Wednesday, November 25, 2009

BABBA DADDA.... YAY!! :)

Emmie has started babbling..."Babba, Dadda." It s the sweetest sound. She doesn't do it very often, but when she does, I can't get enough. She has a quiet, girly voice. I feel like this is a victory for Em. I have been working so hard with her......imitating sounds, talking & singing to her, encouraging her to make sounds & waiting for her to do something back, other than grunting & groaning. It is harder for her because her muscles are weaker due to the low muscle tone. Emmie is teaching me that it will all come in time. It's ok if things come slower & later to her. She will get there.

FYI...Emmie has learned how to take her socks off. She plays with her feet/toes, we call them "piggies" & takes her socks off, then plays with her feet. In 2 days, we have lost 2 socks!! I think we lost one in the mall today. :)

I want to wish you all a Happy Thanksgiving! I am feeling a little under the weather, not sure what it is, but I am managing. We will be traveling to my parents' cabin for the long weekend. We will see my family & Eric's family as well. Aidan is all excited. He will be bringing a "centerpiece." A turkey made from a paper lunchbag that will decorate the dinner table. :) I love my boy! What am I grateful for this Thanksgiving? My husband & our beautiful children, our health, a cozy home, supportive & loving parents, money in the bank, hugs, kisses & sweet words from Aidan, Emmie's gentle smile & the progress she has made. So much to be grateful for! Count your blessings!

HAPPY THANKSGIVING!!

Saturday, November 14, 2009

WHAT'S EMMIE UP TO?

Emmie is now 7 & 1/2 months old & she is doing so well. She rolls over from back to belly & belly to back. Lately she tries so hard to scoot herself forward on her belly. This girl wants to crawl!! She puts her tushy up in the air & tries to push forward with her legs. She gets tired & then drops her upper body to the ground. It seems as though her upper body is weaker than her lower body.


Emmie is sitting up for the most part. She loses her balance pretty easily & falls over. She prefers to be sitting up rather than laying down. I get the feeling she thinks she is missing out on something! Emmie is still very quiet. She barely makes any noise & I hardly ever hear her cry. Sometimes I want her to make noise like a typical baby so badly, but then I step back & tell myself that it will all come in time. She will coo & giggle & talk eventually, it will just take her a little bit longer. That is fine with me. Emmie has definitely mastered the art of raspberries!! :)
Once in a while she will make grunting & groaning noises & usually makes noises with her mouth closed. She loves having her hands together in the praying position. I feel like we need alot of prayers these days!! This is a great position for her, bringing her arms to midline, her therapists call it. This positon helps Emmie increase her muscle tone.

Feedings are going so much better. So far Emmie has tried: peaches, pears, applesauce, bananas, green beans, avocado, peas, sweet potatoes, squash....it's all homemade by me & Aidan. He loves that job! For a while, it seemed like we were moving forward with eating solids & then moving backwards, but lately she seems to be doing ok. Her tongue thrust isn't so bad & it seems like positioning is key for her. I also use feeding time as time to do some speech exercises & oral stimulation: making different sounds, sticking my tongue in & out,rubbing her cheeks, using a bristle brush to play with her tongue & lips...anything to get her muscles going.


Emmie lights up when she sees Aidan. They are best buddies! As Aidan puts it, "We are best friends!" Emmie looks right at Aidan & gives the biggest smile. She loves her big brother! She is a lucky girl to have such a good big brother. He will "keep her safe" & give her so much love. We have started a nightly tradition. Every night we all do story time together. We read 3 or 4 books & Emmie is very interested. She looks at the pictures & touches the pages. Then Aidan gets in his bed & I put Emmie right next to him. He wants snuggle time with her & she seems to love the attention. He kisses her goodnight & tells her that he loves her. t is very sweet. I bought Aidan a mini Christmas tree the other day ($1at Target) & I have to make sure that is plugged in before I take Emmie out of his bed. It is these moments that make me so proud to be Aidan & Emmie's Mommy.

Emmie's bottle is ready. After she eats, I am taking the kids swimming....Am I out of my mind?!?!?!?! The weekends are the hardest....trying to keep us all occupied & make the time go faster. I am looking forward to bedtime.



Eric will be home in 1 week!! YAY!! :)

Thursday, November 12, 2009

CONNECTIONS...A MOMENT

Wanted to share this story....Emmie's speech therapist, Roberta attended the Buddy Walk with her son, Kevin. Kevin is getting ready to make his Bar Mitzvah & is doing a special project at his temple. Kevin was so touched by the children he saw at the Walk that he decided to make Down syndrome a part of his project. He came up with the idea to organize bottle & can drives at his school & temple. The money raised will go to the Down Syndrome Aim High Resource Center in Albany, NY. This organization puts on the Albany Buddy Walk & has been our saving grace....well after our Emmie Grace! :) Kevin decided to also use this as an opportunity to educate others about Down syndrome. He is going to create a flyer with facts about Down syndrome. He will also include a picture of Emily. :) Emily has already had her photoshoot with Kevin. Roberta told me today that Kevin made a Tshirt with a picture of Emily on it. He will wear it when he talks to his classmates about the project.

Kevin's father, Mike owns a bottle/can redemption center. If you are in the Albany area, you can drop off your bottles/cans & you can tell Mike that you want the money to go to Aim High. Aim High is also collecting bottles/cans.

This is a full circle moment for me. We have come so far on this journey. Emily is 7 months old & so much has happened. It is amazing!! We have accepted her diagnosis & have fully embraced her & our new life. Life is better because of Emmie. I feel like Emily is helping us reach out to others to make a difference & we are giving back. We are touching lives, getting the word out about Down syndrome & educating. That's part of Emily's purpose I think & she is giving me a purpose. My girl.......

Time to snuggle Em & wait for Aidan to get off the bus. We are headed to the park for a playdate. Getting through another day....with joy!!! :)




Tuesday, November 10, 2009

UPDATE

Yesterday my mom & I took Emily to the opthamologist for a check up. I have been noticing her left eye turning in & I wanted to get it checked out & have some peace of mind. My mom came up to go with me, since Eric is away & I was grateful to have her with me. Emmie's eye is fine. It appears as though the eye is turning in, but it's not. The technical term for it is "Pseudostrabismus," false appearance of crossed eyes. This often occurs in infants whose facial features are not fully developed. The bridge of Emmie's nose is wide & flat. As Emmie gets older, the bridge will narrow & the folds in the corner of the eye will go away. This will cause the eye to appear wider & not have the appearance of a crossed eye. Emmie will go back in 6 months for another check up. The dr. did say she appears to be more farsighted that a typical child at her age.It is amazing to me that the dr. was able to figure that out when Emmie is only 7 months old. Because of the Down syndrome & family history of eye problems, Emmie will most likely need glasses. I had a crossed eye when I was younger & wore a patch over one eye. I am also severely farsighted. My mother had a crossed eye also & had surgery to correct the problem. This is all very minor. Whatever happens, we will deal with it & get Emmie the help she needs. I am so happy the appointment went well. The dr. was very helpful & gave us alot of good information.

Yesterday Eric got word that he will definitely be deployed in early December. Currently, he is Alabama for training. He will return a few days before Thanksgiving & leave for Washington state in early December for more training. Then he will head to Kuwait for a year. Part of his duty will require him to do work at the US Embassy in Baghdad, Iraq. The news hit us both very hard. There was a slight possibility that the unit would not be deployed. We were holding onto that. Right now, we are doing our best to support each other. We have alot to get in place before Eric leaves. I am nervous, scared, sad, angry...the emotions keep coming. My heart breaks for Aidan. This will be Aidan's 2nd year without his Daddy. Aidan is so attached to Eric. Aidan & Emmie are so lucky to have a father that is so loving & involved, but that will make it so much harder.

I could go on & on about this, but there is no point. The situation is what it is & now we have to deal with it the best we can. Deep down, I do believe that there will be good from this situation, I just can't see it yet. I am asking you all to pray for our family.....our health, Eric's safety, Aidan & Emmie, my strength...we are going to need it. Hold on tight to your families, appreciate every moment. Also, please remember the veterans & their families tomorrow on Veteran's Day.

Thank you all for your thoughts & prayers. I am finding the joy every day! :)

Thursday, November 5, 2009

OUR LIFE

I apologize for not blogging in a while. Life has been very crazy, it's hard to keep up sometimes. Eric was away for 2 months. He came back, then left again for 2 weeks. He got back last week & he is leaving this weekend for 2 more weeks!! This is all very unexpected. It is mentally draining. It is hard to adjust...first he's here, then gone, then here, then gone....it's alot for me.
While Eric is away he will get the final word on his deployment. If his unit is deployed, they will leave in early December. We were originally told they would leave at the end of January.

Many of you ask, "Lacey, how do you do it?" The only answer I have is, "I just do." I am not happy about it, but this is my family & I will do everything I can to keep it together. I do my best to understand Eric's passion for the military & support him. It is not easy!! It is hard being alone, taking care of 2 special needs children, taking care of the house, paying bills, etc. I think the loneliness is the worst. Some days I get stuck in the sadness & it's hard to move out of it, but I try to find a little piece of joy every day. I don't have to look very far. A very special boy & a very special girl remind me of the happiness & love I have in my life.

So, that's the latest from the Lautenschlagers! :) Crazy, chaotic, emotional, stressful, joyful & loving...that's our life!!


Find the joy......

Monday, October 26, 2009

DID YOU KNOW?

Children with Down syndrome may receive Early Intervention Services. This refers to an array of specialized programs and related resources that are made available by health care professionals to the child with Down syndrome. These health care professionals may include special educators, speech therapists, occupational therapists, social workers, & physical therapists.

All is well here. Eric is due home sometime today. Finally, we can settle it as a family again. Aidan is very excited. He wants to make Daddy a cake when he gets home from school today. He also wants Daddy to take him on a city bus & take him for a ride in one of the "Army jeeps." Big plans! I am relieved that the 2 months are officially over now. I feel like I can finally exhale & relax. The past few months have been lonely, stressful & exhausting. I am excited for the kids to have their Daddy back & I am grateful to have my partner back.

Gotta run. Aidan will be getting off the school bus any minute!

Life is good..........

Thursday, October 22, 2009

INTERESTING FACT

People with Down syndrome often have lowered general immunity compared to the general population. This means that they may be more susceptible to infections & common ailments, especially in early childhood.

Life is cazy here! I haven't really had the time to focus on my blog like I would like to. Eric will be home in 4 days. Once life is somewhat back to normal, I am hoping to spend more time blogging. I have lots to say!!

Off to take a Zumba class at the gym!

Don't forget...It's still National Down Syndrome Awareness Month!! :)

Tuesday, October 20, 2009

MOMMY'S SPREADING THE NEWS

Researchers are making great strides in identifying the genes on Chromosome 21 that cause the characteristics of Down syndrome. Many feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.


I only have a moment to write, but I wanted to make this entry. I was on Facebook this morning & I saw that one of my "friends" took the "How Retarded Are You?" Quiz. I was shocked to see that there was such a thing. This "friend" was only someone I went to school with, not someone I would truly call a "friend". I know it's all in fun, but come on. I find it very offensive. That comment offends so many people & it could possibly include my daughter! I know, I have become the Mommy with a cause, the one who won't shut up, the one who looks for the meaning in everything, the one who is always fighting, standing up for her children...so be it. I am proud of who I am & what I am fighting for. I intend to contact Facebook to try to get rid of that Quiz. Someone has to step up, right? It might as well be Emmie's Mommy! :)

Any thoughts on this? Gotta run. Emmie's crying & the therapist will be here any minute.

I AM CELEBRATING NATIONAL DOWN SYNDROME AWARENESS MONTH!!

Sunday, October 18, 2009

NATIONAL DOWN SYNDROME AWARENESS MONTH

Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.

Saturday, October 17, 2009

DID YOU KNOW?

All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.

Friday, October 16, 2009

SPREADING AWARENESS...

People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.

Thursday, October 15, 2009

ANOTHER FACT

Life expectancy for people with Down syndrome has increased dramatically in recent decades---from 25 in 1983 to 60 today.



Celebrate National Down Syndrome Awareness Month!! I am!! :)
Love you, Emmie Grace XOXOXOXOX

Wednesday, October 14, 2009

MORE TO SHARE

A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.

A busy day for me & Emmie. She has physical therapy,then we are meeting Aunt Becca & her daughter Hailey for lunch. Tonight a sitter is coming to watch the kids & I am going to a seminar at Aim High...Special Care Planning. Looking forward to getting more information & seeing my friends!! Time to get some chili in the crockpot....it's the perfect day for it.

HAPPY DOWN SYNDROME AWARENESS MONTH!! :)

Tuesday, October 13, 2009

MORE TO SHARE

People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.


Monday, October 12, 2009

DID YOU KNOW....

The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women under 35 years of age.

The kdis & I just got back from camping with Mema & Papa. We had a good time as always. Eric left yesterday for 2 weeks. This was unexpected. He is at Ft. Drum. I am glad he is close to home. Somehow it makes it a little easier. I hope Aidan has an easier time during the next 2 weeks.

Saturday, October 10, 2009

ANOTHER FACT TO SHARE

There are more than 400,000 people living with Down syndrome in the
United States.

I am proud to say that one of them is my daughter, Emily Grace.

Love you, Emmie. XOXOXOXOXOXOX

Friday, October 9, 2009

DID YOU KNOW?

Down syndrome is the most commonly occurring chromosomal condition. One in every 733 babies is born with Down syndrome.

Last night Emmie was trying so hard to sit up. What a big girl! She was able to keep her balance for a very short time, then she would fall over. She enjoys sitting up & I love seeing her like that. I am working on getting a picture of it. Speaking of pictures, I really need to update my blog pics. I'll add it to my "to do" list. :)

Emmie tried bananas this morning & loved them!!

I am off to the gym in a little bit. This will be Emmie's first day attending the daycare at the gym. Their policy is that the kids need to be 6 months old & sitting up. After thinking about this & knowing that Emmie may not sit up for a while, I saw this as an opportunity to speak up. I called the front desk & asked about their daycare policy & the woman could not give me a clear cut answer as to why they have that policy. She referred me to the director. The director said it was for safety reasons so that the older kids won't hurt the babies. Whatever! I proudly stated, "My daughter has Down syndrome & she may not sit up for quite some time." After a brief conversation, the director said they would make an exception. It felt good to speak up for Emmie & to say that she has Down syndrome without feeling ashamed or embarrassed. She is my girl no matter what & I will continue to stand up for her.





Thursday, October 8, 2009

SPREADING AWARENESS...National Down Syndrome Awareness Month

October is National Down Syndrome Awareness Month & this Mommy is spreading the news!! This month I will be posting facts about Down syndrome & getting the word out there. It is important for me to give people the correct information. There are many misconceptions out there about Down syndrome & I want to share the truths that we have discovered so far.

Also....Feel free to ask any question about Down syndrome. This is the perfect time...Down Syndrome Awareness Month. There are no stupid questions. Here are some examples:
What causes it? What is life like with Emmie? Would you ever...? What has been...?
I am certainly not an expert, I am learning myself. I will do my best to answer you or find the answer for you.

Down syndrome occurs when an individual has three, rather than two copies of the twenty-first chromosome. This additional genetic material alters the course of development & causes the characteristics associated with Down syndrome.

HAPPY DOWN SYNDROME AWARENESS MONTH!! :)

Tuesday, October 6, 2009

EMMIE'S 6 MONTH CHECK UP

Where has the time gone?! Emmie turned 6 months on October 4..unbelievable!! Everyone says things go faster with the 2nd child...they weren't kidding! Emmie's appoinment went very well. She now weighs 14lbs, 14oz & is 25 1/2" long. She also got her shots...her 6 month shots & the flu shot. She took them like a champ!! Daddy was there to comfort his little girl. Emmie did not make a peep! Such a brave little girl. She did not get the swine flu shot. The office did not have any & we are somewhat concerned about it because it is so new. Not sure what we are going to do about that yet. Emmie is at high risk because of having low immunity from Down syndrome. It is important for her to get immunized, but I have some concerns.

Emmie is eating well. She is on solids now & eats cereal, peas, green beans, avocado, pears, applesauce. I make the food myself. It is something Aidan really enjoys helping out with. We use a food mill (Thank you, Julie!) & then freeze the food in small cubes. They come in very handy. For a while, Emmie was having trouble with feedings. At times, she would thrust her tongue out, which forces the food out. I was very concerned about this, but after a Speech session with Roberta, I feel much more confident. It is important to make sure that Emily is in an upright position when she is eating. The more she slouches, the worse the tongue thrusting is. I see a big difference when we pay attention to her positioning.

We will be taking Emily to a pediatric opthamologist. We want to get her eyes checked because from time to time we notice her left eye turning in. It doesn't happen alot, but I would rather get it checked & have peace of mind.

All is well. Emmie will go back to the dr. at 8 months for more shots. ugh! I feel awful putting all of this crap into her body, but I know it is protecting her. We will decide on the swine flu shot within the next few months. As always, we are grateful for our healthy little girl.
Time to feed Emmie!

Monday, October 5, 2009

THE WALK....Capital Region Buddy Walk

Here I am!! Finally blogging again!! :) Eric got home on Saturday & I am so relieved that the 2 months are over. I don't know how I survived it!! Aidan & Emmie were my life!! I know all children are their mother's life 24/7, but this was intense!! I am so grateful for my family & friends....you all kept me going. Talks on the phone, playdates, dinners, encouraging words...you are all the best!! Here I am, still standing. Once again, we are a family.

Eric got home just in time for us to participate in our very first Buddy Walk. The Capital Region Buddy Walk was held on Sunday, October 4 in Central Park, Schenectady, NY. It was a one-mile inspirational walk that aims to promote acceptance & inclusion of all people with Down syndrome by inviting the surrounding community to learn more & to ultimately embrace the individuality of their neighbors. The event was organized by my friends at the Down Sydrome Aim High Resource Center (DSAHRC). It was a fundraiser for the Center which provides valuable services to Capital Region families. The Center has done so much for us. We wanted to give back.

At first, I was a little hesitant to go to the walk. I was afraid how the day would affect me. At times, I have the tendency to focus on Emily future instead of the here & now. I thought seeing the older children with Down syndrome would be overwhelming for me. I was wrong!! I feel like I am really starting to embrace this new life of ours. The actual "walk" was empowering. I held Emmie close to me as I walked. It felt so good to look around & see so many people supporting us. We were surrounded by love!! Our family & friends were there to support us & it couldn't have been better! I got to see my friends Sheila & Debbie from the Resource Center & it felt so good. These people have become so important to me. They are like family.

The day of the walk, October 4, was Emily's 6 month birthday, which made it even more perfect! When Aidan was 6 months old, I threw him a 1/2 birthday party. He had a monkey cake, because I thought he looked like a little monkey. His ears stuck out like Curious George. :) We had a small 1/2 birthday party for Emmie. Her theme was butterflies. The buttefly is an important symbol to the Down syndrome community. The
metamorphosis of the caterpillar into a butterfly symbolizes the potential of people with Down syndrome. (More on the butterfly in another entry.) Emmie had a great party! It is hard to believe my little girl is 6 months old already. Time is flying by! I am trying to enjoy this journey & live in the moment as much as possible.
It was a whirlwind weekend! So much excitement! As I write this, I can hear Aidan talking to his Daddy. I don't know what they are talking about, but it sounds good to me. Life is good!

Wednesday, September 9, 2009

THE LATEST

Eric came home this weekend & it was so nice to be a family again. The kids went to the airport in their jammies. Aidan ran to Daddy when he saw him. It was a nice reunion!! Lots of hugs, kisses, & tears. Before Eric got home, he sent me flowers & a thoughtful card....it's the simple things that mean so much. We took the kids to an amusement park, went to the beach for a picnic, played at the park. I felt whole this weekend. It's been a while since I felt that way.
Saying goodbye yesterday was really hard for all of us. We reassured Aidan that Daddy will be back. I hope he will be ok. We have 3 &1/2 weeks to go & I am hoping it flies by.

Emmie is doing great!! She is eating cereal & she loves it!! She's just like her Mommy. She loves to eat! :) Pretty soon we will start introducing other foods. I can't wait! Emily's PT has increased to 1x/week. We learned some new exercises from Jill today...more work on the ball & tips for strengthening her back, shoulder muscles. I love these sessions with Jill. I learn so much.
Emmie will be adding Special Education to her Physical & Speech therapies. I am not sure how often she will have it or what specifically the therapist will do. We will be working with the same therapist Aidan had. We are so lucky to be working with Sandra!!

Took Emmie to the dr. yesterday. She had some blood in her poop. I was very nervous about it, but the dr. said it was from constipation, straining & pushing. She also has a slight tear. We will give her medicine 1x/day to help. It's similar to a laxative, but not as extreme. Emmie also got her 5 month shots. She cried a little bit, but big brother was there to comfort her. "It's ok Emmie. That's my girl". My kids are so special!! Aidan also got his flu shot. He was very brave. He is still admiring his band-aid. :)

Gotta run. I am making blueberry muffins for Aidan. Today was his 1st day back to pre-school. My mom always made me cupcakes on my 1st day of school. I am passing on the tradition, but adding a new twist. Aidan & I always bake blueberry muffins together, so I thought I would surprise him with a special treat when he gets home.

Thank you to everyone for your supportive emails & phone calls. We are doing fine & getting through. As always, one step at a time.....

Thursday, September 3, 2009

ULTRASOUND RESULTS

I took Emmie for her ultrasound today at Albany Medical Center. Emmie was a great patient....so calm & peaceful. The radiologist said that everything looks normal!!! YAY!!! :) I couldn't be happier about it. We haven't talked to Emmie's pediatrician yet, but I am sure we will need to keep an eye on this. I am glad the developmental pediatrician was cautious & sent us for the ultrasoud. It's better to get it checked.

Thank you all for your good thoughts & support.

I am grateful for good health, a wonderful, supprtive family & great friends. We couldn't get through without all of you.

Eric comes home tomorrow night. We are all excited! He comes in late at night, so the kids will be going to their airport to pick up Daddy in their jammies. I will be MIA for a few days enjoying time with my husband & being a family.

"Good things happen all the time."

Monday, August 31, 2009

ANOTHER CHECK UP

Emmie had an appointment with her Developmental Pediatrician today. I went with Emmie & Aidan & Emmie's Physical Therapist, Jill. Overall, Emmie is doing great!! She is very alert, tracks things well with her eyes & can grasp things very well. There is some concern with her left hip. It is clunking, coming out of the socket. It could be from her low muscle tone or something else. Emily will get an ultrasound this week to get it checked out. I am trying not to worry about it, but it is on my mind.

Emmie has some delays with her speech. This seems strange since she is only 5 months old. She is only making low tone sounds, no high tones yet. No high pitched giggles. The dr. also said Emily will be delayed with sitting up, crawling, & walking. It could take her up to 24 months to walk. These are all delays we expected, but it hits hard when it is put in front of me again. I felt like saying, "Do you know who Emmie's Mommy is?" :) I will work with Emmie for as long as it takes. It doesn't matter if she reaches all those milestones on time or not. She will do it at her own pace, when she is ready. I will be with her every step of the way, helping her & cheering her on.

Aidan was such a good boy during the appointment. He played with cars & trucks. He was so sweet to Emmie. He hugged & kissed her & said, "There's my girl!" The love he has for her is so sweet.

Daddy is due to come home for Labor Day weekend. We are very excited! Aidan has been having an extremely difficult time. He is very angry & wants his Daddy. He screams for Eric, bangs his head, cries, bites himself. It is heartbreaking to watch him go through this. All I can do is be there for Aidan & tell him that Daddy will be home soon. I hold him & let him scream it out. He needs to get it out. He knows that Daddy is away with the Army. He talks to Eric on the phone & we are going to start using the webcam soon. It will be good for us to be a family again, even if it is for a few days. We all need it. Saying goodbye again will be hard.

That's the latest. I feel like I haven't blogged in so long. I have been so busy now that Aidan is on vacation from school. Not a moment to myself! I will be writing more often once he is back in school.

Before I sign off, I want to thank my family & friends for all of their help & support. You are all amazing!! We couldn't get through this without you!! The phone calls, emails, babysitting, visits, dinners, venting sessions, hugs.......We are so blessed to have you in our lives.

One more thing.....This weekend I went to my first training session to be an advocate for Parent to Parent, an organization that helps families with children with disabilities. I attend 20 hours of training & then I will be connected with 3 families throughout the year. I have found my calling! It was an amazing day...emotional & empowering. I will blog about it next time.

Wish us luck with Emmie's ultrasound on Thursday!

Good Night!!

Monday, August 17, 2009

HANGIN' IN THERE

I feel like I haven't blogged in forever!! Life is pretty crazy these days. I feel like I don't have a moment to myself. Taking care of 2 kids alone is not easy. It's stressful & exhausting! I have a new respect for single parents....GOD BLESS YOU!!


We are doing fine. The kids keep me very busy & I am grateful for that. We have been talking to Eric pretty much every day. At times, it seems like the time is flying by. Other times, it feels like the days never end. Somedays I find myself trying to do just about anything to fill up the time. I hate to live my life like, "another day down & cross it off the calendar", but it becomes that sometimes. It's hard to fully enjoy life when the other half of my life, my partner, is far away & won't be back for a while. This is also making me think about the year deployment that is to come. How will we survive it? Are we strong enough? Right now, it's important to just get through the next 2 months.

Believe me, we aren't sitting around her moping. We live our life. Aidan goes to pre-school everyday, we do playdates, Emmie & I meet friends for walks, we go shopping, have dinner with friends, attend Emily's therapy sessions. I am so grateful for all the good people in my life....family & friends. They help me find joy, when I think I can't. They make me laugh, when I want to cry. They call & talk to me, even when I want to shut out the world. They help me feel complete, when I feel empty. How lucky am I? :)

My kids!! They are everything to me. Even though I am stressed, they bring me joy every day. Their smiles, their snuggles...I can't get enough. I hold them even closer when Eric is away, just to feel connected to him. My heart aches that they are without their Daddy. I feel a sense of pride for what Eric is doing for our country, for our family, our children. After all, where would we be if our soldiers didn't do their job? Someone has to do it. In the end, I believe Eric should be with his wife & children. We need him. We are missing out on time we will never get back. As a wife & mother, I struggle.

So, if you want to know how I am doing, the truth is, I am hangin' in there, one day at a time. This is not easy, but I am pushing through. I believe I have a fighting spirit that never quits. I have my mother, my grandmothers, my aunt, & my great-grandmother to thank for that. Strong women! They have shown me the way. I hope both of my children will have this same fighting spirit throughout their lives & be able to take whatever life throws at them...the good & the bad.

Another day down.....

Saturday, August 8, 2009

EMMIE'S 4 MONTH CHECKUP

This will be a quick entry tonight. Just got home from a friend's for dinner. Aidan is in bed. Emmie is napping & will be up soon for her final bottle. I am on Mommy duty 24/7 now since Eric left. Not an easy day for us here. Saying goodbye was hard. Eric left early this morning & I feel like he's been gone for so long. One day down.......

Emmie is doing great. She weighs 12lbs, 9oz & is 23 1/4"long. She got her shots & was such a good girl. She has had a cough so the dr. checked her out. Her lungs are clear & she is just congested in her upper airways. Nothing to worry about. Her passages are smaller than normal so it takes her longer to clear things out. This will pass.

Emmie is almost ready to try solid foods, but not quite yet. She needs to have more head control. Apparently, that is the marker for being ready to start solid foods. We will try in another month or so. No big deal.

All is well. I am grateful for the health of everyone in our family. We have everything if we have our health!!

Time to get in my jammies. I am off to bed right after Emmie's bottle. This is exhausting, but I will get through it.....for my kids....for our family. Good Night!!

Monday, August 3, 2009

DADDY IS LEAVING...GETTING READY

This blog is a little different from the others. In a few days, Eric is leaving for 2 months. The National Guard is sending him to school for a promotion. He will be in Alabama. It also looks like he will deployed to Kuwait in January. He will be gone for a year. I am going through several emotions. I feel nervous, anxious, sad, worried, angry...the list goes on & on. Right now the focus is getting through the next 2 months. I feel like my motto has become, "One step at a time". I think about the year deployment & it is almost too much to bear right now. We already went through a year deployment when Aidan was 10 days old. Eric was in Kosovo. We will deal with the longer deployment in a few months. Please just get me to October.

Eric has been busy packing & getting ready. Our downstairs is a disaster...covered with clothes & military gear. There is always so much to do when he is going to be away for a long period of time. Take care of things around the house, arrange a lawn service (thank you Green Care for Our Troops!! I am so grateful!), make sure sitters are around for Mommy to get a break,
get reacquainted with the video camera, downloading pictures, webcam, take Eric off our Rec. center membership to lower the price, & most importantly, prepare Aidan.


Aidan was only 10 days old when Eric was deployed. He didn't know the difference. Now, Aidan is 3 1/2 & he will definitely know that Daddy is gone. Aidan's pre-school has been a great help to us. His teachers made him a "Social Story" with pictures of Daddy & Aidan, a calendar, pictures of Mommy & Emily & our house. They wrote a story about how Aidan feels when Daddy is away. It's a way to start preparing Aidan for Daddy being gone.

Last night I felt it was important to start talking to Aidan about Daddy leaving. As his mother, it really hurt to tell him. I know this is just the beginning as the year long deployment will be even harder to prepare him for. Aidan was playing with his Army jeep & we talked about how Daddy drives a jeep like that when he is with the Army. I told Aidan that when Daddy is with the Army he goes away sometimes. Aidan understood & said, "Sometimes that makes me sad. I miss him. I want him". Nothing could prepare me for that. Not easy!! I told him that Daddy always comes back & that he will be home with Mommy & Emily. He said, "ok" & continued playing with his jeep. I felt a little better knowing that I started talking about it. We will continue to talk about it, but not dwell on it. Aidan needs to know he will be ok with Mommy & Emily & that Daddy will be home soon.

The next few days will be hard. Sometimes I forget that Eric is leaving & then all of a sudden I remember that he won't be here to help with bedtime, dinnertime, our nightly walks, or swimming at the Rec. center, etc. It is is temporary, but it is hard. I try to focus on the good when I can...the money, staying home with the kids, a good opportunity for Eric. The military is his passion. Everyone says, "When is he getting out?" He will never get out. It is who he is. I can't take that away from him. It's like asking me not to dance. I do my best to roll with this lifestyle, be happy & take care of the kids. They are the most important right now. I try to stay strong, but in the end, when the kids are in bed at night & I am watching TV by myself. It can get very lonely & depressing. Don't feel sorry for me. This is the life we chose. I wish it didn't have to be this way, but it is. Just pray that my kids, especially Aidan, will be OK.

So, some of my blogs may steer in the direction of military, deployment, etc. This will be a big part of our lives now. Thank you for going on the journey with us.

Friday, July 31, 2009

ONE MORE THING

I wanted to add this earlier, but didn't have enough time. I just want to say how grateful we are for our wonderful Early Intervention team. Emily's therapists & coordinator are so helpful. They are a wealth of knowledge & we appreciate their work so much. Emily is getting everything she needs & so are we. I remember working with Aidan's team & his therapists became part of our family. I feel that happening with Emily's team. Everyone is truly doing their best to help Emily in any way they can. That is priceless!!

THANK YOU!!

EMMIE GETS A WORKOUT

I am writing this entry on our brand new computer & I love it!! The keyboard is like buttah! :)
Emily's Early Intervention therapies are well underway! Here's the latest....

Speech/Feeding Therapy: Roberta sees Emily 2x/month. Our primary focus originally was
cutting down on Emily's feeding time. It was orginally taking her about an hour, sometimes more to eat 4 ounces!! She is now down to 20-30 minutes. What a difference! Now I feel like it doesn't take up our entire day. For quite a while, Emily was only able to use the nipples that we got from the hospital. All of the other nipples that we tried were too difficult for her to use. Emily has graduated from those nipples & is now able to use a regular Dr. Brown's nipple. I only chose the Dr. Brown's bottles because I used them with Aidan & liked them. Emily is doing a great job. We have really cut down on her spit up too. We make sure to give her plenty of breaks during feedings & this seems to help.

During Speech therapy, we also focus on Emily's facial muscles & tongue movement. When she is sucking on her bottle, we give her cheek & chin support. We also look to make sure there is not a gap on the side of her mouth when she sucks. Soemtimes we massage Emily's cheeks & poke one of our fingers in her mouth to get her tongue moving in different directions. All of these techniques will hopefully increase Emily's muscle tone & that will help her when she starts speaking. Roberta is a wonderful therapist & we are so grateful for her help & resources. As Emily gets older, we will increase her Speech therapy sessions if needed.

Physical Therapy: Jill comes for Emily's sessions 1x/month. We recently decided to increase Emily's sessions to 1x/week & that will take place in the Fall. The focus of these sessions is working on increasing Emily's overall muscle tone. She is a floppy baby, so we want to work on making her stronger. I am the perfect Mommy for Emily...I am a dance & Pilates instructor & am so interested in this aspect of Emily's therapy. I feel it is so important for her overall development.

Jill taught us massage techniques that we can do to stimulate Emily's muscles. We also do things like "tiptoeing" along her spine with our fingertips to activate her muscles, joint compressions, & stabilizing her hips when she is on her tummy to give her support for lifting up her upper body.
We recently incorporated a fitness ball into Emily's Physical Therapy sessions. Activities on the ball include: bouncing, rocking front to back & side to side, tummy time, etc. Jill also gave me a great resource on baby yoga. I am so excited to try this with Emily. At some point, we are going to do a few physical therapy sessions in the pool too.

Social Work: For Mommy!! Cathy comes 1x/week. It is so good for me to talk to someone about what we are going through. I feel like I have come so far on this journey in a very short time, but every once in a while, I go through a "down" phase. I think that's typical. Every day is a new step. Sometimes I feel that's all I can do. One day at a time, one step at a time.

I have to sign off. Emmie is getting fussy upstairs & Aidan is due to get off the bus any minute. Just wanted to let you know how therapy is going.

Sunday, July 26, 2009

A BROTHER'S LOVE

Aidan & Emmie....It is so sweet to watch them together. Aidan is such a good big brother. When Emily was born, we were worried that Aidan would be jealous or act out. We haven't had any of that. All we see is the love he has for her. When Emily was in my belly, we talked about her alot, read big brother books to Aidan, let him help get Emily's room ready, & took him to the ultrasounds at the doctor's office. His preschool did a wonderful job preparing for the arrival of his baby sister. They read books, played with baby dolls, & talked about why babies cry. I am so grateful for the help of Aidan's teachers. They made a huge difference.



I want to share a few stories that might help capture how Aidan feels about his little sister. As soon as he wakes up in the morning, Aidan comes tip toeing into our room, looking for his sister. (She sleeps in the cradle in our bedroom.) He often says, "Is Emily awake or asleep?" Then he peeks in on her. If she is awake, he talks to her & puts her mobile on for her. When I tell him to, he pulls the velcro tabs on Emmie's "pink thing". (her swaddler). He helps me take it off.



When Aidan gets off the bus in the afternoon, the first thing he asks is, "Where is Emmie? How is she doing?" He comes right into the house to see her. Lately, he goes right up to her says, "Mommy, tell her big brother is home!" The sweetest....



Emmie's room is girlie & pink...shabby chic with flowers & butterflies. I do my best to keep the room neat & picked up. I want it to look good. It makes me feel good. Every day, several times a day, I find several of Aidan's cars or trucks in Emily's room...under the crib, under the stool, in the crib. Aidan leaves his mark everywhere.



Every time I change Emily's diaper on the changing table, Aidan follows a routine. I have a small step stool in Emily's room that has a vase of flowers on it. I think they are peonies. Aidan takes the vase off the stool & says, "Mommy, let's plant the marigolds in the garden!" I think he calls them marigolds because of the marigolds in Ruby's garden on the cartoon "Max & Ruby". Then he puts the vase on the dresser. Next, he moves the stool over to the changing table, steps on it & watches me change Emmie's diaper. He touches her belly & sometimes he says her belly is talking. Aidan also likes to race his cars up & down the changing table. That stool is always left by the changing table. It gets on my nerves & I have put the stupid thing back in it's place over a million times. It always winds up back near the changing table. I have finally given up on taking Aidan's toys out of Emily's room & putting the stool back where it belongs. It doesn't matter if the room is not picture perfect. It matters that Emily's brother wants to be with her all the time.



When Emily is sleeping or resting in her crib, Aidan likes to take the stool over to the crib. He likes to peek in on his sister & talk to her. He also likes to put her crib toys on for her. One evening, Emmie was in her crib & it was Aidan's bedtime. He wanted to sleep in Emmie's room. He got his pillow & a blanket & we let him campout on her floor, next to the crib. This happened a few times. Big brother wanting to be near his little sister...priceless!!



Several nights during the week, we like to go for a walk around the neighborhood. Aidan always asks, "Can Emmie come too?" Eric takes Aidan swimming at the recreation center & Aidan always asks if his sister can come. He never wants to be without her. When Emmie smiles, Aidan says, "She's smiling. Look at her!" When we tuck Aidan in bed at night, he usually wants his sister to come into his bed for a little while. When Emmie cries Aidan says, "It's ok honey. She wants her bottle. She wants her binky." He often mimmicks the nicknames we call her. He thinks his sister's name is "Emily Gracie Girl!" :)



Aidan is a special & unique little boy. He is funny, smart, cute, curious & kind. He likes to splash in puddles with Daddy after a rain storm. He is obsessed with smoke detectors. He loves cars, trucks, & country music. His favorite movie these days is "Bolt". He gets mad if I do the laundry without him.



The love Aidan has for his sister is amazing to witness. Aidan has no idea that Emily has Down syndrome. When the time is right, down the road, we will tell him. To Aidan, Emmie is his little sister & it's as simple as that. She is just like everyone else. When I see Aidan with Emily he reminds me of that. Part of me feels bad for Aidan because he will never have a "normal"....I hate that word....a "typical"....that's the appropriate special education term....sister. I guess I feel like he might be missing out on something. There's the mother's guilt again!! Maybe it's everyone else that is missing out though. Aidan is a lucky boy to have Emily as his sister. My hope is that Aidan's life & ours will be richer & fuller because of Emily. I can see it already. This little girl has done something amazing to this little boy. Aidan & Emily are bonded for life. As a mother, I couldn't ask for anything more. I love my girl! I love my boy!! Life is good....

Friday, July 24, 2009

I AM STILL HERE!! :)

I did not run away! Our computer crashed & I have limited internet access. We should be getting a new computer very soon. I can't wait to get back online. I have missed writing.

Thanks for your patience!!

Tuesday, July 14, 2009

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!

Sunday, July 12, 2009

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!

Tuesday, July 7, 2009

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!

Wednesday, July 1, 2009

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.

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.

Sunday, May 31, 2009

NOW WHAT?

With the whirlwind of nurses, doctors, phone calls, text messages, friends & family, our stay at the hospital was like a blur. There are several things that are etched in my mind forever. I clearly remember when Emily's pediatrician came into our room to talk to us. He pointed out Emily's physical traits that were characteristic of Down Syndrome: the extra skin folds in her neck, her small & slanted eyes, small ears, the large space between her 1st & 2nd toes, her small mouth, etc. He basically diagnosed her with Down Syndrome, however, we had to wait for a blood test to get final confirmation. The blood test was sent away to New Mexico & it could take up to 2 weeks to get results...lovely. At this point, the blood test really didn't matter because we trusted the doctors & they were confident of the diagnosis.

The doctor then told us that a baby with Down Syndrome has a 50% chance of having a heart defect. I was floored!! At that point, I froze & panic set in. What were we going to do if there was something wrong with Emily's heart? What if she needed heart surgery? What if she died? This was all too much to bear. The doctor also told us about the possibility of Emily having hypothyroidism, cataracts, hearing & respiratory problems. This was supposed to be the happiest day of my life. My heart was now shattered & my dreams were crushed.

Emily's doctor is a wonderful man!! He held Emily in his arms & rocked her. He looked at her & told her how beautiful & special she was. He also told us that our lives are not going to be as we had planned. It will be different. In some strange way, that gave me comfort, but but it also scared the shit out of me! Will Emily be able to live on her own? Will we have to take care of her forever? Will she be a dancer like her mother? Will she have a boyfriend? A career? Go to prom? College? Have a job? All the perfect plans I had in my head for my precious little girl went out the god damn window. Now what?!?!?!

When the doctor left the room, I felt empty. Eric sat on one side of the room & I sat on the bed. My whole body felt numb. All I could do was cry & I honestly felt like I was going to crumble in a million pieces. Physically, I could feel it. Eric had no emotion. I wept uncontrollably & kept saying, "What are we going to do?" There were no answers. Our plans, our hopes, our dreams were all gone. Eric & I were so numb we could barely speak. We didn't hold each other. We could barely look at each other. This was all too much. Now what????

Thursday, May 28, 2009

THE JOURNEY BEGINS

I have always told people that I will be writing a book someday. I feel like my life has been very interesting to say the least. My best seller could be on a variety of topics: dating an orthodox Jew that left his religion to be with me, my adventures of being a teacher in an inner city high school,, my crazy life as a military wife...so many options. My mother says I get my writing talent from her mother, my Grandma Joan. She was a real estate broker & always wrote the most interesing property listings. She had a knack for writing our family newsletters & we all looked forward to them every month. I thank her for passing this on to me. Here's my version of a best seller.

I think it's important to start this blog with how Emily entered the world & how this journey all began.....

On April 4, 2009 our sweet Emily Grace was born. My due date was April 18, but I was expecting Emily to come about 2 weeks early since her big brother, Aidan was born 2 weeks early. The doctors kept telling me that nature repeats itself, so I was ready. On April 3, my husband left for training with the National Guard. He would be 2 hours away & would be reachable by cellphone. I was not comfortable staying alone with Aidan in case I went into labor, so I sent him 2 hours away to my parents' house for the weekend.

On Saturday, April 4, I awoke at 4am with sharp contractions. Right away, I knew this was it! The contractons came every six minutes. I wrote all the times down & soon they were coming every 5 minutes. I took a shower, shaved my legs, & did a load of laundry. I knew the baby was coming, but I had some last minute things I wanted to do. Everyone thinks I was crazy for doing that. I remained very calm. I knew my baby girl was on the way & I wanted to be ready...shaved legs & all!

I called Eric at 5am & told him that this could be it & that he should get on the road & meet me at the hospital. I called my doctor & he told me to get to the hospital as soon as possible. I called my girlfriend Barbara who was "on call" for the weekend & told her to meet me at the hospital. She lives 20 minutes away & I thought it was silly to wait for her & then drive 20 minutes to the hospital...too much wasted time.

I stepped outside & loaded my suitcase into the car. It felt strange to be alone & going to the hospital, but I knew I could make it & I wasn't afraid. I remember how quiet & peaceful the neighborhood was. I looked at my neighbors' houses & thinking, "everyone is sound asleep & I am about to have my baby girl!!" It was so exciting to think that the next time I walked into our home, Emily would be in my arms. I couldn't wait!!

I arrived at the hospital & Barb arrived shortly after. While I was waiting, & in full labor, I made phone calls to my parents & my sister. I also texted some co-workers & close friends. Was I out of my mind??!?!?! I wanted everyone to know that Emily would be arriving soon.

I decided that I didn't want any drugs for this birth. I had an epidural with Aidan & I was determined to give the no meds route a try. I knew that Emily was going to be our last child & I thought I should try to experience it. The pain was horrific, like no other. Barb held my hand & supported me. Thank God for her!! I tell her that she saw a side of me she probably never thought she would. We are bonded for life! :) My soul sister!!

Emily Grace was born at 8:33am. . Eric missed her birth by 15 minutes. On his way to the hospital, he was pulled over by a cop for speeding. The cop let him go without a ticket.
Towards the end of the delivery, the doctors were telling me to push. There was an intensity in their voices & in my heart I knew something was wrong. When Emily was born, I did not hear her cry. I remember the silence & it seemed to last forever. I would later find out that the umbilical cord was knotted & around her neck. The doctors did not put her on my chest like they do on all those baby shows & in the movies. They immediately brought her to a warming table across the room. She was there for an hour, but it seemed to last an eternity. Emily was surrounded by a team of doctors from the NICU. I had no idea what was wrong & no one told me. I was so out of it from just giving birth & felt like I was in La La Land.

Eric walked in & went right to Emily. No one congratulated him. They focused on Emily. The head pediatrician came over to me & was babbling on & on. For the life of me I can't remember what he said except for the words, "Down Syndrome". He also said something about Emily's physical features & that they were characteristic of Down Syndrome. I nodded & said, "OK".
I had no idea what the hell was going on.

My parents finally arrived with Aidan, followed by my mother-in-law & my sister. Everyone was so excited to meet Emily. When the doctors finally let me hold Emily, I immediately knew that something about her was different. Her face & head were very swollen & bruised from the umbilical cord. It wasn't that though. Something was different about her. I knew the doctor said Down Syndrome, but I was not thinking Down Syndrome, just different.

The hours that followed were somewhat of a blur. We were swamped with phone calls, text messages, nurses, doctors, friends & family. Emily & I stayed in the hospital for 2 days. My entries will recall & reflect on this time & what has occured since. Thank you for reading our story. I am grateful to share "Our Life With Emmie" with you.