Saturday, June 27, 2009

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.

*****************************************************************************************
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.

Thursday, June 25, 2009

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!!

Wednesday, June 24, 2009

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...............

Wednesday, June 17, 2009

A BIG STEP FOR MOMMY..."AIM HIGH"

I have a limited time to write. Emmie is sleeping. Aidan gets home from preschool in less than an hour. I am feeling so much right now & want to get it out!

Last night I was "Googling" & I came across a local organization, the "Down Syndrome Aim High Resource Center." Only 3 miles from my house. The organization provides parent-to-parent professional services & support to individuals with Down Syndrome & their families. Perfect!!
Just what I need. Those of you that know me, know that I am a "go getter", always looking to learn something, a new endeavor, or just get some help along the way. On the website, I came across a link for the Aim High Calendar, filled with pictures of babies & children with Down Syndrome. Sweet little babies with welcoming & loving eyes. In those pictures I saw Emily. There was a form you could fill out for your child to be in the calendar. I didn't think twice. I downloaded the form & printed out a picture of Emily smiling. It felt right.

Today I decided that instead of mailing the form & photo to Aim High I would go there in person with Emily. I wanted to learn about the organization & what it has to offer. I also wanted to connect with other people in my situation. I pulled in the parking lot & I saw the sign, "Down Syndrome Research Center." It was surreal for me. Am I really here?? Deep breath.....

As I walked into the office, I felt empowered. I was doing this for me, my daughter & my family. In my opinion, there was no other way to start feeling better about Emily's diagnosis than to jump right in. I was greeted by two friendly women, Debbie & Diane. They were filled with smiles & hugs. Emily & I stayed for about a half hour. Both Debbie & Diane have daughters with Down Syndrome. They told me stories of when their daughters were born, how they felt, what their daughters are doing now. As we were talking, I kept looking at Debbie. There was something about her that felt comfortable & familiar. She looked & sounded just like my Aunt Jackie, my godmother. I felt like I was home.

I was telling Diane how I had all these dreams of Emily being a dancer like her mother. For those of you that don't know me, I am a dance teacher & have danced since the age of 3. Deep down inside there has been a part of me that wants that for Emily, but feels like it can't happen. At that moment, Diane pointed to a picture of a teenage girl dressed in a tutu & pointe shoes. It was Diane's daughter. Anything is possible!

I turned in the form for the calendar & they told me that the calendar is filled for 2010. So, Emily might be in the 2011 calendar. During our exchange, I looked on the table & there was one of those Dutch clogs, painted with beautiful flowers...not sure what the clogs are called...Welcome to Holland!!! :) I immediately felt at peace. Aim High offers playgroups, conferences, information & support. I feel so lucky to have found them. Before I left the office, the women gave me a book & lots of literature. The book is called, "Road Map to Holland." :)

This was a big step for me today. I feel like I can relax & start to accept our new life. It's ok. Different is ok. Emily is ok. I am ok. WE ARE OK.

Gotta run. Aidan's bus will be here any minute.

Sunday, June 14, 2009

WELCOME TO HOLLAND

I keep coming across this as I am doing my Down Syndrome research. Wanted to share. This expresses how we feel. Holland is beautiful...there is no other place I would rather be!

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Colosseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy.

All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

By Emily Perl Kingsley

Monday, June 8, 2009

THE NEXT STEP...EARLY INTERVENTION

Early Intervention is given to very young children with special needs, generally from birth until three years. Services include: speech therapy, occupational therapy & physical therapy & are provided either in an office or in the child's home. Our meetings & therapy sessions take place at home. The therapy is very family focused. We are familiar with Early Intervention because our son Aidan received Speech, Occupational Therapy & Special Education services from 15 months-3years.

The hope is that these services, provided early, will address any delays in development so that the child will not need services later on. At age 3, if a child still needs help, he or she might be referred to the school district for special-education preschool.

Today we met with Emily's Early Intervention team to discuss what services she will receive. She automatically qualifies because of her diagnosis. We are very fortunate to have the same case worker that we had with Aidan. It definitely helps that she is familiar with our family already.

Emily will receive the following services:
Speech: (Aidan's Speech Therapist) Therapy will focus on her feedings at this point. When she eats, Emily sometimes chokes & has trouble coordinating sucking, swallowing & breathing. We will meet with the therapist a few times a month.

Physical Therapy: We will work with a consultant a few times a month. She will check Emily's progress & provide services as needed.

Social Work: This is for Mom & Dad. At times, it is difficult to cope with Emily's diagnosis. At times it is easier than others. The social worker will provide counseling as needed.

Since Emily is only 2 months old, she is age appropriate. As she begins to develop, she may need more services, depending on her delays. Emily will also be seeing a Developmental Pediatrician as well as her regular pediatrician.

So, the journey continues with paperwork & appointments galore!! I can't live without my planner! I am so grateful that these services are available to Emily & our family. We want to give her everything we can to help her succeed & we believe the best time to start is now.

Friday, June 5, 2009

EMMIE'S CHECKUP

We took Emily for her 2 month check up today. She is doing great!! She weighs 10lbs, 1oz & is
22" long. When Emily was born we were told that her growth would be tracked on a chart for children with Down Syndrome. Because she is growing so well, she will be tracked on a chart for typical chilren, at least for now. :) A small victory!! :)

Emily got her first round of immuziations today. We talked to the doctor about an alternative schedule for Emily & she was very supportive. Emily got 2 shots instead of 6 today. Emily will get all of her immunizations, just a little more spread out. We are following the immuization schedule that is presented by Dr. Sears. We didn't feel comfortable bombarding Emily's little body with all of those chemicals. We feel very good about our decision & are grateful that Emmie's doctor is so supportive & accomodating. Emily will get more shots at 3 months & then at 4 months.

During our visit, we talked about illnesses/conditions that are common in children with Down Syndrome: respiratory infections, hypothyroidism, cataracts, celiac disease, diabetes, leukemia. It is overwhelming & frightening. It's hard to look at Emily & think that she could develop one of those conditions. The focus right now is that she is perfectly healthy. We don't know what the future will bring, so we focus on today.

We are off to Mema's for the weekend for Austin's 4th birthday party! Emily will be hanging out with the boys! :)

Wednesday, June 3, 2009

EMMIE TURNS 2 MONTHS OLD!!

Where did the time go?!?! It was 2 months ago today that Emily was born. I definitely remember that day! Here's an update on what Emmie is doing these days:

Emmie has started to smile. She smiles mostly in her sleep & mostly for Daddy. (She is definitely "Daddy's Little Girl"). I have caught her a few times & her smiles make me melt & bring tears of joy. There is nothing like it!

Her Mother's Day gift was rolling over (belly to back). I have only actually seen her do it once. I put her in her crib on her belly & when I peeked in on her minutes later, she was on her back.
Every time I grab the video camera, she won't do it. Why can't babies perform on demand?!?! :)

I feel so grateful today. I am grateful for every moment with Emily. I am grateful for every small accomplishment. I am grateful for my perfect family.

Tomorrow Emily will get her first round of shots. (More on that tomorrow) Aidan, Emily & I are off to a playdate with Spencer & Quentin!! Good times!! :)

Tuesday, June 2, 2009

GETTING EDUCATED

As Emily's mother I believe it is important for me to learn all I can about her disability. I feel like I need to be "armed" with information. "Knowing is half the battle", right? Before I continue my blog, I think it's important for you to have a clear understanding of what Down Syndrome is. I also want to add, feel free to ask us any questions at any time. I think some people feel uncomfortable about Emily's disability, mostly because they don't know what it is & how it will affect her life. Always ask!! It will help you understand & it will make us feel better.

Down Syndrome or Trisomy 21 is a chromosomal disorder caused by the presence of an extra 21st chromosome. Instead of 46, Emily has 47. This disorder usually casuses delay in physical, intellectual & language development. The cause of Down Syndrome is unknown. It is one of the most common birth defects. It is estimated that 1 in every 1,000 babies will have Down Syndrome. There is a wide variation in mental abilities, behavior and physical development in individuals with Down Syndrome. 30% - 50% of the individuals with Down Syndrome have heart defects and 8% - 12% have gastrointestinal tract abnormalities present at birth.

For a while Eric & I felt like we did something wrong, like we caused the Down Syndrome. I kept thinking I did something wrong during my pregnancy. That is clearly not the case, although it is hard to accept that. Talk about Mommy guilt!! We didn't do anything to cause the Down Syndrome, it just happened. I keep wanting to fix it & make it go away, but clearly that can't happen.

That's basically it. (If it were only that easy!) So, ask questions, google Down Syndrome, spread awareness....Most of all, just love Emily Grace like we do!! :)

Monday, June 1, 2009

NOT ALL BAD

By now, you might be reading this & thinking how sad & depressing. Believe me, I have my days when I feel like I can't do this. I cry, get angry & wonder how I will get through it. I often think, "Why me? Why Emily? Why our family?" Right now I don't have the answers, so, for now it's just the way it is. Perhaps we will find our answers along the way.

My best medicine is holding Emily & looking into her eyes. She gives me strength. She is such a special & sweet little girl. Emily is the picture of grace & innocence. She melts me every time she is in my arms. I feel guilty when I don't hold her all day or if someone else holds her. I want her all to myself!! :)

We are still coping with Emily's Down Syndrome diagnonis. There are days when I feel like I can't go through this for her entire life. Some days I feel very depressed & like I can't keep fighting. All in all, we are doing fine. We adore Emily. We laugh at her, snuggle & cuddle her. It is amazing to see Emily & Aidan together. The feeling of seeing my 2 children together is indescribable. Aidan loves his little sister. Every day when he gets off the bus from preschool his first question is, "Where is Baby Emily?" He goes right to her & gives her a big kiss. He helps give her bottles & wants to hold & kiss her. It is very sweet.

In the end, this experience is not all bad. I didn't want everyone reading this & thinking we are moping about our house, crying. We go through our day to day like everyone else. We enjoy our children every day. We know that good will come of this experience. Emily is going to change our lives in ways we never knew. I do my best to embrace that.