Real Life: Part II

I'm a second child.  My sister is the planner, the perfectionist and the one who thinks before speaking.  I try to be these things, and sometimes I pull it off - but most of the time I don't.  When I write it is mostly a stream of  thoughts followed by a quick push of a button labeled "publish post."  I may read through it quickly to look for obvious errors, but I'm not much of an editor.
So...

After I posted "Real Life" last night I realized I needed to add some thoughts.

Yes, real life is unpredictable and messy.  If you think you know someone who has it all figured out, you probably don't know their whole story.  Everyone has a struggle of some kind.  Everyone.  Don't even second guess this.  Some blogs or websites make it appear that it is possible to live a perfect life filled only with beautiful words and images.  The truth is you can't cut & paste, crop, edit or omit the messy parts from real life like you can on a blog or website. 

However...

Sometime real life is so beautiful that a picture, or the perfect words can't even describe it.

But I'm going to keep trying.

Today I am honoring some of the beautiful moments in my real life. No editing. No posing (except for one).  Just moments that bring joy to my soul. If only I could catch them all ...

Just in case someone happens to be driving by my house today... I am looking out the window at my son who is wearing a diaper, rain boots, a coat and a hat and just jumped into the lid of the sandbox that filled with water last night. 

It is 50 degrees.

Just found out that some of Colin's dinosaurs also went for a swim ... time to get back to my real life. 

Have a wonderful weekend!

Real Life

Sometimes I worry that what I write, or the pictures I post, make it look like our family is perfect and that we've got it all figured out.  This is not true.  We have temper tantrums, screaming fits, days with no vegetables, days with only vegetables, piles of laundry that the kids climb like mountains, and messes that never seem to get cleaned up.  I have trouble coordinating Luke's therapy, with Gwen's activities, and Colin's need for one on one time.  Not to mention finding time for myself.  Some days I feel like I have it all together and other days I have to remind myself that ...

this is real life. 

Because of this thing called, life,  I often find it hard to blog.  I don't care to have sponsors or advertising on my page.  I don't try to make money off of what I do, so it's easy to put it on the back burner and get caught up in everyday life.

Today I get an email from a friend who just found out they are pregnant with a baby that will have Down syndrome.  It kicks me back into gear.  I want to get our story out there.  Luke is not a tragedy and I want his story to give others hope.  I know that most people (90-94%) terminate pregnancies after finding out they are carrying a baby with Ds.  I would venture to guess that most of those families make that decision based on ignorance and/or fear.  If everyone knew a person with Down syndrome, would they make that decision?  I don't know.  I'm rambling now, but it just make me proud to know 2 families right now that are expecting children with Down syndrome.  Don't fear. 

Anticipate.

Trust.

Real life is filled with challenges.  I remember feeling like I couldn't handle raising a child with Down syndrome.  I felt the challenge was going to be too much, and that it was going to ruin my life.  How wrong I was.  I didn't trust.  We are stronger than we think.  We can handle, and even embrace, situations that we didn't choose for ourselves.  Happy times are easy, but are also shallow in some ways.  Challenging times show us who we really are... what we are capable of.  I write these thoughts for others, but also as a reminder for myself.

So, here is to real life.  Messy and unpredictable.  Clothes that don't match. Kids in their pajamas at noon. Toys everywhere.  Probably diapers waiting to be changed.  It may sound crazy, but these are some of my favorite moments.

 

 

Luke in the backseat of a bus ... 

Gwen giving a piano lesson ...

I found you Mom!

Hair that needs to be cut ...

Hide and seek ...

Pajama days ...

Another piano lesson ...

Real life may seem unpredictable and unorganized, but it is also inspiring. 

As I have said before, this is the gift that Luke gave to us. 

Unpredictable joy.

Happy Friday!

3.21

3.21

(3 copies of the 21st chromosome)

World Down Syndrome Day

I just deleted everything I have been writing, because I don't know how to express what I'm thinking right now.  Luke is lucky.  He was born in a place where he receives Physical Therapy, Occupational Therapy, and Speech Therapy.  Luke will receive Medicaid to help him with medical costs throughout his life.  He will get housing assistance, food assistance, and be eligible for job programs as he grows up.  Luke is also surrounded by people that love him and want him to be successful.

I wish I could say these things for all children around the world who have Down syndrome, or any disability, but I can't.  It's sad and depressing to know that there are many children put in institutions and hidden away before they are Luke's age.  Luke is thriving.  But I can't imagine he would be doing this well if he didn't have so many people working with him and encouraging him.  No child will ever reach their full potential without love, support and resources.



Luke at Physical Therapy

I know that there are people from Canada, South Korea, Australia, Russia, Germany, United Kingdom, India and Brazil (among many others) who read this blog.  I don't know who you are, and I don't know if you have a story to tell - but if you do, please consider writing to me or commenting on this post.  I would love to learn more about Down syndrome around the world from you, and not just from the internet.



Every month Luke goes to music therapy with some of his friends.  I decided to add these photos after reading a few profiles on Reece's Rainbow page where music was mentioned.  As a music educator myself, I love the reminder that music is something children all over the world love and are inspired by.








Happy World Down Syndrome Day!



Happy Birthday to you, you live in a zoo ...

I know.  I know.  He turned 1 almost 2 months ago.  What can I say.  Life was in a phase of "one step forward and two steps back" when Luke turned one.  Lucky for us, one-year-olds are easy to please, and our older kids were happy because they got to eat cake and sing "Happy Birthday to you.  You live in a zoo ..." as many times as they wanted since Luke didn't protest.  Just wait kids.  Luke is going to run the show before we know it ... or maybe he already is.

Well, here is what a birthday looks like with no planning :)

A blue candle that was used when Colin turned 1.

A piece of cake from the local Co-op because I didn't have time to make one.

Handmade cards from his siblings and cousins.  

A happy boy, surrounded by love.

Boys

My husband is the oldest of five boys.  I am the younger of two girls.  Needless to say, we have different comfort zones.  I wasn't sure what to think when I found out our #3 was going to be a boy.  I was ok with having one boy, but two?!  I had my girl name picked out and ready to go.  I was 100% sure that this baby was a girl.  I thought it would be perfect with Gwenyth as the oldest, Colin as the only boy, and then "Audrey" as the youngest.  Each would have their own special place in our family. 

Then along came Luke, and I can't picture it any other way.  These two boys are quite the team.  I was so worried Colin would be jealous of Luke.  It's funny to think back to those worries now when I see them together.  Colin didn't need to be the only boy to be special.  He is special because of who he is, just like Luke is special because of who he is.

I am still learning how to raise these little creatures know as "boys."  The love they give to me, their Mama, is complete and uninhibited.  The passion they have for moving, running and jumping is beyond anything I had imagined.  And then there are the moments of calm.  These two boys seem to crave the warmth and safety of a hug, even if it only lasts for 10 seconds before they need to move again.  They smile a special smile for me.  A smile that I know will not always be for me, but I will take it while I can.

I ran for my camera when I came into Luke's room and found my boys reading together.  I was afraid I would miss the precious moment I happened upon.  I didn't need to worry.  Colin had a plan... 

Luke wants to read with Colin, but Colin doesn't share animal books, so he gives Luke his own book and puts it on the floor.  Luke is still not interested and continues to look at Colin's book.  In the last picture Colin has put his book down and is reading Luke's book to him.

Reflections and Resolutions

As I rocked Luke to sleep tonight I found my mind wandering to New Year's Eve last year.  It was a low key evening, as usual, and we ended up sitting at a restaurant visiting with friends.  I was 36 weeks pregnant and I remember part of the conversation went something like this. 

"So, is the baby moving a lot?"
"No, not too much.  I do kick counts at night a lot.  He's such a laid back baby, and has been the entire pregnancy."
"You are so lucky!"
"I know!  His heart rate is always 120.  Every appointment.  He is just so calm and content.  I figure I deserve an easy baby after Colin!"

Exchanges like this happened multiple times a week during Luke's pregnancy.  People (including myself) tend to ask pregnant women how they are feeling and if the baby is moving a lot.  Luke really didn't move much.  It's interesting to look back on those conversations now.  Even when I was in labor Luke's heart rate was so low the nurses and our doctor were concerned that he wasn't reacting correctly to my contractions.  I told them (while in labor) that he was "probably asleep...he is such a relaxed baby."

**As a disclaimer I should say that I have read about, and talked to, many other women who have children with Down syndrome and it seems that fetal movement is NOT an indicator of Down syndrome.  Everyone has a different experience with fetal movement. 

This has been the longest and shortest year in my life.  It has been "The days go slow, but the years go fast" feeling.  The learning curve has been high, but a super cute and lovable subject has made it worth the while!

With Luke's 1st birthday in only 2 short weeks, I have been reflecting back to the days before his birth.  I knew a 3rd child would change our lives, but it has ended up being so much more.  I find myself looking at Luke and silently thanking him for coming to our family.  He is this little bright spot that no one can stop smiling at.  It's hard to believe that 11 months ago I was worried to take him out in public.  Worried that I would have to somehow explain who he was.  Today I look forward to taking him places and showing him off.  Showing everyone what a little love he is, and making sure everyone gets a chance to know him.

This is the time of year everyone is making resolutions.  I am finding it hard this year because I have realized we can't predict the future, as much as we would like to.  We have no way of telling what challenges and adventures may be in store for us during 2012.

The best we can do is to strive to grow.  Not just in January, but every day.  As Lucy Maud Montgomery wrote in Anne of Green Gables, "Isn't it nice to know that tomorrow is a new day with no mistakes in it yet?" 

I want to be a more present parent.  I want to spend more time with my husband.  I want to read more books, cook more interesting meals, spend more time with friends, sew more, knit more, exercise more, sing more ...  The list can go on and on.

I also realize that life is uncertain.  The best we can do is to embrace the moment we are in, and live in it fully.  So that is my resolution. 

No guilt and no expectations. 

Tomorrow I will be better than I am today. 

Today I will cook with my kids. 

Today I will go on a walk. 

Today I will call a friend.

And if I don't have time today, there's always tomorrow with no mistakes in it ... yet.  :)

Happy New Year.