Monday, April 30, 2012

These Shoes

One Month Old!!
So Saturday night I took the plunge and joined a Down syndrome support group.  It wasn't until I was about five minutes from my destination that I realized I was about to go to a place I've never been, to meet people I didn't know.  I pulled in with four minutes to go, walked into a Pub (if you know me, you know I don't frequent the Pubs all too often) and was greeted by a full house, loud music and the smell of greasy food.  I stood inside the door for about two minutes before tapping on a woman's shoulder and said "I have a weird're not here as a part of a large group of parents are you?"  "No," she replied.  What in the world was I doing here?

I stood on tiptoes to see over the mass of people and scanned the room, and realized in short order that I didn't have a clue what or who I was looking for.  The woman I had talked to looked at me with a perplexed look on her face and I quickly said "I'm here to meet people I don't know, so I don't really know who I'm looking for."  She just smiled and turned back to her friends.

I stepped out into the entryway where it was much quieter.  I dialed the number of the lady who had invited me to come and she said they were on their way, so I told her I'd wait inside the entry for her.  I sat and waited.  I eyed up everyone who walked in the door, and asked myself - "is she the mother of a baby with Down syndrome?"  "Do they look like they have a child with Downs?"  "Is he the father of a little one with Down syndrome?"  I realized it was ridiculous to even ask myself that, there's no way to look at someone and know this.  So I stared at my shoes instead.

Then, in walked a woman who looked at those of us waiting in the entry and asked "Amanda?"  Finally...I didn't feel so lost anymore.  She led me to the back room where the group was gathering.  Within minutes, I met a family who had a baby with Downs just a month before Sam was born, two families with four year old boys who have Downs, yet another family with a girl with Downs, and so many these were people I could get to know.

We sat and shared stories for over three hours.  We talked about the moment we "found out", the health struggles that some of the children had shortly after birth and the adjustment we had to make when we brought our new babies home.  We talked about triumphs, like the little boy who learned to walk (just before he was three) just in time to be a ring bearer in a wedding.  We talked about breastfeeding, pumping, pumping while driving (cause you'll do whatever you have to do to get the job done!) and sore nipples.  One proud father proclaimed his son with Downs is quite a "chick magnet" - I love it!!

For three hours, I sat with a group of wonderful people, who wear the same shoes we're wearing.  I've been worried about these shoes, I've been afraid of what people might think of these shoes.  They're not exactly the "in" style, you know?  For three amazing hours, I could relate to the birth stories of these other moms, to the emotions they felt - everything from pain, to denial, to absolute joy.  One mom said that eventually, the fact that you have a child with Downs just fades into the background of your family.  I like the sound of that.
The shoes we wear these days

Three glorious hours of babbling on about my little guy, and not feeling like I was boring someone with the details, or overwhelming someone else with what I was feeling.  We have a remarkable support system at home with our family and friends, this was just a different kind of support.  One short month ago, I had no clue in the world that I'd be joining any sort of support group any time soon, but boy am I glad I did.  If it weren't for Sam, I'd have never even tried on these shoes - and you know what?  I'm starting to love the way they look.  Our family is going to walk many, many miles in these shoes and I can't wait!


mo-ment : noun
     a : a minute portion or point of time : an instant 
     b : a comparatively brief period of time : a second

There are moments in everyone's lives that you never, ever forget.

I will never forget the moment I tossed my cap in the air at graduation, or forget the moment I decided to drop out of college.  I'll never forget the moment my phone rang and the voice on the other end said "Hey, this is Kevin."  Nor will I forget the moment I realized Kevin was "the one", and the moment we said I do.  The moment our first daughter was born, and then our second and finally our third,...these are moments that no one can take from me.

More recently, new moments have occurred that I couldn't forget if I tried.  For instance, the moment last summer while Kevin and I were sitting on a picnic table at our favorite public beach, watching our girls splash in the lake, and Kevin nudged me with his shoulder and said "maybe we should try for that boy."  And then the moment a month later when two blue lines showed up on the magic stick.  And then one of the greatest moments we've ever experienced was when the ultrasound tech said "well, this one's a boy."

And then there's the moment Sam opened his eyes for the first time and we realized we had a very special baby on our hands.  As scary as that moment seemed then, now it's a moment we've tucked away in our "special memories".

A moment is so short, but can have so much impact on a life.

It's so hard to believe that Sam is already one month old!  He'll have been with us for 2,592,000 "moments" as of 12:08 today.  (assuming a moment is about a second in length.)  We've had some really great moments, some really scary moments, some sad, some happy, some angry and some beautiful moments.  All of these moments have been a part of the healing process for us.  And we're getting there, we are healing.

It seems like I spend a lot of time trying to convince myself that everything is ok, and that everything will be fine.  I suppose I am.  I wonder what else I would do?  Right now, everything is ok, everything is fine.  In this very moment, Sam is on the living room floor kicking and keeping a close eye on his sisters.  In this very moment, we are a normal family - one happy, healthy family.

There may be a whopping 86,400 moments in a day, and that may seem like a lot.  At any moment, you might put off reading a book to your kiddos, or wait until later to tell your loved ones what they mean to you.  You might take a beautiful moment for granted because you know there are so many more moments yet to come.  Every moment is precious, be it good or bad - it's a part of who we are.  Make a promise to yourself...and enjoy every single moment.  Each one is precious and irreplaceable.

Wednesday, April 25, 2012

One BIG week!

In the last seven days, Sam has had some BIG things going on!

First, last Thursday, a few members from his therapy team came to visit and evaluate him. His occupational therapist twisted him this way, rolled him that way and tested his strengths and weaknesses in several areas. I'm proud to say he's a tough little guy, and is doing everything she expected him to do. His special education teacher was here as well and explained to me the process of the therapy adventure we are embarking on. After the initial evaluations, his team is going to put together a plan of "goals" for Sam for his first year. These goals could include gross motor skills like rolling over, sitting up, standing and even walking. We'll also work with him on some fine motor skills like grabbing and holding toys, self feeding and more. You might be reading this wondering why in the world he'd need therapy to accomplish these things that other babies just do in the first year. With Sam's Down syndrome, he's likely to move through these stages at a slower pace. We've been told to expect him to do everything a bit later than a typical child would.

Along with what his therapy team strives for, Kevin and I are also a big part of this plan. We will work in partnership with his team to determine what we hope for him this first year, and what we would like to see him capable of by the time he reaches his first birthday. It's a little scary to think that he'll need help to learn these things, but we are so grateful to have people in our corner who know exactly what they're doing. Our daughters did everything "on time" and it's going to take patience and understanding on our part to work with Sam and celebrate with him at each and every milestone.

Speaking of milestones...we've reached one already! Remember how I mentioned Sam would be "slower" than the average baby to do some things like rolling over, sitting up and standing, etc? Well, last Thursday, Sam knocked our socks off and rolled over! The first time he did it, I thought it was a we rolled him back over and the little stinker did it again! We know it's not a fluke, because he's rolled from his back to his tummy twice, and from his tummy to his back five times in the past week. I cried some huge tears of joy with that first roll - it was like Sam was trying to tell us - "See?!? I'm going to be able to do so many things - you just watch! Stop being afraid, I'm healthy and I'm strong!!" I didn't realize how badly I needed to see him do this - I can't even explain the pride that I felt...and this is just rolling! Imagine when he takes his first steps!!

The very next day, Sam started sleeping through the night, and he's been doing so consistently ever since. He's such a good baby - so mellow and relaxed, and hey - I'm not going to complain about a few extra hours of sleep!!

Denyce, Jodi and Sam at the shower
On Saturday, some very good friends from our from church hosted a baby shower for Sam. Many friends and family were there offering their love, support and encouragement. Our friend Jodi read the following poem....(not a dry eye left in the room when she was through)

Down Syndrome Creed - Author unknown

My face may be different, but my feelings the same
I laugh and I cry and 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 this family I've chosen will help me get started
For I'm one of the 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, but at my own pace.

I had never heard this poem before, and after the first five words were read, I knew it wasn't your average baby shower poem. The words instantly touched and spoke to me.  Of course, it wouldn't be the last time I heard that poem. Later that day, Kevin's cousin gave us a beautiful gift - the Down Syndrome Creed in a lovely frame to hang up in our home. We were advised to place it somewhere we could stop and read it every day if needed, and that is exactly what we've done.

Payge and Sam on their BIG day
As if that wasn't enough for one little guy in one week, Sunday was probably the biggest day of all. On Sunday, April 22nd, Samuel was baptized into the family of God. It was an extra special day, because he was baptized alongside his beautiful big cousin Payge, just five weeks older than Sam. Sam has four amazing godparents, who love and adore him so much! They each have a special place in our hearts, because we know they will always be in Sam's corner with words of encouragement, love and support!
Sam's godparents - Sarah, Kim, Dan and Linda

Proud daddy and Sam caught snoozing!
Later that evening, as I was busy cleaning up after dinner, I overheard Kevin talking to Sam in the living room...and the one-sided conversation went something like this: "Well Sam, today was a big day for you! You're baptized, and sealed with the cross FOREVER. That's a big deal man." And then I heard the unmistakable sound of Kevin placing a kiss on his son's head.

Monday, April 16, 2012

One Day at a Time

You will never believe what I read today. 80 out of every 100 babies (that's 4 out of 5!!!) conceived with Down's do not survive. Many are miscarried, or do not make it to term because of their health, or if they do make it to term - they cannot survive outside the womb because of their health. That means that if we flipped a coin on Sam's life - 80 out of a 100 times, he wouldn't exist...he wouldn't be here.

These past few days have been really good - like REALLY good. I have not shed one sad tear for four days straight. I'm seeing my son and our path in a whole new light. I'm not naive nor am I in denial, I know we've got some tough days ahead of us - but today is Monday, and that's all that matters. I'm reading a new book called "Bloom" by Kelle Hampton, and it's a memoir on the first year of her daugher's life with Down syndrome. This book has really enlightened me on the everyday stuff associated with Down's - it's not a textbook that warns me of this ailment or that concern - it's just a normal mom who felt everything I feel. She makes me feel ok with the emotions we've experienced - not to mention she's hilarious, with her ass-kicking attitude toward's Down's. I can only pray that I can be the advocate for my son, that she is for her daughter - truly amazing!

I've said "we're taking it one day at a time" and we are. I have to remind myself of this...daily. There are so many things that the "textbooks" are telling me to worry about...

The books tell me that Sam has an increased risk of developing leukemia as a child, but today he's cancer free.
The books tell me that Sam had nearly a 50% chance of being born with a major heart defect - but his heart is PERFECT.
The books tell me that Sam could have had gastrointestinal problems - but he can poop like it's NO ONE's business!
The books tell me that Sam might have vision problems down the road - but when he looks me in the eye, I know he sees me,
and although that could change, today - he sees as much as he should at 3 weeks old.
The books tell me that Sam may have dental problems - but for today, he has a perfect toothless grin.

That's not all....the list goes on and on. But you know what? - today, Sam is healthy. Sam is a hungry little wiggle worm, and doing all the things we expect him to do as a newborn baby. He kicks and flails his arms, he follows things with his eyes, he startles when his sisters squawk and scream - today, life is good. One day at a time. Today. Tomorrow, well - let's talk about tomorrow sometime after midnight.

Sunday, April 15, 2012

How we knew...

Since Sam arrived, I've had many people ask me if we knew before he was born that he had Down's. The answer is no. We never did any testing during any of my pregnancies, because quite frankly...what's the point? For us, it wouldn't have changed anything and with the possibility of false positives, I didn't want to risk worrying over something that wasn't even there. What's funny is that during this pregnancy, I had a total of 6 ultrasounds - all plain old ultrasounds with the exception of the one time the tech said "well, we have a few minutes left, would you like a 3D image of your little guy?" Are you kidding? Of course I would! So, she left the room to grab the appropriate equipment and came back. By the time she had it all plugged in and ready to go, Sam had one entire arm and his other hand completely covering his face. I think this would have been the only ultrasound we may have discovered some "visual suspicions" that he had Down's. So, I (thankfully) spent the entire pregnancy almost worry free, believing everything was perfect and "normal."

So, how did we know? People look at Sam and say "how do you know he has it?" Until we receive his blood test results, I suppose we won't know anything for sure....but what we saw immediately and what the doctor pointed out to us was:
*his eyes are slightly almond shape and slant upwards just a bit (this is ALL I saw right away)
*his ears are set slightly lower on his head than some other newborns
*he has a "simian crease" on is right hand - meaning that he has a crease that goes all the way across his hand rather than two that sort of overlap.
*the back of his neck and head are slightly flatter and have more "fleshy skin" than other newborns.
*he has less muscle tone than other newborns, meaning he's kind of "floppy" (although I really beg to differ with this one, he is one strong little dude!)

That sums up the "typical" visual indicators that nurses and doctors look for when they suspect a baby has been born with Down's. As Sam grows, some of these visuals will change - either lessen or worsen. What's funny though is that when I look at him, it's hard to see any of these things. Now as his mom, I suppose a part of me doesn't want to see it, but I also believe already that the love I feel for him is so strong I only see beauty in it's most perfect form when I look at him. He looks into my eyes like any other newborn and he grasps my fingers so tightly it's as if he'll never let go. He is so perfect, just WAIT until you meet him!

Saturday, April 14, 2012

Love is Blind

After the realization that Sam had Down's Syndrome had sunk in, we shared the news of his arrival and his condition with everyone. The outpouring of love and support was overwhelming. But the first time the girls came to meet him at the hospital, we couldn't bring ourselves to tell them. We just wanted them to have fun meeting their brother....they had waited so long and were so excited that he was finally here. They couldn't stop kissing him, and touching him...and truth be told, they were flat out fighting over who got to hold him next, who got to hold him the longest and who loved him more. It was pretty obvious that they were instantly in love with their little brother.

But after they left that first day, I told Kevin "we have to tell them." We decided we'd let them skip Sunday School on Sunday morning so they could come and hang out with Sam instead. We used the book "We'll Paint the Octopus Red" as a model to break the news to them. Kevin asked each of the girls what they wanted to do with Sam when he got bigger. They said they were going to go 4-wheeling with him, play legos with him, teach him to color, read books to him, play games with him, teach him to play basketball, and many other things. They had all sorts of ideas. Then Kevin asked a tough question: "Do you girls know what Down's Syndrome is?" Our oldest wrinkled up her nose and said "what's that?"

We then told them that Sam has Down's Syndrome, and that while he's going to be just like any other little brother, he's going to need a little extra time and help to learn how to do new things. We explained that it will take patience when we're teaching him something new.

Worry clouded their little faces...for about a minute. Sure, they asked questions that day, and they still do today. But when you see them look at their little brother, all you see is love.

Love is blind. The love they have for their brother is so strong that they see right past the little detail we've spent so much time worrying over. Even with the knowledge that Sam is a little "different", they still fight over who's going to hold him first, who's going to hold him the longest and who loves him more. I don't think they've walked past him yet without stopping to give him a little peck on his peach-fuzz-covered head, or see if he'll grab ahold of their finger. (which we've decided is his way of telling us "I love you")

I can only hope that Sam's love for me is blind as well - that he'll see past the mom that cried instead of sang when he was born. I pray he'll forgive and understand all the emotions I've felt, and just know that I love him more than words can say and that he's my FAVORITE little boy in the WHOLE WIDE world!!

Sam has taught us all a lot already, and I truly believe he's going to teach the world to love blindly.


Sam is two weeks old. In these past two weeks, I don't think a day has passed where the tears didn't sneak up on me. It's hard to explain the emotions to someone who hasn't been in these shoes....I'm sure some are asking why I would be so sad. I have a beautiful baby boy, what am I crying over?

Tears come in all shapes and sizes, and they flow for all sorts of reasons.

When Sam was born, Kevin and I shed tears of complete joy - our SON was finally here and in our arms!! Our happiness was so great the tears flowed freely and fearlessly.

Then came the tears of shock...our child had Down's Syndrome. These tears flowed steadily for hours on end.

When the tears of shock slowed to a trickle, the tears of fear burst forth in a whole new wave of emotions. With these tears, came hundreds of questions for the nurses and doctors - some questions could be answered, some won't be answered for a while yet. Fear gripped us so tightly that we could hardly see.

With answers to some of our questions and a little knowledge under our belt,...then came the tears of pity. Yes, we spent time feeling sorry for ourselves. We were sorry and worried about the obstacles we as parents would face. But soon, we realized we had no reason to pity ourselves, so we pitied our son.

These tears were just sad tears. But he was so beautiful, they didn't last long.

Then came the angry tears...after we brought Sam home, I had a lot of time on my hands to sit here and think. The more I thought, the more I cried...the more I cried the more angry I became. I was angry with God. Why did He do this - why did He choose this path for our family? "DAMN IT!!" I would yell...Kevin yelled with me, and we'd cry some more.

But soon we realized there was no reason to be angry with God - He chose this path for us, Sam IS a huge blessing to our family. Kevin even said "to be angry with God, is to say that this is all a mistake." Sam is no mistake...he was wanted and prayed for, and he is here.

But still the tears flow.

Today, two weeks after Sam was born....tears of happiness welled in my eyes and flowed. I was sitting on the couch with him, and all three of his big sisters were on the floor playing with an antique Hungry Hippo game they dug out of the attic. They were laughing and shrieking with delight - making so much happy noise I could hardly hear myself think. I glanced at Sam and he looked into my eyes and he seemed to be asking "really!?!?" I looked back at him, and said "really." And oh how I smiled.

Friday, April 13, 2012

The BIG Plan

I'm a planner. Anyone who knows me knows that I'm not satisfied until every little detail has been scrutinized with great care. It's sickening, and I know it. The week before Sam was born, I had EVERYTHING planned! His birth was a planned induction due to a medical condition I had called Polyhydramnios (meaning I was carrying too much amniotic fluid). I knew that I was going in Friday morning at 6, so I had it all planned and mapped out in my mind how the day was going to go. I had made all the plans for our girls - where they would be, who would pick them up, when they would arrive at the hospital to meet their was all planned out. I'd planned to read during labor, and have an epidural. I'd planned for Kevin to wear his lucky "we're having a baby today" shirt (a shirt that he wore at the hospital each time we had a child), I'd planned what I would wear as soon as I could change out the hospital gown. I'd planned what the kids would eat, where they would sleep, and what they would wear while I was in the hospital. I had even planned the first page of Sam's scrapbook, even though there weren't even any pictures yet. Earlier in the week, I had created a plan to make sure all the laundry was done, the house was clean and ready to bring home a new baby. Planned out, all of it!

Not only had I made plans for me, and for Kevin and the girls...I'd planned quite a bit for the little man too. Maybe it was more of a dream than a plan...dreams of him hunting with his dad, racing his sisters on their 4-wheelers, being the star of his high-school basketball AND football team..all sorts of dreams and plans.

And I remember my mom sort of chuckling at my plans, and telling me to stop worrying, to stop planning. And I specifically remember saying to more than one person..."I shouldn't be doing all this planning....God's going to laugh in my face." What I mean by that is that I really need to just let things come as they will...there is a plan, and I'm not in charge of it.

And I wasn't.

The day did NOT go as I had planned. I didn't touch my book. Kevin wore a different shirt. Getting my epidural hurt like hell. My labor went so fast the doctor almost didn't make it in time. The day took on a direction of it's own....and I was doing ok with it, letting things "come as they may". Some of the plans I had made suddenly weren't such a big deal. But when Sam arrived and our pediatrician said "I'm sorry to be the one to tell you this, but it does appear that he has Trisomy 21"....well, THAT was NOT a part of my plan.

Suddenly, all my plans for him flew out the window. Most of it was out of fear, because we didn't know the first thing about Down's Syndrome. We didn't know if he was facing a life threatening condition or if it was just the slant of the eyes that he'd ever have to deal with. We were clueless.

I spent a lot of time that first day mourning the death of these dreams. The hospital gave us some "light reading" which only really made things worse. We sent Sam to the nursery, shut our door and fell into each others arm bawling our eyes out. We apologized to each other, though there was nothing to apologize for. We let fear consume us and shake us to our core.

Just before we gave in to exhaustion, I looked at Kevin and said "I never even said goodnight." So, he wrapped me in my robe and we hobbled across the hall together to see our son. Without "scrubbing" in, they wouldn't allow us to go into the we stood outside the big glass window and stared in at the most beautiful boy in the world. I kissed my hand and touched the window, and then I sent him an "air hug". (our oldest daughter invented our air hugs) I smiled, hobbled back to my room and slept.

I woke up the next day with a smile on my face and a new dream in my heart. Because even with the little knowledge we gained that first day about Down's Syndrome, we realized that our son would hunt to his heart's content, would most likely win every 4-wheeler race, and would most certainly enjoy basketball AND football.

Tuesday, April 10, 2012

Finally here!

On Friday March 30, 2012, our lives changed forever. I realize that with the birth of any child, one's life is drastically changed....but when our little man arrived, we were in for quite a surprise. My labor and delivery was very easy, and our son was finally here! After a few minutes with the nurses, he was handed over to Kevin and I. With tears in our eyes, we were meeting our son for the very first time. But my heart was screaming that something didn't seem right. I searched his face for signs that he looked like his dad, or one of his proud big sisters....but it was wasn't there. I felt panic rising throughout me as I looked at Kevin and said "Does he look funny to you?" I'm ashamed to admit that those were some of the first words out of my mouth when he was born. Kevin asked what I meant, and I said..."he looks like he has Down's Syndrome".

The nurses came back in the room, and I said I had a strange question to ask. I mentioned that he didn't resemble his sisters, and I asked if they thought he looked like he had Down's Syndrome. My delivery nurse put her hand on my shoulder and said "yes, he does. We've called your pediatrician and he's on his way now."

I don't recall much of the next several hours. It was a whirlwind of emotions: sadness, shock, elation, excitement, fear, happiness, wonder, anger, and did I mention fear? We cried and we cried, because all of a sudden the son that we had dreamed of for 9 months, didn't exist. In his place, was a beautiful baby boy who just happened to have an extra chromosome 21.

For those of you who aren't sure what Down's Syndrome is, here are some nuts and bolts;
The medical term for Down's Syndrome is Trisomy 21. Babies that are born with Down's Syndrome have an extra (3 instead of 2) chromosome 21 in some or all of the cells in their body. Chromosomes are a tiny thread-shaped thing inside our body that tells us how to grow - they tell us what color our eyes will be, what color our hair will be, and if we will be short or tall. Chromosomes dictate how our faces will look, how our voices will sound and many many other things. When a child is born with an extra chromosome 21, it "mixes up" these direction a bit. Because of this, babies born with down syndrome might look a little different, and they will learn differently also.

Now, back to our beautiful baby....he needs a name! We had forgotten our list of ideas on the fridge at home, so we just started digging in our memory for the names that we liked best. But nothing fit - he suddenly didn't look like a Loren, or a Philip (like we had talked). Literally out of the clear blue sky, I said "what about Sam?" Kevin's response was "where did that come from?" I honestly didn't know. But Kevin looked up the meaning of Samuel and it brought tears to our eyes. Samuel as a boy's name is pronounced SAM-yoo-el. It is of Hebrew origin, and the meaning of Samuel is "God heard". Also possibly as "requested of God", "God's heart" or "God's name". Well, there you have it. We had three beautiful daughters and had asked for a son, and here he was. And we're learning each day that God had heard of other things we needed in our lives, and he's giving them to us through Sam....more on that later. : )

Though it took some time, we realized he is perfect in so many ways that matter, and we love him more than we thought possible. The emotions do sneak up on us every now and then, but all in all, we just see him as a lovable, huggable little boy - and I wouldn't trade him for the world.