{31 for 21} Day 31: What I've Learned

I thought I would close out my month of blogging for Down syndrome Awareness by listing 21 things I've learned.

1) Sweet Pea can be as stubborn or as sweet as her brothers and sister.

2) Her brothers and sister think she's the cutest thing alive.

3)  She has an amazing ability to wrap grandmas and grandpas around her little finger.

4)  She uses her cuteness to her advantage (see numbers 2 and 3)

5)  Sweet Pea knows how to rock a big bow

6)  She'll face many challenges in her life- just like my other kids will.

7)  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.

8)  No one can predict what Sweet Pea's abilities will be by looking at her.

9)  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.

10)  There is a wonderful community of families out there who love someone with designer genes.  And I'm privileged to be a part of that community now.

11)  There is wide variation in mental abilities, behavior and physical development in individuals with Down syndrome. Each individual has his/her own unique personality, capabilities and talents.

12)  Sweet Pea is more like her brothers and sister than she is different.

13)  Life goes on as normal- well, as normal as it can be with four kids.

14)  Children's Hospital of Boston released findings from recent surveys.  The results indicated the following things:

  - 79% of parents surveyed said that their outlook on life is more positive because of their child with

    Down syndrome.

  - 97% of siblings over 12 said that they felt pride about their sibling with Down syndrome.

  - 88% believed that they were better people because of their sibling with Down syndrome. 

  - 99% of adults with Down syndrome surveyed said that they were happy with their lives.

  - 97% of adults said they were happy with their lives.

  - 96% of adults were happy with their looks.

15)  Sweet Pea can be very demanding when her food isn't there when she wants it.

16)  My life will be different now, but it would have been different if Sweet Pea had been born with the normal number of chromosomes too.

17)  Down syndrome is a beautiful variation of what life can look like.

18)  Sweet Pea isn't afflicted or suffering.

19)  Sweet Pea has the most amazing eyes.

20)  I am the best advocate and champion my kids (Junior, Girly- girl, Squish Bear and Sweet Pea) will have.  

21)  I am thankfully for the unexpected turn my life has taken.

So there you have it.  Twenty- one things I've learned in the last almost 6 months.  I probably won't continue blogging everyday (although Grandma would love to see pictures everyday), but I will try to post once or twice a week...  Maybe...  If I'm not too busy keeping up with four kids =)

{31 for 21} Day 30: Cousins

Another guest post today.  My youngest niece came down from MN for a visit and to meet her newest cousin for the first time.

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It was so cool to meet my cousin for the first time. I have to say one thing she is so cute! I love how she looks at you and smiles. She is really quiet for a baby I would say. She is just like a regular baby but cuter. She loves to talk a lot. So happy to come down and meet her!

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One more day and then I can go back to my once or twice a month posts =)

{31 for 21} Day 29: A Different Perspective

As the day quickly comes to an end, I realize I don't have a very creative post for today.  Busy day hanging out with family and I'm ready to head to bed =)  But...

I had the privilege to read this blog the other day and it really got me thinking.  There are many things I want everyone to know about Down syndrome, and at the same time, there are many things I want people to know about me.  

Muchier Muchness is much more eloquent than I am, so head over and read her take on what it takes to be a special needs mom =)

And the required shot of cuteness.

{31 for 21} Day 28: Squish Bear

In all the excitement of bringing Sweet Pea home, we almost missed Squish Bear's birthday =)  But, my dad came to the rescue and made a birthday cookie for him.

Happy 4th birthday Squish Bear!  We're so proud of you and the person you're becoming =)

{31 for 21} Day 27: One Thing

Today is the last common topic of the month - "What I Wish People Would Understand About Down Syndrome".  The goal is to express the one most important thing that I want people understand about Down Syndrome. 

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I'm not entirely sure where to go with this topic.  There are so many things I want people to understand, but I think what it really boils down to is that I want them to *get* is that Sweet Pea is a baby just like any other.

I want them to *get* that she has as much potential as her brothers and sister.


I ran across this post while I was trying to Occupy Children's Med City and thought it spoke volumes to what I want people to get.


I hope they don't mind me re-posting it here:

Einstein Syndrome

by Miriam Kauk

Imagine that you have just given birth. You notice a sense of excitement in the room. Finally, the doctor comes to you with a big smile and says, “I have some important news to give you. Based on our preliminary examination, we believe your baby has Einstein syndrome!”

The doctor goes on to tell you that children with ES typically read by age three, and by six or seven read at a high school level. They can master many languages during their preschool years, develop phenomenal vocabularies, and complete high school by age ten or eleven and college by fifteen. Furthermore, children with ES have remarkable physical skills. Many Olympians have ES. And they tend to be excellent musicians.

Now, how are you going to treat this child? It is doubtful that you are going to leave him in his crib for the first two months, watching a mobile.

Instead, you will keep your child in a room full of activity. You will talk to him, naming items, and expecting him to begin to understand you. You will surround him with classical music. You will read to him as much as you can and begin teaching him alphabet letter sounds very early.

This child will go with you everywhere, just so you can teach him more about the world. He won’t be in a playpen; you will be giving him lots of opportunities to learn to crawl, and you will expect him to go get things himself. You will probably hire a nanny who speaks another language, and will likely enroll him in gymnastics or swimming classes.

Guess what? Even if the diagnosis was wrong, by the time your child is five or six, people will begin commenting on how incredibly bright he is. He will be an excellent reader, have a tremendous vocabulary, have a good ear for music, and be exceptionally coordinated, all because of the extra input that you have given him based on your expectations.

Contrast this with another scenario, this one all too real. After giving birth, there is stillness in the delivery room. The nurses seem to avoid you. Finally, maybe several hours later, the doctor tells you what is wrong. “Your baby has Down syndrome. Try not to let it ruin your life.”

As you read more about Down syndrome, this dreary prognosis emerges: Your newborn baby is retarded. He will learn to crawl and walk late. His language skills will always be minimal, and he will never be able to express himself well. This child might learn to read a little, but certainly not by the age that normal children do, and never well. Even as an adult, he will always do stupid things because he will never learn to think well.

With that dreary prognosis, how are you going to treat your baby? Why bother talking to him? He won’t understand you anyway. Why bother reading to him? He’ll never learn. Why bother even getting him out of his crib? He isn’t supposed to crawl for many months. And guess what? He doesn’t learn to walk, read, talk, or think well, just like they all said.

I am convinced that the biggest handicap Down syndrome children have is the low expectations of their parents.

This baby may have physical problems. Maybe he doesn’t hear well. Maybe he has poor muscle tone or a heart defect that leaves him weak and causes difficulty with new physical skills. This little baby needs lots of extra sensory input just to balance his physical handicaps.

As a baby, my daughter, Mary would have been content to lie on the floor for hours sucking her thumb. As a toddler, she hardly demanded any attention. With five other children, I had plenty to do and easily could have ignored her. But Mary needs more input, not less. I needed to make a constant effort to interact with her and involve her in what the family does. As a result of all that extensive input, by the time Mary was three, she wasn’t in the least passive, but was on the go non-stop.

I have been accused by a social worker of not dealing realistically with Mary’s condition, of being in “denial.” Yup, I’m in denial. But as long as I believe that she is capable of normal function, I will be willing to give her the input she needs to get there.

This article was first published in the Teaching Home magazine in July/Aug 1994.
Copyright 1994-2011 Miriam Kauk

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I am convinced that the biggest handicap Down syndrome children have is the low expectations of their parents.


I would like to add that most parents of children with Down syndrome want the best for them and with more access to therapies, this generation of children will achieve more than any other generation.  Now, it isn't the low expectations of the parents that hold them back, its the low expectations of society.


I wrote a post the other day about seeing my child through God's eyes.  My heart was heavy that day because I had run into someone who didn't believe that Sweet Pea could achieve as much as her brothers and sister.  A person who believed that it wouldn't be worthwhile to invest in her future.  


So, to that one person, and any others who want to believe she isn't worthwhile, I challenge to view her and other children like her through God's eyes.  Because God doesn't make any mistakes.  Sweet Pea's life has a purpose and a future.

{31 for 21} Day 26: Wordless Wednesday

{31 for 21} Day 25: Through My Eyes

You see a diagnosis

I see a miracle baby

 

You see stereotypes

I see an individual

 

You see limitations

I see possibilities

 

You see challenges

I see opportunities

 

You see a burden

I see a blessing

 

 

You see her through the world's eyes

I see her through God's eyes

{31 for 21} Day 24: Lil Miss Sassy Pants

Everyone told us we would notice a difference in her after her surgery.  I just wasn't expecting it this soon =)

" All right Coconut.  You distract her while I make a break for it."

I'm really going to miss my sweet, snugly baby.  But I look forward to getting to know this new sassy one.

{31 for 21} Day 23: Silent Sunday

{31 for 21} Day 22: Progress

Two days post- op

Sweet Pea is making progress.  Her chest tube and pacer wires came out this morning.  The nurses are optimistic that the atrial line will be out today as well.  I'm glad the tubes and wires are slowly disappearing.  Nursing has been a bit of a challenge- trying to get her situated without getting tangled up =)  But we're making it work.

The other kiddos came up for a visit yesterday, and I, of course, forgot to get a picture of them with their sister.  I am very grateful for the staff here at the hospital.  Before the kids went in, they brought out a doll that had all the same wires and stickers on it that Sweet Pea had.  The Child Life specialist went through each one and explained why each one was important.  All three were excited to see here and can't wait for her too get home (and neither can we ;))

The other kids have been completely spoiled by grandma and papa.  My dad has been doing lots of projects with the kids- yesterday it was soap carvings.  There's been campfires and s'mores and trips to the "man" store.  I'm very thankful that they're both retired and can come down and spend this time with the kids.  It's been a huge weight off my shoulders knowing the other kids are well taken care of =)

{31 for 21} Day 21: Caption This!

Go ahead, have some fun =)

{31 for 21} Day 20: This Child

This is the 3rd part of a group series, covering faith and Down syndrome. Many will be linked on the 31-for-21 Group Page - I'd love to hear your perspective. A comment would be so welcome, as would a link to your blog, or a post that you've perhaps written about this? 

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I've been a Christian for about as long as I've been married.  I've experienced highs and lows, but never anything that shook me to the foundation.  Until Sweet Pea was born.


I remember countless days and nights crying out "why?" and never getting an answer.  Then, in the midst of the storm of whys...


"Be still and know that I am God" Psalm 46:10


There came a reply: "Why not?"


Through nights of crying and trying to remember anything, everything that I could have, should have...


"Blessed are those who mourn, for they shall be comforted' Matthew 5:4


Finally coming to the realization that if anything had been different, I wouldn't have this child.  This child that we were meant to have to change our future.


"For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope." Jeremiah 29:10-12


Learning now to give up control of what was never mine to control in the first place.  Letting go and letting God take control.  Walking in faith that everything will be accomplished according to His plan.


I didn't plan this (who does?) but I had a choice.  I could have chosen to let this shatter my faith and miss out on all the joy and beauty that Sweet Pea has brought.  But instead, I choose to trust the One who orchestrated it all.  He sees the beginning from the end and knows the path we are to walk.  It may not always be sunshine and roses but I know we are being refined like silver in a furnace- refined so the Silversmith can see His reflection in us.  And isn't that why we're here?  To reflect Jesus to those around us?


"And we know that all things work together for good to those who love God, to those who are the called according to His purpose." Romans 8:28


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Since the day we found out about her heart defect, Sweet Pea has been covered in prayer.  Our family prays for her every night.  Our church prayer warriors lift her up each and everyday.  And now, with her surgery yesterday, there were prayer warriors across the country praying for her and her doctors.  


"And whatever things you ask in prayer, believing, you will receive." Matthew 21:22


They took the ventilator out this afternoon and Sweet Pea is responding so well.  She's getting sassy and kicking off any blankets they put on her and not letting them play (work with the IVs) in her feet/ legs.   The doctors are going to let her try to eat something in a couple hours.  So far, they are very impressed with how well she is doing.  


We are so grateful for everyone who has prayed for and sent positive thoughts for Sweet Pea and for us.  I know the only way I've been so calm through this is because people have been praying specifically for that.

Taken a couple days before her surgery, but I couldn't have another post without a picture of absolute cuteness =)

{31 for 21} Day 19: Tinker with your ticker

Today was the day.

After an early, early wake up, we headed to the hospital.  Everyone we came into contact with was wonderful- so willing to let us know exactly what was going on and how long things would take.

We were met in the holding area by our pastor and our children's pastor.  They both prayed with us before Sweet Pea was taken back to the OR.

When we came out of the holding area, pastor was waiting along with another friend from church.  Pastor stayed with us until Sweet Pea was taken over to the ICU.  We were so blessed to have so many friends come and sit with us while we waited.  It made the time pass by so much quicker.  

Our other kids were kept entertained at home by grandma and papa.  They are having fun, but are looking forward to seeing their sister again.

Now we wait.  Wait for her to come off the ventilator.  Wait for them to start removing tubes and wires.  Wait for her to wake up.  Wait to hold her.  That's the hardest for me right now- I can't snuggle with her.

Continued prayers are greatly appreciated.  The surgery was a success, but she still has a long road ahead of her.

{31 for 21} Day 18: Pre- Op

The countdown is down to hours.  In less than 14 hours we will be handing Sweet Pea over to have her heart fixed.  Gulp.

Her pre- op appointment went great.  I'm very impressed with the hospital and their accommodations for families.

We also received a bead necklace with Sweet Pea's name on it and a colored bead for every procedure she will have done.  It's a way for her to tell her story- when she's older of course =)

That's about it for today.  Short and sweet.  We're going to go love on our kids and *hopefully* get some sleep tonight.

{31 for 21} Day 17: Getting Ready

Posts the next few days may be sporadic.  Sweet Pea has her pre- op appointment tomorrow and then Wednesday morning we need to be at the hospital by 6am.

I'm anxious, scared and a whole mix of emotions, but I also know she needs to have her heart fixed.

My parents are here to help out with our older kids- which I'm so thankful for.  It's one less thing I have to worry about right now.

My dad made this bench for our anniversary.  He's so talented when it comes to woodworking =) 

{31 for 21} Day 16: Twelve Years

This post has nothing to do with Down syndrome, but yet it has everything to do with it.  Without this one event, I wouldn't be were I am today.

Twelve years ago I married my best friend.

Wow, we look so young!

Didn't everyone cut their cake with a sword?

So many things have happened in the last 12 years.  

Four beautiful children...

Junior                                          Girly- girl 

Squish Bear                                      Sweet Pea

Deployments...

And homecomings...

And so many more.

As we start this journey down a path that neither of us expected to take, I'm so glad that it's you walking with me.  

I love you Sarge, now and forever.

{31 for 21} Day 15: Rememberance

Today is Pregnancy and Infant Loss Awareness Remembrance Day.  

Although it felt like my heart was broken into a million pieces when Sweet Pea was born, I realize how blessed I am to be able to hold her in my arms and see her sweet smile.  Many of my friends never had the chance to experience that with their little ones.

My heart and my prayers go out to them today.

{31 for 21} Day 14: Just the facts, m'am

Just posting some myths about children with Down syndrome and what the facts are.  This list can be found on the National Down Syndrome Society website.

Myth: Down syndrome is a rare genetic disorder.

Truth: Down syndrome is the most commonly occurring genetic condition. One in every 691 live births is a child with Down syndrome, representing approximately 6,000 births per year in the United States alone. Today, more than 400,000 people in the United States have Down syndrome.

Myth: People with Down syndrome have a short life span.

Truth: Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome.

Myth: Most children with Down syndrome are born to older parents.

Truth: Most children with Down syndrome are born to women younger than 35 years old simply because younger women have more children. However, the incidence of births of children with Down syndrome increases with the age of the mother.

Myth: People with Down syndrome are severely “retarded.”

Truth: Most people with Down syndrome have IQs that fall in the mild to moderate range of intellectual disability (formerly known as “retardation”). Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.

Myth: Most people with Down syndrome are institutionalized.

Truth: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways.

Myth: Parents will not find community support in bringing up their child with Down syndrome.

Truth: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome.

Myth: Children with Down syndrome must be placed in segregated special education programs.

Truth: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.

Myth: Adults with Down syndrome are unemployable.

Truth: Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.

Myth: People with Down syndrome are always happy.

Truth: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.

Myth: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.

Truth: People with Down syndrome date, socialize, form ongoing relationships and marry.

{31 for 21} Day 13: Celebrate! I'm glad I have a child with Down Syndrome...

October is Down Syndrome Awareness month and in honor of that, bloggers are posting once a day (31) to help raise awareness for Down Syndrome (21).  A Facebook page has been created as a way to share some of the posts and on Thursdays, we all try to write about the same thing.  Today is "Celebrate! I'm glad I have a child with Down syndrome because..."

I've struggled with writing this post all day.  Not because I don't love Sweet Pea.  She melts my heart every time I see her interacting with her brothers and sister.

Or when she makes silly faces at me.  Yeah, I know we'll eventually have to work on getting her to keep her tongue in her mouth.

Or kissing her hand with the single crease...  Her Kissing Hand =)

I've struggled because I'm not sure how I feel about Down Syndrome yet.  It's a part of who she is, and it made us aware that she has a heart defect, but I don't want the labels, the stereotypes, to limit her in anyway.  I want her to succeed, or fail, on her own abilities and not the limitations that others will place on her.

I could list how having Down Syndrome has given her such unique features (the almond- shaped eyes, the smaller ears).  Or how her low muscle tone allows her to just "melt" into me when we snuggle.  Or how my older kids are learning a lesson in unconditional love that few others ever get.

But all I want to celebrate right now is Sweet Pea and the tiny, perfect miracle that she is.

{31 for 21} Day 12: Wordless Wednesday

{31 for 21} Day 11: What if...

Do you ever stop to think about all the "what if's" in your life and what a huge difference that might have made? I remember all the plans I had graduating from high school.  The perfect career all planned out...  But, I never planned on getting married.  I'm sure the thought crossed my mind, but it wasn't something I dreamed about.  And having kids wasn't even on the radar.  Funny how that changes.  Funny what a change in the "what if's" can do for the direction of your life.

I could go through a whole list of "what if's" and analyze how my life could have been different than it is right now.  But really, the most important "what if" is one I'm sure all moms of children with designer genes thinks about.

What if Sweet Pea hadn't been born with designer genes?  What if my world hadn't been turned upside down?

I would have gone about my daily life like normal (well, as normal as life with a newborn can be =)).

I wouldn't be mentally and emotionally preparing send my baby off for open heart surgery, but I would be mentally and emotionally preparing to send my husband off on another deployment.

I wouldn't have taken the time to slow down and really cheer for every milestone reached (and yet to be reached).

I wouldn't have been introduced to all the wonderful, loving families that sport designer genes.

I wouldn't have seen the unconditional love displayed by the older kids.  They never once questioned that their sister wasn't perfect.

I wouldn't have had my heart changed.

I wouldn't have thought about becoming an advocate for those who don't have a voice of their own.

I wouldn't have know what it is to see perfection and unconditional love through God's eyes and not the world's.

{31 for 21} Day 10: Green Meadows

Another post that isn't specifically about Down syndrome...  But what I'm starting to realize is that even though it is a part of our lives, it's not our entire life.  We still have plenty of other things that we like to do as a family =)

Today we took some time to visit Green Meadows Farm.

Hanging out with the chickens

My turkeys with the turkeys =)

Feeding the goats and sheep

Milking a cow

Little piggies

More cows

Yes, I actually do exist ;)  Not that often that I get pictures of me taken lol!

Sweet Pea had started out in the stroller, but at one point we were surrounded by school field trip kids who wanted to "pet" her.  Didn't really appreciate that, so I put her in the wrap to keep her away from grubby little hands =)

There was a really neat playground at the park outside the petting farm.

{31 for 21} Day 9: Silent Sunday

{31 for 21} Day 8: 5 months

Yup, five months already.  Doesn't seem like she should be that old yet.  And I know part of it is because of the delays.  She's only really getting the hang of the head control and grabbing things now.  But she loves her new ride.

The infant sling for the Chariot has got to be the best thing we've bought for her so far.

The whole family joined me at a race this morning.  Sarge was in charge of the kids.  And I helped pace a friend to PR in the 10k.  

Yeah, we're pretty fashionable runners.  And now Agent J knows better than to challenge me to make a kilt for him =)