The Christmas Program

I have always loved church Christmas programs.  I love seeing the kids up front, taking the lead.  I love to see what comes out, unscripted.  I love to have music take the forefront and, for some reason, many churches only feel comfortable doing that when kids are in the program.  My kids do much better through the service and are much more interested in what's going on. And, don't tell the pastor, I'm not a big fan of sermons so a break from the norm is very welcome.  

But having MY kid in the program just makes it a million times more exciting.  I've been looking forward to today for several weeks, and not just because  it means Adam gets to sit with me. Here are some pictures and a few snippets of my wonderful oldest singing his heart out.  I love that guy!

My singing boy

So excited to see Daddy AND Asher up front to pray.

Asher helping Daddy close the service with prayer.

Caedmon excited that the service is done so he can go run with 'The Kids'

Asher all decked out in his Christmasy gear.

Caedmon is 4!

Arrrrr!  We have a 4 year old in the house, mateys.   

Moments I Cherish

I've been running behind since 2 o'clock this morning when Asher decided sleep was ridiculous and shouldn't we all be up playing and giggling anyway.  We had an early appointment with Early Intervention that left me even further behind so by the time we got to bedtime I was scrambling to get things together to get the baby in bed at a decent time since he was loudly proclaiming that the time was about to pass us by.

As I was getting milk together, I noticed that things had gotten pretty quiet in the baby's room.  I strained my ears to hear what was going on and I heard Damek's voice.  He was reading a story, to Asher.  He had grabbed some books out of Asher's bookcase, climbed into Asher's crib, snuggled up with him and started reading.  For the next 10 minutes, Damek stayed with Asher, reading story after story, talking to him, snuggling him, until I could get in there and finish up the bedtime routine.

These are the moments I love as a mom.

Learning Contentment

For those of you who have never been a parent of a child with special needs it's important that you realize the emotions one goes through are very similar to the grief process.  There is never a time when you can say, 'I am completely okay with my child having these defects/disorders/struggles.' You may come to a place of acceptance for a time and then, out of nowhere, like a mac truck, the pain and sorrow will just hit.  And the tears come or the muscle tension or a feeling of being overwhelmed and you wonder what in the world just happened.

Yesterday I was out for a run.  It was a beautiful fall afternoon.  Just lovely.  I am happy, lost in my thoughts, listening to the rhythm of my footfalls when, from around a bend in the path, a little boy about Caedmon's age comes racing as fast as his legs could carry him.  He's zig-zagging all over the place as his mom tries to reign him in and get him out of my way.

I smiled, I couldn't help it.  He was cute, and he reminded me of my kids. 

But then I was surprised by a deep pain in my chest.  Something I hadn't felt in a long time.  I started to cry, thinking about how that should be Caedmon, running as fast as he could make his legs move, jumping with both feet into the middle of puddles, chasing his brother and actually being able to catch him, not falling over when a breath of wind pushes him just the wrong way.

It's just not fair!

Why our son?  Why Caedmon?  

Why Asher?

A song started to play in my head:

   This is not how it could be

   This is not how it should be

   This is how it is

   And our God is in control

   This is not where we planned to be

   When we started this journey

   But this is where we are

   And our God is in control  (Steven Curtis Chapman, Our God Is In Control)

I learned fairly early on in this journey that the more I held on to my little child-self crying, 'It's not fair!  Why?!', the more miserable I felt. 

But the moment I could accept that this IS.  This is my reality.  This is truth.  That was the moment I could start to feel joy.

Of course, it sucks sometimes.  It just does.  And there are times when I don't want to accept it.  But this is when I realize that I need power outside of myself so I can get back to that place of peace, of contentment.

It reminds me of Philippians 4:12-13:

I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry,whether living in plenty or in want. I can do all this through him who gives me strength.

And because of this, I can look at my beautiful son and see an amazing, thoughtful, helpful, considerate, loving boy and not the defects or difficulties.

And I can walk through this journey with him, learning with him as we walk through all kinds of new things together, and I can get caught up in the magic of even the most mundane of things.  Because my focus in on now.

This is how it is.

Caedmon's gait analysis

Truth, it'll getcha every time

Now that Asher's schedule is more predictable it's become easier to incorporate regular family life into his day to day routine.  One thing we love to do is to have a little family worship time every evening.  It can be a short Bible story, some kind of object lesson using play items around the house, time around the fire in the backyard, a song, in other words we try to mix it up a bit.  We always end the time with a short prayer, praying for anyone we know of who needs a little extra at the time.

The last few nights, when I've asked if anyone would like to pray, Damek has gotten really excited, 'Me, me, me, me!'

And then he prays a beautiful prayer . . . for Asher.

Last nights prayer went something like this: Dear God, please bless Asher.  Help him to grow really strong and full of love.  Amen.

A little later as I was rocking Asher to sleep, I kept thinking about that prayer and repeating it, agreeing with it, asking God to really touch our little Asher.  It suddenly struck me really hard that I have not prayed over Asher the way I have prayed over Caedmon and Damek.  I have prayed for him, I do every night when I rock him, and I have definitely prayed through every hospital stay, but not in the same way.

Why is that, I asked myself.

Could it be that in my mind Asher's future is so murky because of his disability that I don't know what or how to pray for him?  Could it be that I am not expecting much because I don't want to be disappointed with what that future is?

Gah!  How could I, his mother, the mother of TWO children with disabilities, have bias or prejudice while praying?!  Of course, prayer has an amazing way of showing us what is really in our hearts, drawing it out into the light.

Isn't that how self discovery works though?  Being open enough to realize the dark places in you so you can allow light to shine on them, then they are not so dark anymore and they can be worked on?

I'm very grateful for my children.  For the unbiased love they have for one another, for their openness to God, and for the way they show me myself, ugly and good.

And, God BLESS Asher, every aspect of his life.  May he grow to be the man that You created him to be.  Help me to be the best possible mother for him so that he can be more than I ever hoped or imagined.  Amen.

Busy Summer!

How does time go so quickly?!

This summer has been a great one!  Asher is sleeping longer and more consistently, Damek has started reading like a pro, Caedmon is doing more and more things for himself.  Part of the joy of parenting is watching your children grow and develop. The privilege of getting to know them is quite an honor.

Over the last two weeks we've celebrated Damek's 7th birthday

and cheered him on through the first week of 1st grade.

Damek decided that he wanted to spend some of his birthday money to buy a Bible (a REAL Bible, Mom, not a kid's Bible!)  He insisted it had to have a bookmark and be only so big.  In other words, he wanted one just like Daddy's.  So, we took a trip to the local Christian bookstore.  There is a dizzying array of Bibles out there!  It took quite a while but he finally found just the one he was looking for.  It was even red (his favorite color).  

Since he bought it two weeks ago, he has read through the first four chapters of Genesis and the first chapter of John.  He follows us through the house, asking whoever is around if they would like to hear the Bible.  How do you say no to that?  It is awesome how excited he is to read it.  I truly love this boy God has blessed us to be parents of.

Determination

Caedmon has the kind of personality that says 'I WILL do this thing, I will find a way to do it, and nothing is going to stop me'.

As parents this can be a bit frustrating at times.  Like the times when he decides throwing loose, dry beans into the bottom of the oven is cooking or when he throws playing cards/puzzle pieces/legos all over the room or he draws with a marker all over his carpet.

But, while it is difficult there are beautiful things that go along with it too.  Things that would be lost if we failed to see what a gift God has given him in this drive to accomplish and tried to punish it out of him. He has helped us to see that children have wonderful characteristics that, as parents, we are to help and hone, not squelch and hamper in the name of discipline.

The beautiful in Caedmon is watching him do things he wasn't 'supposed' to be able to do: walking without aid, climbing, jumping, mowing

Today at the park, he wanted to play in the little playhouse.  It's his favorite thing right now.  He pretends to cook or clean or work on his computer.  Today, though, there were three older boys who did not think he should get to join them.  One of them said, 'He wears a diaper, let's not play with him!'  Another boy stood at the entry and put both arms up to block any chance of him getting in.  

Caedmon would not be deterred.

He invited them to help him cook supper.  He asked them if they wanted to play.

One of the boys started punching the air in front of him.

He doesn't have an older brother for nothing.  He didn't even bat an eye.

'Why you doin' that?' he asked.

'You can't come in!' the older boy said.

'I don't wanna come in.  Why you do that?' he asked again.

He kept talking until the boys started to tire in their rejection.

Just for a moment, the boy at the door was distracted by something across the playground and before you could bat an eye Caedmon had ducked under the boy's arm and sat himself on the bench inside.

'So, what you wanna make for supper?' he asked.

I love this boy!

Facing down prejudice and meanness already.  I have not yet met someone who can resist his smile and love of life for long.  He is joy and love personified.

He is also the poster child for persistence.