April Showers

If April rain showers bring May flowers, what do April snow showers bring?

I believe we have become numb to snow falling from the sky well past the start date of spring.  We may faint if we ever hit 60 degrees.

We are enjoying being able to make snowmen and snowballs and snow forts.  All winter long Caedmon was disappointed time and again by snow that was too dry or too cold to smush together in a ball.  No more!  Spring heavy, wet snow has answered his prayers.

This is the snowman Chewy.  We built him a week ago, during our last snow storm. He didn't want arms because he had a tummy-thing, as Caedmon explained to me.  

Let me tell you, Chewy is a heavy guy!  It took all the strength I had to get his body ball on top of his bottom ball, while Caedmon giggled at my facial expressions.

Here's the view from our back deck last night.  We had gotten about 5 inches in 5 hours.  3 more fell through the night and we woke up to a call from the school to let us know it was a snow day. 

A native Minnesotan once explained to me, 'We don't ever say things are good.  We say they are not too bad.' So, this spring is not too bad, could be better.

Timely Conversations

The last few days I have been thinking of and praying for the city of Boston and all the victims and their families and the perpetrators, that they would be struck by fear and awe of God and that they would be caught and held accountable.

It is difficult for me not to obsess over tragedies.  When I read too many details the emotions can swirl in my brain for days, rendering me a little less present for my family.  So, I have had to put a personal ban on clicking on all the headlines that come across my screen.  I look to see if the criminals have been caught, then I pray and let it go.

Tonight at supper Caedmon asked why we do communion at church.  'Why do we say we're eating Jesus' body and drinking His blood?'  he asked quizzically.

So I tried to explain that it was meant to be a reminder to us.  A reminder that Jesus came to earth, that He took all our bad stuff on Him, that He died, that He rose again and that we have this great and awesome hope that we will see Him again and go to heaven.  I said, 'It's easy for us to forget things sometimes.  We can feel sad or bad about bad things going on.  He knew we would need a reminder that good is going to happen forever even if bad is happening for a minute here.'

That was a very good message for myself.  I could hear God's voice speaking that same thing to my heart as the words came out of my mouth.

A minute later Caedmon said, 'I can't wait to go to heaven!  When Jesus comes to get us in His big cloud, I'm going to (his voice dropped to a whisper) touch Him (as he reached out and gently took my hand)!  And we should bring Him a lunch!'

The thought of my sweet boy standing next to Jesus, holding His hand, handing him a lunch because He must be so tired coming all the way from heaven almost made me burst into tears.  My next thought was of the woman in the Bible who fought through crowds to touch the hem of Jesus' cloak, and was healed the instant she touched him.  That was pretty emotional too.

So, tonight I will pray for Boston and I will pray that Jesus comes soon and I will thank Him for placing my children in my life to remind me of the hope we have and His light through them shining in my darkness.

Happy World Down Syndrome Day!

This is a special day.  A day to share with the rest of the world that a diagnosis of Down syndrome does not have to be scary.  It doesn't mean that your family is going to be taken away from, as in no longer 'normal' or no longer hopeful or no longer having high expectations, rather that your family will gain from, as in joy, light, excitement, love, compassion, empathy, a fuller life.

The statistics are staggering.  Only around 10% of those babies identified in utero as having Down syndrome live to see their birthday.  Most of the 90% are aborted.

As a mother of a precious, amazing baby boy who also happens to have Down syndrome, I feel it is my job and duty to spread the word that these babies, these children, these people have so much to give.  Their lives are worthwhile.  Our world is a richer place because these children are in it.

 The theme for this year's World Down Syndrome Day is 'Who I Am'.  Take a moment to get to know someone in your community, your church, your family who has Down syndrome.  It's amazing how things are much less frightening when you are able to put a face and a name to them.

This is Asher.  He has Down syndrome.

And he's ready to party on this World Down Syndrome Day.  Anyone want to dance?

Of Water And Poop

Tonight we began Phase 2 of Caedmon's bowel management program.  It was another lesson, in a long line, on how the key to parenting is not that my children look/act/behave like other children but that they are as independent and self-sufficient as they can possibly be.

That must be the weight I carry with my amazingly special kids.  I'm wanting to let go of it.  Letting go of the need for them to, for whatever reason, end up not needing to be too different, not too special.  If he could just poop on the toilet like most other people then it would make everything else seem better.

It helps to have a pediatrician who speaks candidly, 'Look, this is the way it's going to be.  He'll need another surgery when he's 10 or so but it will totally change his life to be able to do this on his own.'

Yeah, but he was supposed to not need these things.  He was supposed to be the one that was that medical miracle.  The one that you read about in all those forwarded e-mails or Facebook stories.  We prayed and his body just miraculously changed and now he doesn't need any surgery ever again!

Except, that's not really how those stories turn out.  I mean, you see a snapshot of someone when something wonderful happened but the truth is that even those people grow old, their bodies start shutting down, things quit working how they were supposed to.

Because everybody gets old, eventually.

And everybody needs more help, eventually.

And everybody has to learn how to navigate through life with as much grace and charisma and chutzpah as they can muster with the abilities and limitations they have at that particular moment in their life.

And some people can do it, really well, and some people fall flat on their faces.

And the amount of physical or mental ability or disability has nothing to do with whether they will be graceful or klutzes, what matters is do they have the tools, have they learned what they need to learn to do what they can to the best of their ability. 

So, my son can poop because we put a balloon into him, shoot some water up into his colon and wait for it all to come down.  He's never going to experience a potty training party.  But we sure as hell celebrated every time we heard a kerplop! tonight in the toilet.  He doesn't know what it's like to push until something comes out.  But he enjoyed me leaning down with him and putting my arm around him to make sure he was leaning enough, putting enough pressure on his tummy to get things moving.  He said I was looking out for him.  The rest of the time on the toilet, whenever he needed to 'push' he'd ask if I could 'look out for me again'.  We would lean down together, our heads touching, my arm around his back, his giggle-breath on my cheek, and we'd wait for the sound of water or poop.  Then we'd sit up, give each other a high five, regardless of what came out and wait for the next time to try.

Oh Honey Bear

Let's say you spend a shocking amount of money on a special straw cup that is supposed to help your child develop straw sucking abilities that are supposed to help him succeed in many other areas of life even though the cup is basically a recycled honey container with a straw stuck in it.

And every time you try to use it your child does this:

And you can't push it because you don't want it to become this horrible experience that will forever make straws an evil monster that makes your child scream for Jesus to come whenever he sees one.  So, you do what parents always do to get their kids to do stuff they don't want to do, make a game.

I'll let you know if he ever actually sips out of the straw, in fact I will have a party and you all will be invited.  But until then, I count it as a very wonderful success that he put the straw in his mouth.  Did you see that?  Straw in mouth? No tears? THAT is a great success.

Asher's Baby Dedication

Last week we celebrated Asher's first birthday and Grandma visiting by having a special service to bless Asher and dedicate ourselves to depending on God to give us the wisdom and love and grace we need to raise Asher in the best way possible.  

We chose a special Bible verse, Genesis 12:2- I will make your name great and you will be a blessing.  We chose a special song, Committed singing Unstoppable (listen here www.myspace.com/committed6music/music/songs/unstoppable-83687550).  

Our friend, Jeff, gave a little talk about Asher, Down syndrome, love, grace, and blessing.  Grandma gave the children's story, all about how we are God's jewels, and said a special prayer of blessing over Asher.  I sang a song that was really meaningful to me in this journey thus far.  Damek read the scripture.  And Adam preached that God loves us so much He sings over us,

The Lord your God is with you,

    the Mighty Warrior who saves.

He will take great delight in you;

    in his love he will no longer rebuke you,

    but will rejoice over you with singing.  Zephaniah 3:17

Afterwards, we had lunch with friends and family who were able to make it.  It was such a special day!  

As people were leaving, and hugging, and offering encouragement, it was amazing to me how many people told me that they pray for us everyday.  Our little family.  That is a very humbling thing to learn.  And praise God, we need the prayers so much!

Listening to Grandma tell the children's story.

My mom will not love this picture but I had to get one of her telling the story. Hee hee!

Damek wanted to do the scripture reading.  First time up front by himself and he rocked it!

Grandma giving a special prayer of blessing over Asher and the family.

Jeff giving a special prayer for the family.

Me, trying not to choke up singing a song for Asher.

One Year

Today Asher turns a year old.

All morning long I've been surprised at how emotional I am about the events from a year ago, surprised at how I'll remember certain things when I look at what time it is and remember what was happening last year at this time and surprised at how much can change in such a short space in a life.

There were moments, a year ago, when I didn't know how/if I could love Asher like a mom should love her child.  There were a lot of dark thoughts in my head and a pretty heavy weight on my heart.  I felt so horrible that I had somehow done something to our family that would negatively effect my other children because my body had put together a baby that was going to need more than other babies.

A year ago, I didn't know what Asher was going to be like, what personality traits he'd have, how social or aware he would be.  He slept for the first two weeks of his life almost nonstop.  He barely seemed human to me.  I had no eye contact with him, no acknowledgement of connection or life.  He was this tiny, slumbering statue.

A year ago, I sat by myself in a hospital room and cried while my husband followed an ambulance to a children's hospital 30 minutes away and my other two children were cared for by almost complete strangers.

A year ago, I hooked myself up to a machine to try to start getting milk flowing so that whenever my baby woke up there would be food waiting for him.  Little did I imagine I would be doing that for a complete year.  8 times a day, for an entire year.

A year ago, it was the most amazing, beautiful, incredible, terrifying, exhausting, dark day.

I gave birth to my baby in my home surrounded by my family and some amazing women.  Then the bottom dropped out and I went for a freefall.

I'm grateful to be able to acknowledge these emotions and be able to just say it so that I can enjoy today.

Today, my baby turns a year old.

Through the last year all my fears, all my concerns, all my doubts have been completely blown away by the breath of grace and love.

Today, Asher laughs, he yells, he sings, he crawls, he smiles all the time, he eats . . . a lot, he plays, he loves, oh how he loves!

And oh how his brothers love him.  I have seen them grow in astounding ways, become more compassionate, more empathetic, more aware.  And oh how his mommy and daddy love him.  This once sleeping babe has awoken so much light in our home, not just opening our hearts to him but to the whole family and to every person we meet.  It is an amazing gift!

Happy birthday, my darling wonderful son.  Every year I will celebrate the gift I got on your birthday, YOU.

Birthday boy!