make their day.

This week I have heard multiple remarks about someone making a face, then someone saying they look like the have downs. I've heard a few others. I take offense to that.

My cousin Taylor has Down Syndrome. I'm down with people saying stuff about that , because I think about her. She is a happy, funny, sweet 13 almost 14 year old girl with Down Syndrome.

She's HAPPY. And she deserves to be. So does everyone else with Down Syndrome. If they heard the things that I hear. Think of how upset they would be.

NOBODY deserves to feel that way. No matter who they are, or what they do. ~ Maggie M

 

—

October, 2012 Down Syndrome Awareness... Days 24 & 25

We made the front page. 

http://www.theweeklysentinel.com/

(Not sure if that link will work and can't figure out how to link things here on my blog.  If anyone is well versed in blogs, I'd love a tutorial.  In English.  My kind of English.  Simple.)

Just want to thank the person who wrote the story for us... she was sweet and I think she did a fabulous job telling our story.  The quotes she used were right on and she didn't even put an "s" on Down Syndrome.  She did her research. 

Grateful. 

Just in case the link didn't work, here's the photo they used in the article. 

And a few more from the bribery session to get Josh to smile photo shoot...

Oct, 2013 Down Syndrome Awareness... Day 23

This post was written by a mom whom I admire so much. I am old enough to be HER mom (oh my goodness Melissa, I JUST realized that!!)... but she already has more grace, courage and wisdom than I have ever had.

The post doesn't need any of my words to introduce it. But it does need a warning attached... GRAB YOUR TISSUES.



From the moment that my husband and I started dating, it was evident that we were meant for each other. We both loved northern Maine and planned to move back as soon as possible, we had similar morals and values, and we both wanted four kids! That’s why I don’t think anybody was surprised when Caleb and I, just a few short months after we were married, announced that we were expecting our first child. Our parents were over the moon! This would be the first grandchild on both sides of our family!

The morning of my mid-pregnancy ultrasound, my husband and I discussed our hopes and dreams for our future child. My husband thought that we would have a boy, while I insisted that I knew it would be a girl. Our baby’s gender was one of the only things on our mind. Boy or girl? Pink or blue? Cars or dolls?

Finally, after what seemed like forever, the sonographer called us in. We could barely contain ourselves! Caleb and I held hands as the sonographer performed the ultrasound. The anticipation mounted until she said the words that we had been waiting to hear: “It’s a girl!” We were thrilled; unfortunately, our elation was short-lived.

We noticed that the sonographer was acting a little “off”. When we asked her what was wrong, she said, “I just take the pictures, the doctor will be in shortly”. One of my very best friends is an ultrasound tech, so I knew that this is code for, “something is not right”.

It’s so funny how finding out whether we were going to have a boy or girl seemed so significant an hour before, and now we were worried about the health of our unborn child. When the doctor came in, she explained to us that the sonographer identified 2 “soft markers”. Basically, our little girl had a bright spot on her heart and bowels. We were told that these spots elevated the chance that our daughter could have cystic fibrosis, Down syndrome, cytomegalovirus, etc.

All of a sudden, we were meeting with a genetic counselor to discuss our chances of having a baby with Down syndrome and what testing options we had available. Based on my age, our baseline chance of having a baby with Down syndrome was about 1/1400. After a thorough medical history combined with the ultrasound results, the genetic counselor announced that our risk of having a child with Down syndrome was 1/100. With those low odds, we did not want to expose our baby to the risks of an amniocentesis, so we opted to do a very new kind of blood test called the noninvasive pregnancy test, or the NIPT. At the time, the test was under a year old but shown to be extremely effective at screening from chromosomal abnormalities. Basically, a sample of blood is taken from mom and at the lab, they are able to isolate and analyze the baby’s DNA.

Waiting for the results was agonizing. Caleb’s brother, Ian, came to visit us during this interminable period. At one point we were walking to a restaurant, and I told Ian, “Our daughter is going to have Down syndrome. I just want you to know now so that you aren’t surprised and so that you have time to get used to the idea. She is going to have Down syndrome.” Ian said that he would take 1/100 odds “any day of the week and twice on Sunday”. Caleb said that I freaked his brother out and that I shouldn’t say anything until we got the results. The chance was so small, after all. I told him that I knew our girl was going to have Down syndrome. Just like I knew she was going to be a girl. I couldn’t explain it. I just knew.

The morning after Christmas, we were at my parents’ house. I realized that I had forgotten my phone downstairs, so I asked Caleb to go get it while I went to the bathroom. We were expecting the call any day now. Sure enough, as soon as he grabbed my phone, it started ringing. It was Tufts Medical Center. As I walked out of the bathroom, I heard Caleb ask the caller to please hold on a minute while he got me on the line. We sat down in the kitchen together and put the phone on speaker.

The anticipation in the room was palpable. I could feel my whole body tingling.

Caleb and I held hands while we heard our genetic counselor say, “we got the results back and they were positive for Down syndrome”. At this point, Caleb and I both tried our hardest to keep it together for the rest of the phone conversation. Our genetic counselor talked to us about our options. We still had time to terminate the pregnancy. We told her that we did not want to go that route. She mentioned that there were support groups. We had the option of meeting families who had children with Down syndrome, etc. It was all very overwhelming. When we hung up the phone, we both burst into tears.

Down syndrome doesn’t happen to 23 year old newlyweds. At least that’s what we thought. Before our daughter’s anatomy scan, Down syndrome was not on our minds at all. It was something that happened to older parents. For us, it was a non-issue. It didn’t exist.

After we recovered from the wave of crushing sadness (which only lasted a few days) , I sprang into action. I decided that I was going to learn everything and anything about Down syndrome. I became a sponge. I ordered books, subscribed to blogs, reached out to the Massachusetts Down Syndrome Congress and the Maine Down Syndrome Network. I was unstoppable.

We were not going to hide from this during my pregnancy, and we certainly were not going to hide our daughter once she was born. I wanted to be able to show her off, just like any other mommy wants to show off her new baby! I wanted our loved ones to greet her with tears of joy, not tears of sadness. I wanted people to see that our experience raising Rosalie was not going to be a whole lot different from their experiences raising their own children.

In order to share the news with our friends and distant family, I wrote a post on our blog about Rosalie’s diagnosis. The support we received was astounding. I received messages of encouragement from people I barely knew. I made friends with strangers who have children with Down syndrome. Our own family rallied around us. It brought us so much comfort to feel surrounded by such love and acceptance.

On April 27th, 2013, our sweet daughter, Rosalie, was born. Thanks in part to our prenatal testing; I am happy to say that it was the best day of my life. When I looked at her the first time, I didn’t see Down syndrome. I saw my beautiful baby girl.

Caleb and I were mentally prepared for potential health problems (children with Down syndrome are more susceptible to feeding problems, heart problems, hearing problems, vision problems, digestive problems, cancer, etc.), but they never came! Aside from two tiny holes in her heart and some minor hip dysplasia, she was as healthy as a horse.

We’re not going to let a little thing like Down syndrome get in the way of Rosalie having a happy and fulfilling life.

At just under 6 months old, she is already changing hearts and minds. I can’t wait to see what the future has in store for my exceptional daughter. ~ Melissa 

Melissa, thank you for being you. For being strong and brave. Rosalie is perfect for you and Caleb... God couldn't have done any better.

 

October, 2013 Down Syndrome Awareness... Day 22

Down Syndrome Awareness Month... Day 22

This post will show a side of me that I'm not proud of. Vanity.

This post will be vanity at its very best.

You have been warned.

We received the news that Josh would be of the male variety at our 20 week ultrasound. That same week, I began shopping. I love a good deal and I love nice clothes (you can blame my mother… THAT woman likes to shop). I found some great things. Really cute. Stylish. Great baby boy clothes.

And then he was born with Down Syndrome.

Almost immediately, my mind wandered to those clothes. I felt so sad that Josh would not be able to sport that great pair of jeans I found for him at the gap in size 0-3 mo.

Dumb Down Syndrome… now my kid wouldn’t be stylish.

What?

Obviously, my own prejudices were taking over even before my son was 2 hours old. Visions of overweight, sweatpants, suspenders, crooked teeth, fingerprint filled thick glasses… prejudice, vanity, things that don’t even matter.

By the end of that day, I had found access to a computer and googled “attractive families living with Down Syndrome”.

I am not kidding.

(I wish I was)

Eventually I was led to an online community and enter Dawn and Jack.

I found photos on this website of the most beautiful family living with Down Syndrome. I mean, this is a really attractive family. They are the epitome of lovely.

But that’s not all I saw.

God saw fit that I could look beyond attire straight to their smiles. Their honest to goodness life is really good smiles. What comfort. What hope. What peace filled my heart.

Honestly, it’s so funny how God works and that He even cares about my affinity with dressing nicely… but He does. He used it teach me something much more important.

Jack is just a bit older than Josh and I have thoroughly enjoyed watching him grow… and have more than thoroughly enjoyed his antics.

Dawn certainly still has that same beautiful smile and their family still gives me the same hope they did on the very first day of my journey… just deeper.

Thanks for letting me snatch your pictures Dawn. They make me smile. 

Told'ja they were beautiful people (inside AND out).

October, 2013 Down Syndrome Awareness... Day 21

When I asked this next Mom to share about her experience with Down Syndrome, I did so because she is secretly my rock (something she doesn't even realize).

Her and I have participated in the same online community for Down Syndrome for as long as I can remember. The community is one where information is shared… questions asked, small victories celebrated, encouragement given and connections are made.

Amy is always faithful to be available for each of us… answering, celebrating, encouraging and connecting.

I always search out her responses because she’s down to earth, no nonsense and realistic. I trust her and have never met her… funny how Down Syndrome bridges people’s lives.

Thank you for sharing Amy, I appreciate your input both on my facebook/blog and into my life.

“I was pretty unfamiliar with Down syndrome when our son was diagnosed (before he was born). He's now 11 and I guess the simplest way to say it is that his Down syndrome suits me just fine! I like that he's affectionate and wakes up happy. I like that I get to be a part of this large community of chromosomally-enhanced families who understand us and who are, on the whole, so unpretentious and down-to-earth. I like that he stayed a baby longer and that even now, in the throes of puberty, he likes his old-fashioned childhood stuff. I like that he's a whiz at technology. I like having him blow away expectations when we give him opportunities. It all suits me just fine -- wouldn't want it any other way!” ~Amy

I wouldn't want it any other way either, Amy.

October, 2013 Down Syndrome Awareness... Day 20

I

 

LOVE

 

THESE

 

FACES

So this past weekend our family was interviewed by a little local newspaper.  The reason for the article is to spread awareness about Down Syndrome.  The theme of the article is how it is to grow up with a sibling with Down Syndrome.  The reasoning behind doing the article was to help people.

The reporter was gracious and careful and lovely.  She asked good questions and we gave good answers, I think.  I had given her access to my facebook prior to the interview so she could get to know us a little, hoping to make her job a little easier.  She was honestly so sweet about my writing, but asked me to make my facebook public so she could point the readers in my direction.  "I think you really have a way of touching hearts", she said.  I was humbled and tickled... but had (big) concerns about opening my life up like that.  

So the argument in my head ensued.  Do I open it?  Do I keep it as friends only?  Do I create a whole 'nother page... just for Josh?  Do I create a group on facebook... again... just for Josh.  Do I move everything concerning Down Syndrome Awareness to my personal blog?  There were good reasons for all and obviously you can see what we decided (moving things to the blog).

In the process of thinking (and over-thinking) it through... I kept thinking about doing something just for Josh.  I just didn't sit right.  It felt wrong.

You see... we're all in this together.  

We are a family.  

Even during the interview... Caleb was missing and we felt it.  She (the gracious reporter) waited for him to come home to complete the interview.  She wanted him to be involved.  It wouldn't have been the same without him.  

Down Syndrome affects each of us... all in different ways but it definitely affects each of us.  We encourage each other and reprimand each other and pray for each other and... and this is a big one... laugh at each other.  We are (very) far from perfect... we don't even get near slightly good... but we are family.

The end.  

October, 2013 Down Syndrome Awareness... Day 19

I love this photo.

Because he has 3 older siblings and because those siblings are involved in sports, Josh has been to his share of baseball games, football games, softball games and wrestling meets.

He does play baseball on a special needs baseball team, but would love being out there on the field (or on the mat) just like his 3 older siblings.  He loves everything about sports.

I sometimes feel guilty for not getting him more involved in local athletics, but it really does take a level of commitment on my part that I'm not totally comfortable with.  First, you have to trust that the coach wants him on the team because, if the coach isn't into having a kid like Josh on the team, it just can't work.  I admit... I struggle with that kind of trust when it comes to Josh.  Second, I'd really have to be available to help and I'm not really one to be in front of the crowd.  Josh did not get his love for being the center of attention from me.

He never complains or whines to join a team or join his siblings.  He's a great fan too.  He's content to go and sit in the stands, cheering (usually by name and usually loudly) for his 3 siblings and all their friends.  He's been known to cheer for the opponent too (usually by name and usually loudly).  I love that about him... he doesn't take sides.

October, 2013 Down Syndrome Awareness... Day 18

Phone ringing... answering machine picks up...

"Good evening, this is Ron Robert, principal of the North Berwick Elementary School"

Josh: YES!!!!!!!!!!!! (jumping up and down, fist pumping, running toward phone, swirling in circles.......)

Wish I had that much power to make him all giddy.




This little story is being brought to because of my sister.  You see, I posted it on my facebook last week because it made me laugh.  When that phone rang, Josh literally reacted exactly how I described it... he was FULL of excitement because Mr.  Robert was calling our house.  He loves connect-ed calls (calls that are made district-wide to inform families of the goings on at school).  He gets all excited every time he hears Mr. Robert's voice.  I honestly think he feels Mr. Robert is calling him because he's so important or something.  Hey... whatever makes you feel special, I guess.

(Sadly, this probably doesn't say much for having a healthy fear of the principal.)

When I posted it, my sister commented "the Josh that is joy".

So true.  Simple.  And joyful.  

If something so seemingly insignificant could cause me to fist pump and twirl my body... well, I'd give my right arm... (after I got up from the ground because twirling my body would DEFINITELY put me on the ground).

His joy is contagious.

Sharing these photos here because they make me smile.  First... who would have thought to take off your shoe and hold the football with it?  And second... NICE PUNT!

October, 2013 Down Syndrome Awareness... Day 17

This post is about friends. True friends.

I know that having a mom call you and say "can (insert your child's name) come over after school today?" is no big deal. Right?

Well, you're wrong. It is a huge deal.

In fact, it happens so rarely that I don't care if the government closes (okay... sorta being funny there) or the world collides with the moon... I will find a way to get him there.

Josh was invited to a friend's house today. And we celebrated.

I joined him after a little while for coffee with the mom and he asked me to leave. He asked me to pick him up at 5.

I watched the 3 boys run, climb, laugh, wrestle, play, whisper to each other and laugh some more.

I sat in the kitchen while he was outside for a long time with the others.

I didn't check on him once.

I didn't rush to his side to be his voice.

I didn't make certain that everyone was being fair or that they could understand him or were including him.

I let them be.

And I thanked that mom for being MY true friend. To her it wasn't a big deal. To me... it was the biggest deal ever.

This is Matthew and Josh... one of the 2 boys with him today. Matthew is a good friend. He's the best kind of friend because he doesn't coddle Josh or put up with him... he's not afraid to say no to him or walk away from him. He helps him without hindering him. He's a treasure...

October 2013 Down Syndrome Awareness... Day 16

Day 16... Down Syndrome Awareness Month

My husband is constantly getting irritated with my need to click.

You see, I have this longing desire to connect with people… our doctors, the teachers, insurance people, the mail-woman, the cashier at Market Basket, moms of my kid’s friends… you get my drift right? Connections are important. My husband just doesn’t see that (he’s SUCH an engineer, lol).

I love to get to know people but am not considerably talkative or outgoing. It's so important, I think, because they do not come easy for me. When they happen… it’s fantastic.

Amy and I clicked.

Amy is a busy homeschooling mom of 6 who asked me to come sit with her in the ICU while her son was hospitalized. It was there, in that small cubicle of Maine Medical’s ICU, covered in wires and tubes and bells and whistles, that she became a very good friend. A confidant. Someone who gets me.

We don’t get to spend time together like I wish because of the distance between us, but we know that we have each other’s back in prayer... and we're only an email, text or facebook message away from each other.

I look at Amy and see strength. Her days are long (and sometimes difficult). Her children are young and full of energy. And I know she doesn’t see the strength that others see, but it’s quite obvious that God makes up the difference in her life. In my life. In this life.

When I asked her to write for me, she said I could share one of her blog entries and the song she wrote for Noah. Both are incredibly beautiful and incredibly packed with love.

As I was re-reading her first blog entry yesterday, I found myself right back at the very moment Josh was born. It was just like I was living (again) what I was reading. The place where she describes that her world came to a halt made me gasp.

Thank you, Amy… for being so vulnerable, honest and willing to share. Thank you for being my friend. 

A link to her (beautiful) blog... http://eightdrakes.blogspot.com/2013/09/my-introduction-to-noah.html

October, 2013 Down Syndrome Awareness... Day 15

A big long ramble from a thankful heart...

There is a lot of pain in this world, isn't there? People suffer thru cancer and chemo and mouth sores and awful nausea. People die too young in car accidents. Kids get sick and some die. There is so much suffering in other countries. And there are just plain bad people... people who do bad things and cause pain and hurt in other's lives. There is crime and there are drugs and there is a lot of scary in this world.

All I have to deal with is Down Syndrome.

I am so blessed.

Of course there are hard days. Of course there are days when I worry that he'll be teased or treated terribly. Of course there are times when we are running late and has to stop to smell those dumb roses just one more time. Of course it frustrates me when he won't get dressed or eat anything but yogurt. Of course the lack of communication weighs heavy on my heart. But...

All I have to deal with is Down Syndrome.

I am so blessed.

My heart is so full today. I'm not sure why God puts things on our hearts the way He does. Some days (most... to my shame) I'm completely oblivious to the suffering around me. But some days, I suffer because of their suffering. I thank God that He allows me to feel so deeply. Health is beautiful. Being able to pay the bills is beautiful. Living a comfortable life is beautiful.

Suffering is beautiful too.

It's not really my right to say that as I haven't done a whole lot of suffering in my life... but I have witnessed suffering be beautiful and I have been blessed because of the suffering of others.

All I have to deal with is Down Syndrome.

I am so blessed.

Some people ask me how I do it. I know what they mean and I know what their intentions are. I know they watch me try to coerce Josh to brush his teeth or leave a room. I know they listen to me try to converse with him. I know they mean well. But really... my life is magical and easy and fancy compared to so many others in this world.

People pray for healthy babies. I understand that... but when the baby is not healthy it's still a blessing. Hard, difficult, painful... yes... but oh, the blessing. Even if that baby has Down Syndrome... and a heart defect... and whatever else might make it look, act, learn, eat, live differently.

I don't even know... I'm rambling and just sharing what God is doing in my heart. I'm so thankful for Down Syndrome in my life... but it is... JUST... Down Syndrome.

1 Peter 3:7-9
Finally, all of you, be like-minded, be sympathetic, love one another, be compassionate and humble. Do not repay evil with evil or insult with insult. On the contrary, repay evil with blessing, because to this you were called so that you may inherit a blessing.

And this... a beautiful face of someone who has JUST Down Syndrome. I AM so blessed.

October, 2013 Down Syndrome Awareness... Day 14

Today’s story is about a boy named Ephraim. And his mom, Erica.

His mom and I have never met in real life, but that doesn’t stop us from sharing a bond that’s unbreakable… quite remarkable. It's quite special when you share the bond of Christ and Down Syndrome. That's not something I expect everyone to understand and know that probably even sounds silly... but it's unique, unusual, special.

I remember when Erica first learned about the diagnosis and she called me. She was sitting in a parking lot somewhere in Texas and I in my mother's living room. As we were talking, I could feel her strength building.

She donned her proverbial boots and pulled herself up by the straps and has never looked back. She faced the challenge with courage, determination and love.
I know she was frightened and had many concerns, but she trusted the One who sent ‘wee E’ to her heart and today?

Well, today he’s beautiful. Thriving. Wonderful. And so is she.

Thank you for writing for me Erica… you are so special.



Ephraim was diagnosed with Mosaic Down Syndrome when he was ten weeks old. What is MDS? It's the most rare form of Down Syndrome, affecting only 1% of people with DS. It means that all of Ephraim's cells do NOT have the extra chromosome. Some have 46 like they "should" and some have 47.

I joke that God chose MDS for E just for me. I am a control freak and planner, I dislike surprises and want to know what is going to happen. His heart doctor used to say "Mr E is a mystery". With MDS you can't be certain how the "cards fell". Some people with MDS don't have the physical characteristics of DS but might have trouble with cognitive delays. OR the opposite can be true, they excel in school but maybe they have physical characteristics. There are people out in the world who have MDS but don't know it. Maybe they just needed extra help in math and had a hole in their heart, but nothing to raise a red flag and get doctors to run a genetic test.

I feel odd stating all these facts, but MDS sort of flies under the radar. Now to get to the more personal stuff. Ephraim's diagnosis has been nothing but a blessing. Can it be hard sometimes? YES! When he was younger, it was tough to see friend's babies hitting milestones like they should and E falling behind more and more.

But you know what!?!

It made the victory that much sweeter. When he FINALLY ate off of a spoon, I cried. While you friends of Susan don't know me, my friends know I am NOT one to cry at things. It was a huge deal. We worked so hard and for so long it was just awesome when it happened.

Ephraim is just 3.5 yrs old but so much has happened in that short amount of time. Awesome things, scary things, sad things, but most importantly GROWTH. Not just for E or me, but for those who surround us.

Ephraim attends preschool this year and he loves it. He speech is exploding. I love watching him do things I wasn't sure he would be able to do. Small things like walking in line correctly, sitting and doing his work, playing and interacting with his friends and teachers.

Three years ago, when I thought of the future I was afraid of not knowing what was coming next. Now (while I am still a planner/control freak haha), I am excited. Excited to see how E grows and the things he blows my mind with AND excited to see how I grow and change as well.

October, 2013 Down Syndrome Awareness... Day 13

It's late and I'm tired. Exhausted actually. It has been a full day.

I don't have anything life changing or new or fun or funny to share about Josh or Down Syndrome tonight.

So, until tomorrow... I'll leave you with a favorite picture.

Just Josh, enjoying the small things.