Saturday, June 23, 2012

Pool Party

"It's Saturday, it's hot and the house is as close to clean as it's going to get so let's get the heck out of here and go swimming!"  It took about a quarter of a second for the girls to comprehend what I was saying, and they were off and running, scrambling to locate swimsuits and beach towels.

This is going to sound sad, but I've never taken the girls to the public pool to cool off.  Sure, we've done swimming lessons there a couple times, but when it comes to taking a break from life to go for a swim, we're usually in search of a lake with a sandy beach.  But today, I really had no interest to dig sand out of everything and everywhere, so I opted for the cement "beach" at the pool.

Earlier this week, we were there for swimming lessons and it got me thinking about the day Sam is old enough to start swimming lessons.  Will he be able to swim on his own someday, or will he always use a lifejacket?  I guess it wouldn't really matter either way, as long as he was having fun in the water.  As I watch the lifeguards teaching the lessons, I wonder if they'll have the patience to work with Sam each summer, or if I've involuntarily signed up to be his pool pal.

Today, the girls really enjoyed themselves.  After MUCH hesitation, they even all jumped off the diving board!  Our oldest, who no longer uses a lifejacket, must have walked back and forth from the diving board to where I was sitting on the opposite side of the pool about fifty times to say "I'm not sure if I want to do it. I'm scared."  I just kept saying "do it, do it once and I bet you'll do it a hundred more times before we leave."  She gives me this 'yeah whatever mom' look, crosses her arms and marches herself away.  Not much time passes and she's back, giving me that 'I'm just not sure of myself' look.  So I say to her: "Do you see those lifeguards? (I point to both of them) If you go under the water and they think you need help, they'll jump in and save you.  They won't even climb down the ladder, they won't even think about it, they'll jump right into the pool and pull you to safety."

I sat back and watched her walk all the way to the other side of the pool, hesitate at the base of the diving board for seriously five minutes, step up onto it, slowly walk to the end, and perform the most beautiful cannon ball I've ever seen.  My eyes instantly sprung with tears.  I know it sounds silly, but I was proud.  It wasn't so much that I was proud of the fact that she could jump off the diving board, because that's really not that big of a deal.  I was proud of the fact that she faced her fear and dove in anyway, literally.

Oh how I wish I had the courage to face my fears.  I have some silly fears, like bats.  Don't even get me started on bats.  Kevin just doesn't understand why I'm scared of them, and I don't really know myself what I'm afraid of, but I'm deathly afraid of those little buggers.  I fear they'll fly into my hair and get tangled up, or land on my back and bite me, or land in bed with my kids while they sleep, or in bed with me while I sleep.  We've had just a few funny (or not) stories about bats around here, I could go on all day...but that's not what this is about.  It's about fear.  Insignificant or not, a fear is a fear is a fear, and I believe everyone has a right to have fear and a right to refuse to overcome their fear.  Period.

I've developed more fear in the last three months than I knew possible.  It's just fear of the unknown.  You know all these things they say could happen to kids with Downs, well it's not known that they'll happen to Sam, but I fear them anyway.
Look where Nala decided to take her nap.

I fear for his health and for his safety.  I fear for his sisters, who will undoubtedly always be on the lookout for Sam and how hard it might be for them.  I fear what people think about my wild emotions and the judgement that surrounds us these days.  I fear I won't do enough to give Sam the life he deserves.  I fear we'll lose friends who don't understand what we deal with on a day to day basis and that they won't accept Sam.  I fear the day everyone believes we're "ok" and they stop asking how we are.  I fear for Sam's future, life beyond high school and the teenage years.  I fear that I won't have the courage to step back, let go of these fears and just live for today.
The girls wanted in on the cat nap too!

Oh my do I fear.  So what should I do with my fear?  For one, I know I need to stop fearing tomorrow - it's not here yet.  The best quote I've heard is "Don't let the worries of tomorrow take away the joy of today."  So, for today, I'll enjoy the kids, the sunshine and the pool, and pray for a lifeguard to save me too.  After all, I never took swimming lessons.

Moms need therapy too

There are things that get me every time.  For instance, the song that Bruno Mars sings "Just the Way You Are"...I can't hear this song without breaking down in tears.  In fact, the girls and I sing it with the words changed a bit to be appropriate for our little guy.  The line that really gets me is "and when you smile, the whole worlds stops and stares for a while".  Sam's smile melts my heart, literally makes my heart ache, I love it so much.

Another thing that tugs at my heartstrings is when he does something that he's not supposed to be able to do.  Tonight, I was on the couch with him and when Kevin came and sat down next to us he said "Hey Sam, how's it going buddy?"  Right on cue, Sam started waving his arm up and down as if to say "hi dad, life is good!"  Did I cry when the girls did things like that?  I don't remember if I did or not.
I know Sam is my last baby.  I know that every first with Sam is the very last first that I'm going to experience with my children, with a baby.

This healing process is going fairly well I think.  I'm in a different place than I was the week after Sam was born, or even a month after Sam was born.  I felt nothing but sadness for the first few weeks after he was born, and as he grew and we got to know him, that sadness started melting.  Unfortunately, it's not like you "heal" completely from an experience like unexpectedly delivering a child with special needs.  Every now and then, some random thought will creep up on me and leave me in a heap on the floor crying again.  For instance, when I realized that Sam will very unlikely.  It brings back the memories of the day we found out we were having a boy and how proud we were that we would have a boy to carry on the family name.  It might end with Sam.  To think that he may never know the joy of raising children crushes me.

Or when I hear Bruno's song on the radio and he says "the whole world stops and stares for a while", how it brings back all my fear of what the world will think of Sam.  Will they give him a fair chance?  Will they judge him for something that no one had a choice about?  Will they love him like I do?  Will he always have people who believe in him and advocate for him in all he dreams of doing with his life?

There are days when I look at him and am so proud to be his mommy.  Days where I can't imagine my life without him.  Days where I see nothing but a beautiful baby boy who has so much potential, and so much to offer everyone around him.  But alway, ALWAYS in the back of my mind is that nagging reality that he was born with a disability, and that he may struggle with many things throughout his life because of it.  That thought never leaves my mind - even when all I feel is HAPPY.

With that said, thank GOD for my therapists. *smile*

No, I haven't hired a professional or anything, not yet anyway.  But David's mom provides great therapy for me.  And remember my ice cream sundae buddy?  Joe's mom provides therapy for me too.  Visiting with other moms gives me a sense of calm and normalcy in an otherwise confusing situation.  These other women help me feel normal, and ok with my emotions.  I don't feel sad very often anymore, but the hardest part right now is coping with the ups and downs of the emotions.  If I do find myself feeling sad, suddenly I'm feeling guilty for feeling sad, and then angry, all the while happy that my baby is here.  It's very confusing.  But my new friends, the other mothers, they lift me up when I'm down, and I hope I can do the same for them.  David's mom called the other night and I walked about 30 laps around our yard while chatting with her.  It's great that we can share the highs and lows with each other, express concerns to each other that other people might find nonsense.  David's mom and I are in very similar shoes right now, starting out with therapy programs and whatnot, and it's neat to exchange ideas on what our therapists and teachers are doing with the boys.  That way, I can use some of her ideas with Sam and vice versa for her with David, resulting in double the benefits of therapy!  David's mom is still very much in the emotional part of this healing process, as am I, and I love talking with her.  Kevin's always a good listener and willing to talk about things, but women understand women's feelings and thoughts slightly better.  Mother to mother, it's a special bond that I'm very grateful for.

Joe's mom came for a chat a couple weeks ago, and while I feel terrible for how I rambled on and on and barely let her get a word in edgewise, I'm grateful to her for letting me vent.  I think she's over the hardest part, because Joe is for the most part over those first scary years where health is such a major concern and now embarking on the more fun things, like preschool and all the other things a three year old boy likes to do!  We're so excited because next weekend, Joe's family is coming for supper!  We can't wait to play with them and visit some more!

We also had joined a support group from a neighboring city, and last week we attended the annual family picnic.  We met so many great kids and their families!  David and his family were there too!  One thing I did notice was that while at our table (the newcomers table :) ) we were talking all things Downs.  But when I walked around the picnic shelter and up to dish up a plate of food, the other tables were talking about things like who won the little league game, what week swimming lessons were taking place, the new restaurant in town and the weather.  What?  You mean you get to a point where the weather is more interesting than the worry of needing leg braces for walking and glasses to correct vision problems?  Seriously?  Sign me up!  One mom in this group had said to me that Down syndrome eventually fades into the background of your family and it's not so important anymore, and I'm still looking forward to that day.  Until then, I'm going to keep consulting my therapists for guidance and support, encouragement and bravery.

I also have to say, that writing this is very therapeutic for me.  Thank you for reading, and thank you for your words of encouragement and love - you are ALL essential team players - and we're always looking for more cheerleaders too so spread the word!

Sunday, June 17, 2012

Doctors and Therapists and Teachers, OH MY!

Sam is so engaged during his sessions,
it's great to see him connect and
make great eye contact!
Sam has had a busy couple of weeks as we get rolling with our summer therapy and special education schedule.  So many people have asked me what types of therapy you can do with a two-month old infant and how it can benefit them, and truth be told - I wasn't even sure of the answer.  So I asked and did a little research...and I learned.  Now I know. (a little bit anyway)

We are teaching Sam to suck on his hands to strengthen
the muscles in his cheeks and tongue to aid in speech
development down the road.
We meet with Sam's Occupational Therapist about every other week this summer.  Sam is a real trooper!  During our sessions, our OT flips him this way and that trying out some different exercises with him.  With a diagnosis of Down syndrome, it is known that there will be delays in Sam's development - delays in cognitive, sensory, motors skills and communication to name a few. The purpose of early intervention is to help ensure success later in Sam's life.  We take for granted the natural progression of other children when they move from rolling over, to sitting up, to standing and finally walking.  Sam will rock all of these everyday tasks someday, but it's going to take work.  For a really great explanation of the benefits of early intervention, check out this link - it covers all the basics for you.

On the 6th of June, Sam had his two month checkup.  He weighed in at 11 lb 2 oz and 23 1/2 inches.  He's finally  growing!  I can even say we are starting to see the beginning of what looks like a fat roll folks!  When it's fully formed, I'll snap a picture!  The doctor listened to his heart and lungs and everything sounded in tip top shape, which we were relieved to hear.  He's in the 25th percentile for weight and 50th for height, which is all new to us because all three of the girls were in the 90th and 95th percentile for height and weight most of their first years.  Babies with Down syndrome are generally born at a "normal" size, but tend to grow slower physically than many of their peers.  The average adult male with Down syndrome measures in at 5 feet 2 inches.  Sam could likely be taller than that, because although he has a different genetic makeup than you or I, he still has Kevin's genes, and well, at 6 foot 4 inches, Kevin will probably pass some of that height on to Sam.

Studies have shown that children with Downs have a lower basal metabolic rate, which means that over the course of a day they will burn less calories than other children.  Obesity is often associated with adults with Down syndrome and sometimes children as well.  It's important to watch diet and activity levels to be sure that extra pounds don't sneak up on Sam.  It will be our job to make sure that Sam's diet is good and his activity levels are high.  Of course, just trying to keep up with his sisters should help with keeping activity levels up there!

Sam also had to have a variety of vaccinations at this checkup.  Before we went ahead with any vaccinations though, I asked about the use of mercury to preserve the vaccinations.  I have heard and read that some people believe there is a correlation between vaccines with mercury and Autism.  I truthfully don't know if I agree or disagree with that theory, but with the fact that 1 in every 10 kids with Down syndrome can have Autism as well, I'd like to take every precaution possible.  In children without Downs, the rate is 1 in every 100, so it's a pretty significant increase in occurrence among kids with Downs.  I was informed by the nurse that our clinic and hospital are now using all mercury-free vaccinations, so check, one less thing to worry about.  That's not to say that Sam won't have Autism, but if mercury-free vaccinations are one way to help avoid it, we've done our part in that department.

Generally, the weeks that we don't have OT, we meet with Sam's special education teacher.  This past visit wasn't real great, as Sam was having an off day and didn't want to do much of anything other than put his head on my shoulder.  On a good day though, during his special ed meetings, we do fun activities with him like singing, playing peek a boo, introducing him to different sounds and textures and work more on some similar exercises from OT.

Everything we do with Sam is part of a set of goals that us as his parents, and his teachers and therapists have set for him.  We all have an idea of what we'd like to see him do this first year, but in reality, Sam's in charge of our pace.  If he decides there's no way in the world he's going to bring his feet to his mouth, that's that.  But there are other things he's already doing ahead of schedule, like rolling over and bringing his hands midline.

Each new stage brings new hopes and goals, and each accomplishment brings us a sense of pride.  Instead of reading the "text" books that tell us what he should or shouldn't be able to do, I think we'll let Sam write his own text book...I know there will be many wonderful chapters.

Thursday, June 7, 2012

Impossible Q's

In the moment after our pediatrician said "I'm sorry to be the one to tell you this, but it does appear that he has Trisomy 21", the first question out of my mouth was "what does that mean?"  Then I asked, "is it something I did?"  Next came "how are we going to do this?"

They told me: it meant that my baby had an extra chromosome, no it was most certainly not something I did, and all we needed to do for now was love him to pieces.

We learn early to ask questions, it's how we get what we want and learn what we need to know.  Who?  What?  Why?  When?  Where?  How?  We've asked, and have been asked, so many questions since Sam was born, and some of these questions are almost impossible to answer.

The tough questions our daughters have asked us...
Dad, do you have Down syndrome? When will I get Down syndrome?  How did Sam get Down syndrome?  When will it go away?  Will Sam go to school with us?  Can Sam play basketball when he grows up?  Will Sam be able to ride bike with us, and drive 4-wheeler with us?  Is Sam sick mommy?  How long will Sam live?  Will Sam get married when he grows up?  Will Sam be a daddy someday?  Could he get any cuter?  Why do people say Sam is special?  Am I special too?

The tough questions that friends and family have asked us...
How are you guys doing?  Did you know before Sam was born?  Do you wish you would have known so you could prepare yourselves?  How are you holding up?  How is Kevin dealing with it?  How do the girls do with all of this?  How do you do it?  How are you dealing with the stress?  Why are you sad?  What are you doing to help his development?  What can I do?  Is there anything you need?

The tough questions we ask ourselves...
Is this really happening?  Why am I feeling sad?  What am I going to do?  How am I going to do all of this?  Will it be enough?  Will I be patient enough?  How can I be an advocate for Sam?  How can I protect him from all these medical scares we hear about?  Why did this happen to our family?  When will it hurt less?  When will I stop crying altogether?  Will the guilt of feeling sad ever go away?  What can I do in Sam's life and with Sam's life to better this world?  Will Sam always know how much we treasure him?

The tough questions we ask God... (pardon my language, but this is an actual conversation I had with God earlier this week)  What the hell were you thinking?  What made you think that I had the strength to handle this?  Why on your green earth did you do this to Sam and to our family?

The questions we should be asking God (the questions I strive to have the courage to ask after I've questioned God at all)...
Will you give us the strength and courage always to give Sam the best care possible?  Will you be here for us during the scary times?  Will you smile with us when he succeeds?  Will you give Sam dreams for a life filled with love, adventure, excitement and accomplishment?  Are you sure you chose the right family for this precious boy?  Will you forgive me for questioning you?

I'm preparing myself for a lifetime of questions.  With each new stage of Sam's life, there will be questions about what to expect, what to do, how to handle life with Down syndrome and so on.  I know that I need to stop questioning certain things, and begin trusting that the answers will find their way into our hearts and we'll just know exactly what to do to give Sam the best of everything.

Wednesday, June 6, 2012


When we think of family, we think of our mother, our father, our children.  We think of our aunts and our uncles, our grandmothers and our grandfathers.  We think of our cousins, our cousins children, our cousins cousins.  But by definition, family isn't only based on an ancestral lineage.  One part of a definition of 'family' that I found was this:

                    FAMILY:  a. A group of like things; a class.
                          b. A group of individuals derived from a common stock

When you are an electrical linemen, the men who build line beside you are like your brothers.
When you belong to a crafter's group, the women who yield tape runners next to you are like your sisters.
When you go to church, the christians around you are like your brothers and sisters.
When you are a daycare provider, the children who come to your home for care are like your children.
When you go to school, your classmates and teachers are like your family.
The list goes on and on...

Some families we are born into, some families are chosen, and some are chosen for us.

This past weekend, we invited a family who has a son with Down syndrome, a beautiful little boy (David) born just one month before Sam, to our home for dinner.  We enjoyed some homemade pizza, fresh veggies and the first watermelon of the season.  They have four boys altogether, and the three older boys had a blast playing with our girls.  They played board games, played on the swingset, picked eggs from the hen house and pet the bunnies.  The whole family tried a ride on the 4-wheelers, and I think it's safe to say we all had a great time!

New Buddies David and Sam
We put our baby boys side by side to take some pictures, and David's mom and I agree that they could certainly become lifelong friends.  It's true, we met under some unfortunate circumstances - our sons have Down syndrome.  I typed in an email to her: "I wish I'd never met you, but I'm really glad I did."  If it weren't for our babies, our paths would likely have never crossed.  I'm so glad we met, because David's parents are pretty wonderful, and I'm so glad to have new friends to lean on during the tough times of this journey as well as the good - celebrating milestones and such.

New Friends!
We have joined a whole new family - a family we didn't even know existed just a few months ago.  We are a family of parents in the same shoes.  We are a family of brothers and sisters of kids with Down syndrome who know what it's like to have a sibling with DS.  We are a family with love to share with everyone, and hopefully knowledge to pass along so this world becomes more and more accepting of all people, with our without Downs.

Believe it or not, 6,000 babies are born with Down syndrome each year in the U.S.  That breaks down to over 16 babies a day!  This family that we've discovered is actually quite large, and I'm excited to meet and get to know more of it's members!