Hard Days

There are days when it is easy to accept the road we are on, easy to just go with the flow, easy because I focus on how beautiful my kids are and how much fun it is to get to know them.

Then there are moments when it pretty much just sucks that my kids have to be different, that things that come so easily for a normally developing kid are so much work here. Moments when it feels like somebody took a knife and plunged it into the deepest part of my heart. Moments when my son looks at me with tears in his eyes and asks me to help him and I can't. In the moment there is nothing I can do. I can't make the (expletive) trike pedal straps work, can't keep his feet on the pedals, can't will his trike to work so he can go riding off with the neighborhood kids, can't make his wheelchair look like a bike so he can fit in. I feel so helpless and frustrated and angry and fiercely protective.

Today, I hate spina bifida. I hate the issues in our world that make spina bifida a part of life for so many people. I hate that my child has this. 

And, yes, I know all the Ms. Mary Sunshine (apologies to those named Mary) phrases and sayings, meant to make the people saying them feel better for having said something but making the person having the big feelings feel stupid for expressing themselves.

The truth of the matter is what it is right now. Having a child with special needs encompasses all aspects of the emotions and frustrations and triumphs and heartaches that come with it. Today at this moment is a crappy day. A little later I will hug and kiss my child and make blueberry pomegranate juice with him, we'll patch up his baby doll with some kisses and fake patches and he'll head out to swing with a huge smile on his face.

It's all part of the journey.

Family Update

I haven't updated in a while and the kids are changing like kids do, so it's about time I get with it!

Damek is wrapping up his first grade year.  His school was in charge of the church service a few weeks ago. Damek played bells, was a character in a puppet skit, and helped with a memorized dramatization of a scripture reading.  The teachers in his school gave a brief blessing for each of the children in the school, talking about what each child's strengths are, what they enjoy doing, and what they want to do in the future.  It was very special.  Damek is a really awesome kid!

Caedmon finally has his custom-built wheelchair.  I haven't been able to snap a picture of him in it yet because he's not so sure about it.  He has taken it for test drives around Costco, Cubs and Target.  I think he'll be ready for summer fun. We also received a bike that attaches to the back of an adults bike, for kids just learning to ride.  Some friends had it sitting in their garage and didn't need it anymore so offered it to us.  Caedmon LOVES it!  He has been on as many bike rides as he can talk us into taking him on.  His face, his squeal of laughter brings so much joy to us.

And one more Caedmon update.  This spring he started running!  I just cannot believe the stuff this kid accomplishes!  We were quite ready to accept that there are things he will never be able to do and running was definitely on that list.  He proves all the time that we cannot write him out of anything!  To see a video of him in action, click this link: http://youtu.be/0I8v5CJDegs

And, Asher.  This little buddy is doing so much lately.  He's been trying out word sounds, so far we've heard, 'Hi there!', 'Hi Mom!', 'Dad', 'Get this', as well as some more, less recognizable words.  Anytime he hears music he starts singing, loudly.  Yep, he definitely fits in this house! 

He's been signing 'more', 'eat' and 'all done', waving for 'hi and 'bye'.  

We've been working hard on getting him to use his leg muscles.  He has a little walker his Early Intervention PT brought and has started scooting backwards in that.  We work on climbing stairs, sitting in a big boy chair with feet on the floor, kneeling to play, anything to get those leg muscles working.  Yesterday, for the first time at home, he stood for a few minutes to play in the lego box that he normally doesn't get to touch.  All about motivation!

Straw cups and little victories

A while back I posted about our struggle with drinking out of straw cups. Sometimes I can be a bit on the melodramatic side because it took us all of 3 intensive days before he got it. He's been a happy sucker ever since. But tonight we had another victory. Instead of picking up the cup and hurling it over the side of his high chair he actually picked it up and put it to his lips . . . and drank! That is a great victory and definitely worthy of cake or something. I happen to have a freshly made pan of brownies so if you would like to stop by and have a celebratory piece we would love to have you, just don't look too closely at the house and it's colorful toy decor.

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.