Monday, July 30, 2012

Don't you Dare

I woke up on the 16th of July with a new song in my heart, literally.  I'm a composer, and before I left the hospital with Sam, I knew there would be a song to be written someday.  That Monday morning, it started to surface.  With it came a new sense of calm and peace - a giddiness and excitement a long time coming.  I was in such a mood that Ella said "mom, you're acting weird today."  I now call it the day the clouds lifted.  It only took 109 days of gray attitude, but the sun was finally shining.  Am I still scared as hell about Sam's future?  Yes, I will always be scared.  Do I still wish with every ounce of who I am that he hadn't been dealt this hand?  Of course.  But am I sad anymore?  Heck no.  Have I finally embraced what could be the best thing that's ever happened to me?  Yes, finally.

I brought Sam along to our hometown kickball night that week, and I remember sitting in a camp chair with him on my lap.  He was in one of the best moods ever and was chattering up a storm with me.  I talked back to him and we had ourselves a great conversation.   Children came running over to say hello to "baby Samuel" and pet his fuzzy little head.  I've wondered when the day will come that the other kids start asking questions.  The day is here.  The days like this will continue.  "Why does his tongue hang out all the time?"  "Why does Sam need a teacher?"  "How come he can't sit up?"  "Why are his eyes funny looking?"

Unfortunately, when Sam was born, I think we received more "I'm sorry to hear that" comments than the standby "congratulations".   I got so tired of hearing the word "sorry" that I wanted to puke.  I didn't want to be the center of people's pity.  I didn't want to be felt sorry for.  I didn't know exactly what it was that I wanted at that time, but I knew it wasn't sympathy.

I've since discovered what I want.  I want to share him.  I want to share his love with the world.  I want you to know how unbelievably lucky I am to be his mother.  If you could just once, be the one to peel him from slumber in the mornings and see him crack his eyes open, take one look at you and offer up the most beautiful smile ever, you would understand.

The questions, the comments,'s in my nature now to stand up and defend, and I suppose it will always be that way.  But I want to share something with you that I find so remarkably beautiful, I can hardly comprehend that it was my child who did this...

"Dear Sam and Amanda,
This is a little late in arriving but the message is the same.  Thank you, Amanda, for trusting me to hold Sam during worship services.  I felt so very privileged to hold God's precious gift in my arms.  Thank you, Sam, for being so good and for providing me one of the best worship experiences I have had.  I just held you, felt your heart beating, listened to you breathing and listened quietly to the entire service. I didn't worry about the words and notes to the songs, listened to the liturgy, and sermon and just felt the worship.  It was truly a beautiful experience.  Thank you both for providing me that and any time again."

I am the organist at my church, and on the Sundays that Kevin doesn't attend services with us, members of the congregation literally argue over who gets to hold Sam.  I overhead the woman who wrote the note above say to her daughter in law "it's MY turn, you got him last week."  I love it.  They're fighting over my baby.  I know he's always in good arms while we're there and I'm so thankful to be a part of loving church family who welcomes and accepts Sam for all that he brings.

Sam is four months old today.  I have no idea where the time has gone.  I'm in a place where I am thankful for the emotions I've experienced, because I have discovered a person inside of me I never knew existed.  I'm proud that my strength has been tested, because now I can truly believe that what doesn't kill us only makes us stronger and that it's true that we're only given as much as we can handle.  The clouds are gone, the sun is shining and I am happy.  I am proud.  I am thankful.

So go ahead, ask all the questions you'd like.  Go ahead and make comments, good or bad, about my child.  Be ignorant or be accepting.  Be cold or be loving.  Disregard or believe in Sam.  But whatever you do, don't you DARE feel sorry for us.  We have been given a gift, and if you'd like, I'll let you take a peek inside and experience a little bit of Sam's love.

Friday, July 20, 2012

Getting the facts STRAIGHT!!

Naturally, I want to learn as much as I possibly can about Down syndrome.  I have to.  The internet is great, most of the time.  You can type in any topic from A to Z and have about a million choices of information to choose from.  It's great, most of the time.

I bought a few "text" books so that I could read up on the most current information pertaining to Down syndrome.  The reading is a little dry, and down right terrifying, so I put those books on the shelf.  I'll refer to them when needed, and only when needed.  As I go about my day, I may Google a burning question or two.  For instance, today, I ran a search for information about the use of animals and pets as part of therapy for kids with special needs.  Specifically, I was hoping to find information about cats.

Nala, in the stroller with Sam,
snuggling in with her bud.

We have this cat named Nala, she's Ella's cat technically, but beloved by the whole family.  She is the most tolerant, mellow cat I've ever known.  The kids can hold her in the cradle hold and pretend to feed her like a baby, and then throw her up over their shoulder, to burp her.  This cat loves Sam.  It's strange how much this cat loves him.  She will crawl up into the stroller with him and snuggle into him and fall asleep.  When I sit on the deck to let Sam get some fresh air, Nala comes over and stands on my lap too and nuzzles his cheek with her nose.  I have a friend who has two daughters with special needs, and she swears animals know when a child has special needs, and they pay special attention to those kids.

Back to my search.....I can't find information specifically about cats in therapy yet, but I do find information about horses and dogs.  Well, we've had enough bad luck with dogs for me to confidently say there's no way in hell I'm getting Sam a dog anytime soon.  And Kevin has, more than once, said he'd rather have his kids on drugs than on the back of a horse, so that's out too.  So, I guess it's back to cats.  Sam is getting his very own kitty next week - her name is Gems.  G for Grace, E for Ella, M for Marie and S for Sam.  She's the sweetest cutest thing ever!

But while I was searching for the information I needed, I came across untrue things relating to Down syndrome.  There are a million and one sites that have "the basics", like diagnosis, symptoms and the like.  On one I came across, it stated "parents of children with Down syndrome are more likely to have another child with Down syndrome if they should choose to have more children." This statement is FALSE!  Yes, in some cases this is true, but not in all.  Sam has nondisjunction Trisomy 21, which happened randomly as his cells divided after conception.  In translocation Trisomy 21, the extra chromosome is the result of one of the parents genetic information.  In that type of Down syndrome, the chance of having another child with Down syndrome is much higher, but for us, the chances are no greater than they were when Sam was conceived.

So what is truth and what is myth?

Myth: Down syndrome is rare.
Truth:  It's not rare at all, there are approximately 400,000 Americans living with Down syndrome as you read this.  It happens in every country around the world, and it happens to every race, every religion and every economic class.

Myth: People with Down syndrome don't live very long.
Truth:  With the advancement of medical care, people with Down syndrome commonly live well into their 50's and beyond.  It's true that in the past, the life expectancy for people with Down syndrome was very short, but that is no longer true.

Sam, with me...his "young" mom.
Myth: Only "old" women have babies with Down syndrome.
Truth: While it's true that there is an increased risk for Down syndrome as a mother ages, young women have babies with Down syndrome as well.  I was only 30 when Sam was conceived, and I met a woman last week who was only 19 when she delivered her daughter with Down syndrome.

Myth:  People with Down syndrome are "severely retarded".
Truth: Most people with Down syndrome only experience mild to moderate intellectual disability, and with loving homes and early intervention programs, most people with Down syndrome go on to lead a productive and fulfilling life.  Instead of viewing them as a person with a disability - let's call it a differentability.

Myth:  People with Down syndrome can't work.
Truth:  People with Down syndrome can indeed work, in fact they are more likely to do their job happily and enthusiastically than you are.

Myth:  People with Down syndrome are always happy.
Truth:  Yes, it might seem that way, but in fact people with Down syndrome experience the same emotions that you and I do.  They are capable of being hurt, upset, angry and unhappy.

You can do your internet search to find even more truths and myths regarding Down syndrome.  I'm only at the beginning of this amazing journey, and I've learned some facts straight from Sam himself.  You don't always needs books and surveys to tell you the greatest of life's truths.

Fact:  Sam wakes up every morning with a smile.
Fact:  Sam lights up when his sisters walk in the room.
Fact:  Sam brings joy not only to our family but to everyone around him.
Fact:  Sam is the cutest darn little boy I've ever met.
Fact:  Sam is smart and strong and active and healthy.
Fact:  Sam is loved.
Fact:  Sam has taught me to stop and find beauty in all things and to stop sweating the small stuff.
Fact:  Sam is an inspiration to me, to Kevin, to his sisters and our whole family.
Fact:  You can't wait to hug him.

Sam and Grandpa

Please, learn and share the facts about Down syndrome.  With everyone's help, acceptance will grow in everyone's heart.

Thursday, July 19, 2012

Humbling Moments

Have you heard that song "In my Daughter's Eyes?"  It starts out something like this...

In my daughter's eyes, I am a hero.
I am strong and wise,
And I know no fear.
But the truth is plain to see:
She was sent to rescue me,
I see who I wanna be, in my daughter's eyes.

In my daughter's eyes, everyone is equal,
Darkness turns to light,
And the world is at peace.
This miracle God gave to me,
Gives me strength when I am weak.
I find reason to believe, in my daughter's eyes.

When this song came out, it was about the time my oldest daughter Ella was born.  I can remember singing it in my car at the top of my lungs, and breaking down crying when I listened to it, because I had a daughter and I hoped and prayed that I could be a hero in her eyes.  I hoped that she believed I was strong and wise, and I really did find reason to believe when I looked in her eyes.

For all of my children, I strive to be a hero, I strive to be strong and wise.  I wish I knew no fear for their sake.  Recently, Ella has turned the tables on me, and it's her who has become my hero, she has become exactly the person I wish I could be.

We all looked forward to the arrival of our baby boy, our brother, our son.  After the diagnosis that rocked my world, Ella kept saying things like "I'm so glad Sam has Down syndrome" and "I think it's ok that Sam has Down syndrome, I think it's kind of cool."  Without being too outwardly negative, I tried to correct her way of thinking.  I kept saying, "no, this isn't a good thing."  She would ask "mom are you happy that Sam has Downs?" and I would quickly reply, "no, I'm not."  

This past weekend, I was trying to get the billion pictures we've taken of Sam organized so that I could start working on his scrapbook.  Ella was glancing through some pictures, and again she said "I'm really glad that Sam has Down syndrome, are you mom?"  Tears sprung to my eyes and I said again "no, I'm not glad.  I know it's hard for you to understand, but he's going to have a hard time his whole life because of this.  Do I love him? Yes.  Am I glad he's in our family?  Absolutely.  But no, I'm not happy that he has Down syndrome."

I think my answer was more than she expected.  She put her hand on my shoulder and said "it's ok mom."  Then Grace came along, and found a picture she was in and boldly stated "do you like my smile in this one?  My lips are gorgeous." Nobody provides me with comic relief better my baby girl!

The moment passed and I hoped that Ella's belief that Down syndrome is "good" would finally be put to rest.

Later that afternoon, I took the birthday girl, Marie, and several friends to the pool in town for a swim.  It was hotter than the dickens out and we were all ready to cool off from the hot summer sun.  The girls all got settled into their suits, slathered up with sunscreen and were in the water before I could say "boo."

Rewind to the beginning of June...
I took the girls to the library one afternoon, and there was young woman there who kept glancing our way and smiling.  I had Sam with us too, he was sleepily slurping down his afternoon bottle.  Finally, the woman approached me and asked how old Sam was, and introduced me to three of her kids.  I asked what her kids' names were, and she proceeded to recite all SEVEN names!  I would have never guessed her to be the mother of seven.  And when she walked away, I felt resentful.  I remember thinking to myself, "you and your seven healthy kids, you probably take for granted that they're all healthy and "normal."

Back to the pool....
As the girls were in the water splashing around, a young lady caught my eye.  She had a "look" about her.  Was it her eyes?  Yes, they were sort of almond shaped and slanted upward.  She was short, but so am I.  The back of her head was definitely flatter than I would expect.  Her petite hands and short fingers, yes I think she has Down syndrome.  And what's this?  It's the woman from the library helping her swim.  My jaw about dropped.  Well, maybe she's not her mother, maybe she's a relative helping out or maybe she's a hired helper.  But then I hear her say to her younger daughter, "come and swim with your sister."  This was a humbling moment in my life.

My mind was racing - would it be inappropriate to assume her daughter has Downs and talk with her about it?  Would it be out of line to ask her story?  Would it be ok for me to befriend her after I so wrongly felt resentment towards her last month at the library?

I'm not real good at holding back, and I did approach her.  She was rinsing her youngest off in the shower and I walked past, backed up a step or two and said "I don't want to be too forward, but..." and she interrupted me and said "yes she has Down syndrome."  I replied, "Ok, my son Sam has Down syndrome too."  She said simply "I know.  That's why I talked to you at the library that day."

Wow.  This woman, who I wrongly assumed to take for granted her beautiful children, is no different than I am.  Her and I share something in common that we will always and forever share.  A story.  A story of fear, and a story of unconditional love.

My Ella is right, in a way.  Perhaps it is good that Sam has Down syndrome, because he's doing good things in my life without even trying.  He's opening my eyes to a world filled with beauty and he's opening my heart to see everyone equally.  He's showing me that it's not my place to judge, and he's assuring me every day that the people who choose to judge him or our family are not people we need on this team.

Sunday, July 8, 2012

Good Ol' Summertime

The fifth load of laundry is in the washing machine, and by the looks of the piles I have sorted on the laundry room floor, there are six more to go.  The past week has been filled with nearly all of our favorite summertime activities, crammed into one wonderful week of sun-kissed cheeks, tummies filled with ice cream and s'mores and eleven loads of really dirty clothes, towels and sleeping bags.

Cooling off on the Slip-N-Slide
It began last weekend with a picnic with Joe's family.  Saturday evening was enjoyed by both our families with some good times on the slip-n-slide, bike rides, super swinging on our "Paul Bunyan" swing set and supper hot off the grill.  The weather was perfect and the bugs stayed away long enough to enjoy the entire evening outside.  We've discovered that Sam is not a fan of the heat, and he kind of goes into sleep mode while it's hot outside, but when it cools off in the evening he perks right up to his happy old self!  Our kids all get along so great and we are really enjoying our newfound friendship.

Joe and a very sleepy Sam
Joe's Big Sister with her feet in the trees....we call our
swing set the "Paul Bunyan" swing set...this is why!


This is going to sound silly, but I made myself a goal for our picnic with Joe's family.  The sole reason we are in each other's lives is because our sons have Down syndrome, and if it weren't for that, this little picnic wouldn't have taken place otherwise.  However, as we've gotten to know Joe's family, we've really come to enjoy their company, all Down syndrome things aside.  With that said, I vowed to enjoy the evening with good friends and not talk about, ask questions about or bring up anything Down syndrome related.  I'm realizing that even though, yes, we have Down syndrome in common, it's far from the only thing we have in common.  We enjoy a lot of the same things, and our time spent together shouldn't be shadowed by Down syndrome.  Guess what?  I did it.  A couple times, I just about asked questions pertaining to Down syndrome, but I held my tongue. The closest we came to discussing Down syndrome was when we got an update on how summer preschool was going for Joe. I know in my heart that I can call Joe's mom 24 hours a day if I have questions or concerns, and I wasn't about to spoil a great evening with my questions and worries.  It was WONDERFUL!

At Camp Joy with counselors and friends
The next day, our oldest was off to bible camp for a few days and I got to start my weeklong vacation.  We didn't do anything too exciting Monday or Tuesday other than try to beat the heat at the pool and Grandma's lake.  Sam got to meet a new friend who he'll go to school with someday, a friend from Kevin's work just had a little boy a couple weeks ago.  We woke up on the fourth to the sweltering heat and got ourselves ready for the 4th of July parade in our town.  Our 4H club had a float.  While Sam stayed home with my mom so he wouldn't melt, the rest of us headed to town to toss candy to the many onlookers and encourage others to join 4H.

Immediately after the parade, we headed home to pack for our five-day stay at our favorite place in the summer, Lost Valley Resort.  We had to change clothes before we left because packing left us all wringing wet with sweat!  The first thing we did at the resort was jump into the lake.  Sam was hungry shortly after we got there, so I plopped a camping chair in the shallow part by the shoreline and Sam enjoyed a bottle IN the water.  This is the life!

Just one of SEVERAL
ice cream cones!!
That evening, we enjoyed several different fireworks shows from around the lake and headed to bed WAY past our bedtime.  The following morning, two other families joined us for the weekend.  We enjoyed many many hours in the lake, swimming, tubing and kneeboarding, eating s'mores and ice cream (after our carrots and celery of course), going for walks and bike rides and hanging out by the campfire.

Sam thoroughly enjoyed his first camping trip, spending a ton of time napping in the shade of the birch trees by the shore or in the air conditioned comfort of the camper.  He was the only kid of 8 who didn't sleep in the tent and get flooded our second morning there, and he was also the only kid who didn't eat about a gallon of ice cream over the weekend.  No joke, our group, which included six adults and eight kids, consumed 71, I repeat SEVENTY ONE ice cream cones over the course of our stay!  (Our family racked up 35 of those!!)  I have NO doubt that next year, Sam will add several to that number!

Tomorrow, it's back to work and hopefully a regular laundry load.  This week, we'll celebrate a birthday in our family, as our second oldest turns 6!

Sam's therapy is going great, and he's continuing to make progress.  We tried nursing again while camping (because it's easier than washing all those darn pumping parts and pieces), and while he did a great job, it's back to pumping now.  He's so darn rambunctious while he eats, he barely gets the job done even with a bottle.

Sam is bringing SO very much joy to our lives.  Even at three months old, the girls still fight over who will hold him first, who will hold him the longest and who loves him more.  It amazes me every day how much my life has changed with him in it.  While some days are better than others, I feel like I'm more patient and learning to love deeper than ever before.  I've become a person who accepts everyone and everything more openly, and I'm watching Sam do that to others around him as well.  Every single child is such a blessed gift and brings beautiful things into our lives.  My cup is still truly overflowing, my mind is still truly overwhelmed, my heart is still truly filled, and my family is still  truly blessed.  This life, while not quite what I had planned, is perfect.

Monday, July 2, 2012

What a difference a day can make!

One year ago this very moment, we were packing our bags and coolers, loading the vehicles and heading to the beach with Kevin's sister's family and one other family.  In all, there were six adults, and six children - 5 girls and one poor boy.  (one poor boy that Kevin was quite charmed by, by the way)  The weather was perfect, the beer was cold, the water was refreshing.

On the way to the lake, my sister in law asked me if we were going to have any more kids.  Why we had that conversation, I can't recall exactly, but I remember telling her that I was finally in a place where I felt like I didn't want any more kids.  I should mention that I did go through a period where I begged Kevin nearly every day to have just one more, but he wouldn't budge.  The "itch" to have another baby lasted well over a year, but I was finally in a place in my life, where I didn't feel that itch anymore.  It was a good feeling.  The prospect of raising our family instead of building it further was exciting - watching the girls grow and develop into young women was something I was genuinely looking forward to.  Life was good, and it was getting easy.  There were no more diapers, bottles were long a thing of the past, everyone could dress themselves, feed themselves, bathe themselves, it was really getting easy!

While sitting on top of a picnic table at the beach, watching the kids splash in the water, Kevin leaned into me, nudged me with his elbow and said "maybe we should try for that boy."

I will never ever forget that one moment in time.  My heart nearly stopped.  Just the mere idea that Kevin would finally consider having another baby shocked the hell out of me, and the itch was back, and it was bad. It was all I could think about for the coming days.  It was all I could talk about for the coming days.  Of course, Kevin backpedaled a bit when we got home, claiming he wasn't 100% sure so maybe we should wait a month or two.  But by the grace of God and some other circumstances, we learned we were pregnant exactly one month after the day at the beach.

While a whole year has passed since that fateful day last July, and life has thrown us a curveball, I wouldn't change that moment for anything.  I wouldn't go back and ignore the itch, even if it meant not going through the stress and pain we've endured the last three months.  My sister in law asked me last week "if you could have a fairy come and erase everything, the Down syndrome, the pregnancy, your memories of it all, would you do it?"

The answer is easy.  No.  Yes, the last three months have been painful and full of stress, but they've also been loaded with the most beautiful joy I've ever know, the joy of a complete family, a fulfilled life, and an overflowing cup.

Even if a fairy came along and offered to slip that extra chromosome out of our lives, I don't know that I would take them up on it.  Sam's presence in our lives has brought change, it has brought wonderful people into our lives, and it's going to bring wonderful experiences and pride throughout the years.

My dear cousin sent us a card of well wishes last month as we celebrated our 10th wedding anniversary.  Inside the card, just below the signatures, she added with flair a note that said...."what a difference a day can make."  While her words were simply put, the truth of her statement speaks volumes.  One wedding day, four children and one extra chromosome later,  here we are.  I wouldn't trade one day for something better, because something better doesn't exist.