Monday, November 24, 2014

Choosing Thankfulness: Angelman Syndrome

Yesterday in church, I was reminded of the importance of choosing to be thankful.  Even for challenges in our lives that may seem impossible.

And I was convicted of the bitterness I've had towards Angelman Syndrome--the condition that Owen has. Lately, it seems to really be hard. I want to sleep--Owen wants to snuggle.  I want to read a book with the kids, Owen wants to rip the pages and eat them.  Oh yes, there are challenges to raising a child with Angelman Syndrome.

But, I realized that even with this, I could choose to be thankful.  In fact, I must choose to be thankful.  Otherwise it's just too overwhelming. My attitude becomes too bitter, and that rubs off on everyone in the house.  I have to focus on the positive and not always on the negative.

So in order to help me wrap my head around this discovery a little better, I decided to look for the good, and find reasons to be thankful--even in this challenge.

Here's what I came up with...

1.  Angelman Syndrome (AS) didn't take God by surprise. 

Yes, Owen's condition can be explained by the medical world as a random deletion on the maternal 15th chromosome.

But I know better.

 It wasn't random.  Owen--like all of our other children--was a gift from God to us.  He knew what He was doing.  And I can take comfort in the fact that Owen is meant to have it.  It wasn't a mistake--God doesn't make those.

2.  Owen (including his AS) is a blessing. 

The Bible clearly states that children are a gift from God (Psalm 127).

It doesn't say that all healthy children are a gift.  It doesn't say that all children except those who eat paper are a gift.  Nope...there are no exclusions.

That means that ALL children are a blessing.  Whether or not I see them all that way is my choice. The world struggles greatly with this in our current society.  But Bryan and I have decided to go a different route and embrace children as a blessing.

Thus, since I believe that children are a blessing, that HAS to include Owen too.  Owen is a blessing.  Say it with me now...Owen IS a blessing!

Yes he is.

3.  Owen has taught me about God's kind of love. 

Owen can't do many things for himself.  He is dependent on his family to get him dressed, escort him to the bathroom and help there, give him a bath, get his food, etc.  

By caring for Owen, I can't do it because I expect something in return.  I do it because I love him, and he was a gift for our family. 

Giving to others who can't give back is a true example of the love God has for us.  We can't give anything to God that He doesn't already have.  And yet, in a sinful condition, God choose to love.  He choose to love me.  

4.  Angelman Syndrome has taught me about humility. 

Just when I think I have this mothering thing down, I realize that what I thought was hot chocolate that dripped into Owen's ear when he was drinking is actually blood and that his eardrum has ruptured (once again).  And that he's probably been in pain from it for a few days and that's what been causing his seizures.  

Or we get a call from the physical therapist asking why Owen isn't weight bearing on one side.  And we take him in for an x-ray and realize his leg is broken.  And we have no idea when or where it happened. 

Or we wind up in the hospital for a week.  Three times.  In a year.  

Oh yes--there are many stories like that.  Incidents that make me realize I can't do this alone.  I need God's help and strength.  I need the help of family and friends. 

And I have to accept help (which for some reason is really hard for me).  I don't like to admit that I can't do it all. know what?  I can't!  

I need to let go of my pride and accept help.  I need the reminders that I can't do it all.  I need to continue learning about humility. 

5.  Our whole family is learning to care less about stuff. 

In our house, if you leave something down in the living room or dining room, you take the chance that Owen will have either eaten or destroyed it by the time you come back to it.  I've had countless books ripped and ruined, many of them during their first week in the home.  DVD inserts, instructions for Legos, boxes, dolls..nothing is really safe.  

But, stuff is not why we are here.  We are here for relationships and to show God's love to others. It's easy to get caught up in getting mad at Owen.  And accusing him of destroying everything.  Been there.  And once I start, the kids follow suit right behind me.  It's amazing how your kids can help you to clearly see your own downfalls!  

The attitude we've had isn't right.  And so we are all working on putting people above things.  And taking responsibility for our own actions.  And learning to put things away.  These are all great lessons that might not have happened were it not for Owen.  

6.  Owen is beating many medical predictions. 

When we first received the diagnosis, the outlook was pretty grim.  It wasn't certain if Owen would ever walk.  (But he does!) 

No one knew if Owen would be capable of learning. (But he is!) 

He learned to move his body to get around before he could walk.  He has some methods of communication that let us know when he is thirsty and hungry and cold.  

The Lord has allowed Owen to do these things, and He knows what Owen will be able to do in the future.  Even if I can't see past the Pica and the current struggles, nothing is a surprise to the Lord.  He knows the beginning from the end, and I can trust Him.  

Which ties into my final point....

7.  Owen is teaching me to trust God.

I know that God will work all things out for good.  I may not be able to see the good in the midst of the struggle, but I can trust that God will do what His word says.  I know that everything happens for a reason, and that I am growing because of it.  I'm being refined.  And I need it! 

So this week of Thanksgiving, I'm making it a priority to change my attitude about Angelman Syndrome.  I am going to be thankful for it.  Thankful for Owen.  And thankful for the refining challenges that God brings into our lives.  

What challenge can you be thankful for? 


  1. He's such a handsome guy. Thanks for posting this!

  2. You're welcome. Thanks for reading!


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