Let's go fly a kite!

Can we fly a kite today?  It's too windy, we have too many trees, there isn't enough wind, it's time for lunch, maybe later ...

Can I help you cook Mommy?  It's too messy, it's too hot, we're in a hurry, maybe later ...

Can we go on a bike ride?  Luke can't ride in the burley yet, it's too hot, it's time for lunch, it's raining, let's wait until Daddy gets home, maybe later ...

Can I go sledding?  It's summer!

These are a few of the questions I get almost every day (yes, even the sledding one!), and the responses I find myself saying time and again.

The problem is, I want to say yes, but life seems to get in the way.  As a child, all I remember is playing the days away and exploring the world with my sister.  We were oblivious to the adult world of responsibility and obligation. What a different perspective I have now as a parent.  I worry that I will transfer my stresses, fears, and anxieties on my children, when all I want is for them to have a childhood full of carefree days. 

When else will they experience that feeling?  Life just seems to get more complicated with each passing year. 

I am doing my best to say yes more often to my children.  It's true that we have too many trees to fly a kite at our house, and it is also true that Luke's body isn't quite strong enough to ride in the burley, but that just means we have to get creative  :)

Saying yes means more messes to clean up, and more projects to plan, but it also brings more joy to my children and myself.  So it's worth it.  Even as the laundry piles up and the dishes take over the kitchen, it's worth it.  After all, what do we want our children to remember about their childhoods?  They won't remember the messes, the laundry or the dishes.  They are going to remember the joy and laughter that comes from quality time spent with people who love them.   At least that's what I'm banking on!

Project day on the porch

Now, I'm not kidding myself.  I still say no.  Sometimes you just have to, but I'm thinking through the questions before I go on autopilot with my "no" answer.

A couple of weeks ago we had a wonderful family reunion with my Mom's side of the family.  On a last minute whim, I grabbed the kite as we left the house, knowing that if the wind was right and the sun was shining, I might be able to make my 5-year-old daughter a very happy girl ...  What a lucky guess!  After saying no day after day after day, I was FINALLY able to say yes!!  That evening before bed she told me that "This was the best day ever!"  

Very serious about getting that kite to fly!



My nephew Gabriel flying the kite.  Pure joy!

Yup, it was worth it.

Colin is quite the 2-year-old.  Stubborn, cute, ornery, sweet, cuddly, focused and passionate.  He's my boy in the middle, sensitive and rough all in one.  I'm trying to get some extra time with him with the hope that he won't get that left out feeling you always hear about from middle children.  I'm sure I can't eliminate it completely, but I'm trying my best.  That's about all we can do isn't it?  Try, try again.



After crashing the bike into the bushes



Colin has decided that he likes to cook with Mommy. 

Worth it again!

I spend a lot of time with Luke.  I think more than I did with my other children at 5 months (although it's hard to remember!).  Sometimes we are doing his physical therapy.  Other times we are just talking to each other, or he is riding around the house with me in the Moby wrap.  I already know my time with him has been worth it.  He is a strong, interested, active, talkative baby who has the lovely combination of being content and determined at the same time.  I enjoy every moment I spend with him and have loved to watch him grow and learn so much in only 5 months.

Spend the time. 

Say yes whenever you can. 

It will be worth it.

This is one of my favorite excerpts from a book, and one that I think of often.

From: "Little Lamb, Who Made Thee?"

By: Walter Wangerin Jr.

Let the children laugh and be glad.

O my dear, they haven't long before the world assaults them.  Allow them genuine laughter now.  Laugh with them, till tears run down your faces - till a memory of pure delight and precious relationship is established within them, indestructible, personal, and forever.

Soon enough they'll meet faces unreasonably enraged.  Soon enough they'll be accused of things they did not do.  Soon enough they will suffer guilt at the hands of powerful people who can't accept their own guilt and who must dump it, therefore, on the weak.  In  that day the children must be strengthened by self-confidence so they can resist the criticism of fools.  But self-confidence begins in the experience of childhood.

So give your children ... - give them golden days, their own pure days, in which they are so clearly and dearly beloved that they believe in love and in their own particular worth when love shall seem in short supply hereafter.  Give them laughter.

Observe each child with individual attention to learn what triggers the guileless laugh in each.  Is it a story?  A game?  Certain family traditions? Excursions?  Elaborate fantasies?  Simple winks?  What?

Do that thing.

Because the laughter that is so easy in childhood must echo its encouragement a long, long time.  A lifetime.

Father's Day

You are being watched.

You are being trusted.

You are passing down traditions.

You are sharing your life.

You are taking the time.

You are our support.

You are there when we need you.

You are loved.

Happy Father's Day.

one day at a time

Every home has it's advantages and disadvantages.  If you live in town, you have to deal with neighbors who can see right into your living room, but you can walk to the post office.  If you live in the country, you have to drive everywhere, but you can walk outside in your pajamas.  I love living in the country.  The birds, the silence (on occasion), the stars, and of course the space.  I love that I can open my windows and turn the music up.  I love that my kids can be dirty and messy, and I can drag them in the house while still wearing my pajamas at noon  :)    **My apologies to the one family that lives near us and has to put up with these things!

I would; however, love to walk out my front door and over to a friend's house without driving.  I would love to sit on my front porch and watch life pass by, while I drink a lemonade and watch my well-groomed children play quietly on the porch with me ...  yeah I know. 

That would never happen ...

  

We have been loving life in the country this summer.  We have an oriole nest we are watching, 3 swings with more in the plans, and a garden that is still in the process.  We also have weeds up the wazoo and more projects than I can count.  Oh well ... one day at a time  :)

I think a house becomes a home when you discover something unique about where you live.  We didn't know where the toads lived last year.  We didn't know which trees would be the best to spread a picnic blanket under.  We didn't know where the best spot to roll down the hill was.  I'm sure we will uncover many more special things about our home in years to come, but we have made a couple of fun discoveries in the past few weeks.

Our yard has many beautiful oak trees, and lots of stumps as well.  Colin figured out that toads have taken up residence in several of these stumps.  Since the discovery, my older two children have had afternoons of nothing but chasing, feeding (so they tell me), catching and watching toads.

The second discovery has been a fun one to share with people who visit our home.  While Gwen and I were swinging a couple of weeks ago, all of a sudden she said, "Mom, look!  There's a heart on that tree!"  Thinking she was seeing something through the eyes of a 4-year-old, I told her she would have to show me when we were done swinging.  Then I actually looked where she was pointing, and saw this ...

Gwen has a knack for finding hearts.  She brings me rocks shaped like hearts, makes hearts out of leaves and flowers, loves to draw hearts, and makes hearts with her hands all the time.  So, it was fitting that she discovered this tree. 



Gwenyth Kay on her 5th birthday

I love that our children see things that we are oblivious to.  Slowing down.  Noticing.  Taking time to appreciate the beauty that surrounds us. 

My husband asked me when I started this blog why I titled it "one day at a time."  He thought it sounded daunting and negative and wasn't sure it was the right title for our family.  I understood his thoughts, but as I move forward, I feel like it is exactly right.  Sometimes we love our life, one day at a time.  Other times we deal with our life, one day at a time.  The message it sends to me is to appreciate each day and live in the moment, no matter if it is a "loving" moment or a "dealing" moment. 

We may not always be perfectly content where we are, but we can move forward with the knowledge that life isn't defined by our level of contentment.  It's defined more by how we react in times of difficulty and stress.  I do not define myself as a parent of a baby with Down syndrome.  I define myself as a parent of three amazing children who each bring joy and challenges to my life.

Worrying today does not empty tomorrow of its troubles; it empties today of it's strength." -JRR Tolkien

This is Luke ...

Soon after the doctor told us that Luke had Down syndrome, I realized we had to tell our friends and family.  I honestly can't remember who we called first or what most people said.  The only response I remember is my Dad's.   He let out a sigh of relief and said "I thought you were going to tell me something serious."  He had worked for years as an elementary guidance counselor and knew that Down syndrome was not the tragedy I was imaging in those first few hours.  Thank goodness for parents who keep us grounded!

When we started taking Luke out and telling people he had Down syndrome, we became aware that many people couldn't "see" the features on him.  Because of that, I found it challenging to tell people the diagnosis in the first month or so.  I didn't want to say "This is Luke.  He has Down syndrome."  Neither did I want to avoid the topic, since many of the people he was meeting were friends, who would eventually find out. 

I experimented with different ways of telling people.  Eventually I settled on introducing Luke and first telling what a wonderful baby he was (easy to do, since it was so true!)  Then I would say, "We did find out that he has Down syndrome, but he is healthy and doing really well.  He is so much like our other children."  That seemed to satisfy most everyone.  It didn't beg for the "I'm sorry," that I got before I figured out how to tell the news with an upbeat voice.  It also didn't conjure up the blank stares, that I got when I told the news without elaborating on how we were feeling about the diagnosis.  I found that people took their cues from me.  If I was sad, so were they.  If I showed acceptance and love, they followed suit.

We know Luke has Down syndrome because of a blood test.  We know he has 3 copies of the 21st chromosome because we have seen Luke's karyotype.  Beyond that, Luke also has many of the common physical features associated with Down syndrome. There is a stereotype that all people with DS look alike, when in reality Luke will look more like Gwen and Colin than he will look like other people with DS.

One of the things Matt noticed right after Luke's birth was his low muscle tone.  This is called hypotonia and makes his body more flexible ... or cuddly.  It just depends on your perspective.  None of our children have cuddled quite like Little Luke!

Luke's eyes have the classic almond shape, and the bridge of his nose is slightly flatter than our other children's. When Luke is happy he smiles with his entire body!  And those eyes ... I don't want to say his smiles are more precious than our other children's, but his eyes do seem to sparkle in a different way.  Just thinking about it makes me smile!

Some of the other features are very subtle:  A space between his big toe and the other four, pinky fingers that are curved slightly inward, small and rounded ears, a bit of extra skin at the nape of his neck, and brushfield spots in his eyes. 

It feels funny to list all these things, because they don't tell you anything about Luke.  It's just a list.  A list of things that the extra chromosome 21 does to the body.

Let me tell you a little about Luke at 4 months.  He is still rolling from his tummy to his back, something he started doing at 2 weeks and has never forgotten.  He likes to suck his thumb, which makes all of his sleeves wet since his clothes are all too long in the arms for him.  He loves to play under his play gym (especially after Gwen added hanging finger cymbals), swing in his swing and play with toys on the floor.  He also LOVES playing with Gwen and Colin, reading books and believe it or not - singing with us!  He still blows raspberries and is a great "talker."  He even started scooting forward and pivoting last week!


We find ourselves celebrating with Luke every day.  All the little things - putting his hands together, holding his head up, grabbing his feet ...  they are all mini milestones that we didn't even notice with our other children.  The delays will come, it's just part of his syndrome, but it just gives us more time to appreciate and celebrate the smaller steps along the way.



We call this group "Luke's Gang"  Ages: 5,4,3,2 and Luke (along with my sister Karin)



The Swing

 I'm not sure if it's for the kids or for me ... but the swing is up!  These pictures make it look like we put it up for the kids, but I'm pretty sure I  have clocked as much time (or more) than Colin or Gwen.

Together.

Two on a swing, and one on a blanket.  It won't be long before we will be figuring out how to get all three of them on the swing together!

 

Secrets between a brother and sister ...  I'll never know what they were talking about, but it's these moments that bond them as brother and sister.  When I watch the two of them together I know that Luke is going to be taken care of.  They are going to be his team.  I just know it.  

"Team Luke."

Oh, to be a child again and experience this...

Swing, swing swing swing.

I sit on my throne, and I feel like a King.

Swing, swing, swing, swing.

Goodbye to the earth, I'm a bird on the wing!

More than me

As a mother, I tend to every need of my children.  I wake in the night to feed a baby, I read books to my children as if my life depends on it, I kiss multiple skinned knees, and accept every bouquet of dandelions as if they were the most beautiful flowers I have ever seen. 

And yet ... it's not enough.

Despite my best efforts, I have come to realize that my children need more than just me. 

I can't do it all. 

They need their Daddy to wrestle with them, cuddle with them, build them a swing and sing them songs from the radio.  They need their grandparents to parent them with the experience of a lifetime.  They need their aunts and uncles to show them new perspectives in the world.  They need a community that cares for their growth and development and offers experiences I can't.  They need time away from adults to learn how to work together and how to let their imaginations soar.


Daddy getting the ropes ready for a swing.


Whenever I hear my sister sing Luke a song, listen to Gwen tell me what she learned at Kinderhaus, or hear my Dad read Colin a book, I feel a weight lift off my chest.  Other people are helping my children to grow and learn. 

I don't have to do it all.

After Luke's birth I felt alone in the first few days, and even weeks.  I wondered how I was going to find time to raise Luke.  I was afraid his needs would keep me from spending time with my other children.  I figured I would be solely responsible for teaching him everything he would need to know.  Then, if something was missed, it would be my fault.  I underestimated the people who surround Luke and our family.  I'm not the only one who loves Luke, and he needs those other people in his life.

Luke is growing (14 lbs 13 oz at 4 months!), which Luke and I have achieved together.  He is also getting stronger and learning new things.  Yes, I work with him every day, but so do many other people.  Even Gwen has learned how to help Luke when he's on his tummy and knows what physical therapy skills we are working on.  Does she know that every baby doesn't have to work so hard?  I'm not sure.  What she does know is that Luke is our "special buddy angel." 

Her words, not mine.



Luke Michael, 4 months old


I don't know how to thank all the people who have taken the time to read, sing, do a puzzle, bake some cookies, draw a picture, or just have a conversation with one of my children. 

I can only say thank you.  Thank you.  Thank you.

Motherhood

Motherhood.

How much I wanted it. 

How little I knew.

How much I have learned.

How wonderful it has been.

How I look forward to the future!

I am blessed to have an amazing mother who took time away from her career to be home with my sister and me when we were young.  She is the reason I knew I wanted to spend my days at home, nurturing and teaching my own children. 

So much has changed since my first Mother's Day in 2007.  My journey of motherhood has had it's ups and downs, but today, as I look back at these pictures (all taken on Mother's Day), I see how much that journey has shaped my life.  Today we thank our mothers, but I also want to thank my children.  How wonderful to experience childhood twice in one lifetime!

2007 - Gwenyth is 11 months old and I was finishing my final year of teaching before staying home with her.

2008 - Gwen is now almost 2 and I am pregnant with baby #2, who was due on January 16, 2009.  We would lose this baby 3 weeks later. (Anyone notice the due date ended up being Luke's birthday?!)  I didn't even realize it myself until I looked at this picture.

2009 - Gwen is now almost 3 and Colin is 6 weeks old.

2010 - Gwen is almost 4 and Colin just turned 1.  Matt was on call that morning, but I was determined to take the kids to church on my own.  (What was I thinking?!) 

I can't remember if we made it through the service ... 

2011 - Today I am the mother of 3 beautiful children. 

Of all the adventures in my life, motherhood trumps them all.

I also want to open the discussion of Down syndrome up to all of you.  The two most common questions I have been hearing from readers that I will be addressing in upcoming posts are:

#1 - Luke doesn't look like he has Down syndrome.  Are you sure he has it?

#2 - What are the "superman" pants for?

If there are other questions you have - please email me or post a comment.

Happy Mother's Day!!