EMMIE LEARNS A NEW LANGUAGE

Tonight Emily & I attended our first Sign Language class. The class was held at the
Down Syndrome Aim High Resource Center. When I first heard about the class, I immediately signed us up. I know some Sign Language from when Aidan went through Early Intervention, but I thought I could use some refreshing. I was excited to learn something new, but I also felt a little hesitant knowing I would be surrounded by all of the babies with Down Syndrome & their parents. This made me a little uneasy because when I attended the play date a few weeks ago, it really shook me up. It took me days to feel better. Sometimes it's that reality looking right in the face that kills. Well, about fifteen minutes before the class started, Emily & I packed up & headed to the Center. "Here we go", I thought.


When I pulled into the parking lot I was talking to my sister on my cell phone so that distracted me. (Of course, I was using my headset!) When I walked into the Center, I felt really comfortable. Right away I was greeted by Debbie. I met Debbie when I first visited the Center. She reminds me so much of my Aunt Jackie. She feels familiar & put me at ease. Everyone there was so friendly & welcoming. I remembered most of them from the recent play date. I sat down with Emmie & got situated. I felt empowered because I was going to learn something that will help Emily communicate & it will help us communicate with her. Emmie may have a speech delay at some point or need help communicating, so it felt really good to jump right in & learn.

A few minutes later, my new friend Sheila walked in with her husband. Her daughter is a month older than Emily. We connected at the play date & have been emailing back & forth. When I saw her I thought, "There's my friend. She understands exactly how I feel & what this journey is like." I felt a sense of relief.

The class started & we learned many new Signs...."Mommy", "Daddy", "More", "Hello", etc. We also learned some songs & the Alphabet. We learned how to sign someone's name. You sign the first initial of the person's name. So, "E" for "Emily". Then you sign something that is a characteristic of that person or some term of endearment, like a kiss or a heart or the eyes for the person's beautiful eyes. I can't wait to come up with a sign for Emily! :)

Let me tell you about all of the beautiful babies I saw!!! Oh my gosh!!! They were all so beautiful!! Emmie was the youngest & I think the oldest was 2 years old. Their sweet faces!! They were smiling, clapping, crawling, & walking. Emily laid on the floor, wiggled around, kicked her legs, then she spit up all over her blanket. :) All of these babies were filled with life & joy, like any other baby. I sang to Emily & signed to her. She kept watching the instructor & cooing. My Emmie Grace...my heart...my soul...

The class was great. I am SO GLAD we went!! It wasn't hard to be with the group. It was comfortable & fun. I am really looking forward to the next class. I can't wait to show Aidan the Signs. He will love that! He learns Sign Language at his preschool & I know he will love "talking" to his sister. My Aidan Michael.....also my heart...my soul......I have to tell you about my boy!

That will be my next entry. Time for bed. It was a busy day for me & Emmie. We did a mystery shop. (Valet Parking at the hospital! :)) This is one of my crazy side jobs. We also went to buy a double stroller so Aidan & Emily can sit together & go for walks. We went to the store three different times in order to pick the right one!!

As always, thank you for reading!

FIND YOUR ESCAPE

I am writing this entry for all the moms who have a child with Down Syndrome, however, it really does pertain to everyone. I can't stress enough the importance of finding your escape from the sadness & madness. Yes, sometimes I feel like I am going insane from this crazy life I am living!! How the hell did I get here?!?!?! Even if you don't have a child with Down Syndrome, you know exactly what I am talking about. Believe me, I don't mope around the house because my daughter has Down Syndrome, but it does get to be a little much sometimes on top of everything else.

I find the crazier things get, the more I need an escape. I need something to get me out of reality for a while. We all need that. I can't ever forget what is going on in my life, but a little peace here & there, really helps me. For me, it's working out at the gym, listening to music & singing like a rock star (yes, I am the next American Idol! :)), taking a drive by myself with the radio cranked up, meeting a girlfriend for dinner, gardening, blogging. Sometimes I just sit & enjoy the silence. Right now I am typing downstairs in the office & the peace is wonderful. I feel refreshed after I blog. It feels good to get everything out & to hear such wonderful feedback from all of you.

These things & others take me away from everything that is going on & I cherish them. These days, I find these times are few & far between. I grab them when I can & get lost. With two children with special needs, it is so easy for me to get caught up with pediatrician appointments, developmental pediatrician appointments, phone calls, scheduling Emmie's therapy sessions, attending Emmie's therapy sessions, catching up with my son's teachers, researching special needs, finding resources.....at times it does take over my life!! This is all on top of my regular wife & mommy duties!! Having typical children is very busy & chaotic. Having children with special needs adds another layer. Aidan & Emmie are my world & I do everything I can to better myself as their parent & to better their lives. It is constant! Sometimes I think it would be easier to just let things slide, but that's not good enough. My children need me &t hey deserve better. I am their voice, their advocate. I will not quit.

So, to the Mommies.....Read a book, go for a walk, call a girlfriend, go shopping...
FIND YOUR ESCAPE!! Get away from all the information & every day craziness. You deserve it!!

Going to bed. My afternoon latte is wearing off. Good Night!

SMILING EMMIE :)

Emily smiled for most of the day today. She is such a happy little girl. She has discovered our ceiling fan in the living room & she can't stop smiling when it's on. I came back from the gym tonight & Eric called me into the living room. Emily was staring up at the ceiling fan, watching it spin around. She was smiling non stop! It was the sweetest! I am not sure if the breeze was tickling her face or if she just loves how it looks when it spins. She was also cooing. I have to get it on video. She melts me.

That's my Emmie. Pure Joy. All of the time. Every day Emily reminds me to stop & appreciate what I have in my life. It's so easy to get caught up in the every day: bills, laundry, a tantruming
3 year old, cooking, cleaning, appointments, etc. The simplest thing like Emmie's smile makes all the difference. It is infectious.

So, stop what you are doing. Take a look around. Appreciate what you have....& SMILE!!! :)

I am cutting this short tonight. Just got back from the gym & I am wiped out.

Good night!

PUNKIN? MONKEY?

We have so many nicknames for Emily.
Emmie
Emmie Grace...Aidan's favorite
Emmie Gracie Girl
Emmie Girl
Pretty Girl
Mommy's Girl
Baby Girl
Gracie Girl...Mommy's favorite
Little Girl
*All of my nicknames have "girl" attached to them. I have no idea why!
Little Bear
Monkey...Daddy's favorite
Punkin
Sweetcakes
Angel

What will we come up with next?

WE ARE SO IN LOVE OUR LITTLE GIRL!! Can you tell? :)

**Emmie gets her 3 month shots tomorrow. Not looking forward to that.

TRIPLE PLAYDATE

Triple Play is a playgroup for babies/young children with Down syndrome. It's a chance for the parents to get together & share ideas, stories, vent & for the kids to play. When I heard about the group through Aim High, I thought it was a wonderful idea. Triple Play would be perfect for us. Emily can be with other babies that are just like her & I can be with other moms that have the same feelings I do. I was excited, but hesitant because I didn't know how it would make me feel. How would I feel being in a room filled with babies with Down syndrome? Reality right in my face....again!!


I decided to go. Emily & Aidan went with me. There were about 10 moms there with their babies. I was welcomed with open arms. I shared my story with some moms & they shared theirs. Many had no idea their baby had Down syndrome until their baby was born. I could relate to the shock. We talked about many different topics: Heart defects, Cardiologists,
Early Intervention, Developmental Pediatrician, Sign Language, Speech Therapy, Physical Therapy, Special Education.....The list goes on & on. My vocabulary is growing. Can I learn a different vocabulary please?


All of the babies were beautiful!!!!! Many looked like Emily with the typical Down syndrome characteristics. A few did not look like Emily at all. It was heartbreaking to look at the babies & think about what challenges they may have in life. It was heartbreaking to look at my Emmie & realize that she is now a part of this group. She is going to have challenges in her life. This is not what I dreamed about while I was pregnant. I never thought I would be a part of this "club". Sigh....


I enjoyed the company of the other moms & I appreicated their stories, their strength & positive attitude. I left the playdate with mixed feelings. I felt so grateful to have a place to go where everyone understands. On the other hand, I felt so sad. I don't want to go on this journey. It breaks my heart sometimes. Why can't my child be normal? Why does she have to look that way? Why does she have to have challenges? We already have a child with special needs. Why another one? It makes me angry!!!!! Why did God give us Emily this way? I know, I know....We are the perfect family to care for her. We are strong & we can help her. She will make a difference in our lives & the people around us. People with Down syndrome are so happy & so special. Emily will make you a better person. You are strong, Lacey. Your can handle it. Blah, blah, blah...I've heard it all. Yes, I believe those things, but sometimes it's just not what I want to hear. The people saying those things have their normal/typical kids. It's easy for them to say those things because they don't have to live this life. I know everyone means well & sometimes people just don't know what else to say. Thanks, but no thanks. Let me have my pity party please, at least for today.


I spent the rest of the day feeling mostly sad. I felt sad for Emily & the challenges she will face. I felt sad for her because people will probably make fun of her & the way she looks & acts. I felt sad because life shouldn't be so hard for her. I felt sad for us as a family & that we have to take this path in life. I felt sad for Aidan because his only sibling has Down syndrome & he will never know what it's like to have a normal sibling. I just felt sad.


Sometimes I just need to feel sad. I need to feel sad & mad in order to feel happy again. I need to let myself feel those dark feelings. It makes me feel better later on. Some of what I am writing may seem harsh, but it's real. I can't pretend like those thoughts don't exist. My daughter Emily has Down syndrome. It's not what I wanted for my beautiful daughter. I am scared, angry, disappointed. I didn't ask for this. If I could, I would take the Down syndrome away from her,. Would I, really? If I did, then Emily would not be Emily. I love Emily. Another sigh.....We'll get through this. It's just another part of the rollercoaster ride. Tomorrow is another day & we will take it one step at a time.

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Down Syndrome Creed

My face may be different but my feelings the same.

I laugh and I cry. I take pride in my gains.

I was sent here among you to teach you to love
as God in the Heavens looks down from above.

To Him I’m no different; His love knows no bounds.

It’s those here among you in cities and towns
that judge me by standards that man has imparted.

But the family he’s chosen will help me get started.

For I’m one of His children so special and few
that came here to learn the same lessons as you.

That love is acceptance; it must come from the heart.
We all have the same purpose though not the same start.

The Lord gave me life to live and embrace.

And I’ll do it as you do - just at my own pace.

THANK YOU!!!

I want to take some time to thank anyone that is reading my blog...Family, friends, co-workers, Facebook friends, Aim High members. You are all so important to us & have helped to make this journey a little easier. Your support is greatly appreciated & truly makes a difference.

Most of you I know & are so involved in our life. Some of you are strangers & I only know you from the computer. We are all connected somehow. There are moms reading this from all over the country! There are moms that have a child with DS that are years older than Emmie. You give me hope. There are also moms just learning of their child's DS diagnosis. I want to give you hope & tell you that I understand & that it will be ok. Hugs to you!!

So, thanks to each & every one of you that has taken the time to read our story. Thank you for your emails, phone calls, hugs, cards, books, etc. We are grateful!! My goal for this blog is to share our story & keep everyone up to date on Emily's progress. I also want to reach out to other's going through this experience. If I can help one other mom realize that DS is only a different life & not an end to life, I have made a difference.

THANK YOU!!

SO MUCH TO SAY...WHERE TO BEGIN?

I am trying to write this entry & having major difficulties. I have rewritten it several times & feel like I am all over the place. I don't know where to begin. I have so much to say about Emily's therapy, Aidan with Emmie, Emmie swimming, my encounters with people with DS, people's reactions to Emily's diagnosis, etc. These are all great topics for blog entries. I am learning that I need to blog more, but haven't been able to find the time.

This afternoon I went to workout at the gym....I so needed it...mentally & phsycially!! :) The gym has become my "haven". It's a place where I can go to get away from life for a while & get
"in the zone." My ipod takes me away from everything for just a little while & the focus is 100% me...that doesn't happen much these days. After my 30 minutes of cardio, I started to do some weights. In between sets, I usually walk around the gym & I usually take a look into the swimming pool down below. I watch the people swim, reflect on things in my life & think of Aidan & how much he loves swimming there.

Today as I was looking into the pool & I noticed a little boy swimming by himself. He was kicking, doing flips, jumping up & down, having a great time. The boy clearly had Down syndrome. (By the way, I have learned that the "S" in "syndrome" is lower case, not upper case.) I have been telling several of you my stories about me seeing more & more children with Down syndrome since Emily's diagnosis. Everywhere I look, I see a child with Down syndrome...The little boy in the restaurant with his parents, the little girl at the playground with her mom, the little girl on the cover of the book at the bookstore, the girl at my friend's baby shower, the teenage boy working at Panera, and now the boy swimming in the pool. I can't seem to escape it. Maybe I am just noticing it more? Not sure.

Prior to the boy swimming the pool, everytime I saw a child with Down syndrome, I physically felt sick to my stomach! I felt like I couldn't breathe, like my chest was being crushed. I feel awful saying that, but it's true. Seeing those people put the harsh reality in my face. Down syndrome is my reality. This is what my precious daughter will be like. It's tough to swallow that. Let's face it...no one wants their child to look different than all the other kids. We all want beautiful, perfect children. This has been hard for me to get over. It sounds so superficial & I feel like a terrible mother for saying that, but I have to be honest. My new friends at AIM HIGH told me to feel whatever I need to feel & not to feel guilty about it. I am working on it. I know that Emily is beautiful & perfect in her own way. It's hard to accept that.

A friend & I were talking one day & she told me that every time I see a person/child with Down syndrome it is God's way of saying that it's ok. It's ok that Emily is different. It's evidence that there are tons of families out there with children with Down syndrome & they are happy & have completely normal lives. Little did I know that each person I saw with Down syndrome was bringing me closer to acceptance.

The joy on the boy's face was overwhelming. He was so happy & proud of himself. For the first time in quite a while, I was able to look at him & not feel sad or scared. Today I felt peace. All I could think about was my little girl...Emmie...she has my heart & soul. I don't care what she looks like or how different she is from anyone else. Her life may be filled with challenges, but I am going to be there supporting her every step of the way. I want her to have that same happiness as the boy in the swimming pool.

I feel like I could say so much more, but I am tired & hungry for my night time snack. :) I also hear Eric upstairs talking to Emily. He is telling her "I love you". He is laughing. She must be smiling. That's my girl...............