Angel "Kisses"

As a rule I have tried  to balance the monumental challenges with the extraordinary blessings that come with raising a child with special needs in this blog. Some weeks naturally weigh more heavily on one side or the other, but in fact to me they are one in the same.

You see without the challenges the blessings would not seem so sweet, and without the blessings the challenges would be too much to bear.

In my posts I have tried to keep it honest and real, but the fact remains that much of it has been somewhat sugar-coated, because quite honestly most people couldn't handle the truth! Not many people want to read about how we spent four hours cleaning up poop from every, and I do mean every surface in Scotty's bedroom and from every square inch of his body. 

Thank God this little pastime of his ended many years ago, but the horror of the memory lingers on...and on...and on.

So when he gets up at 3am we can  acknowledge our exhaustion, but be so thankful that he didn't use poop as an artistic medium to redecorate his room.   So there you go...without the challenge the blessing would not be nearly so easy to recognize.

A few years ago I joined the Facebook. For most people it is a place to keep in touch with friends, share jokes, recipes, political opinions and some general silliness. Personally, Facebook has changed my life. I have been blessed to have found a group of parents, who like us are living a very extraordinary life with an angel.  A life that defies description with mere words or photos...a life much different than the one we had all planned.

These families inspire me with their stories, with their courage, and with the fierce love they have for their children. Our stories though similar are each unique and in sharing our challenges with one another our blessings have now been multiplied. 

Today's blog is not at all the one I had intended to write, but it is the one I needed to write. Yesterday a fellow "angel momma" Kristi Murray, wrote a post about her son Nicholas who is a 12 year old angel. Her sweet boy had given her a few "angel kisses" on her hands for all the world to see.  A visual that couldn't be covered up or sugar-coated.

Angel "kisses", by my definition, can come in the form of bruises, bites, sprains, pinches, pulled hair and some pretty impressive hits and kicks from these children of ours who have extremely low muscle tone.

Her son, like mine, is only able to express himself through his actions. Anger, frustration, sadness and even happiness can result in a very painful "angel kiss".  There is no malice or hatred behind it...it is just their way.

Yes...it hurts.  There is pain involved.  More often than not it hurts my feelings more than actual physical pain.  Okay, that is probably sugar-coating...getting my hair pulled by a 165 pound man really does hurt an awful lot, but the kiss on the top of my head afterwards is so incredibly sweet.

Day by day we soldier on holding one another up and reminding each other to find the blessings in our challenges.

So thank you Kristi for allowing me to share your post and your beautiful, beautiful boy on the blog today.

Thank you for your words yesterday that showed up on my wall just when I needed them.

Let all that you do be done in love. 

1 Corinthians 16:14

From Kristi:

This morning, at the Women's Bible Study I attend with my mom, I happened to look down and saw this pitiful sight.

Check out my hand. THIS is what a special needs mom looks like. This is the outcome of having a child who can't communicate and needs to pinch you to get your attention or let you know he doesn't like what's on TV.

I can slap on a cute bracelet and ring…but the scars are still there.

And that's ok.

Because the topic in our class today was how God is WITH and IN His believers. We have HIS power to get through times and situations that aren't pretty.

I can do this. WE can do this, Angel Mommas. And if you are a Believer, we have the POWER of The One who loved us so much, He died for us and left us the Spirit inside us to endure.

And that makes this woman sigh with relief.

"I have carried you since you were born.
I have taken care of you from your birth.
Even when you are old, I will be the same.
Even when your hair has turned gray,
I will take care of you.
I made you and will take care of you.
I will carry you and save you."
-God
Isaiah 46:3-4

So good to know.

Angelman Syndrome

Please take a moment to go to the White House website

 and sign the petition to increase funding for Angelman Syndrome.  

Angelman Syndrome is a rare neurogenetic syndrome.

Most people have not heard of AS. In fact, many doctors haven't.

The symptoms of AS are extremely severe. Mental retardation, nearly complete lack of speech, and severe difficulty with motor control occur in all individuals. Seizures occur in almost all individuals.

Individuals with AS and their family members are enduring incredible hardship. However, there is hope.

A cure for AS is on the horizon. The cause is now well understood - a rarity amongst genetic syndromes.

All that is required now is the funding to make a cure possible.

In 2010, the National Institutes of Health spent less than $500,000 on Angelman Syndrome research.

We ask, simply, that funding towards Angelman Syndrome research be greatly increased.

It just takes a minute.  You do have to sign up in order to sign the petition.

Click Here

Research for a Cure for Angelman Syndrome