Thursday, September 25, 2014

When Life Hits Hard. Again.

"What lies behind us and what lies before us are tiny matters compared to what lies within us."
-Ralph Waldo Emerson

It is a hard week. One of many. One of a huge physical setback that has doctors scrambling to do cultures and biopsies and decide on which medications we need to start. A week that has them squeezing us in for multiple appointments which means multiple drives to UNC. A week that has me and Todd stressing. A week that includes many hours at school meetings to make changes to the IEP to include tube feedings during the day. A week where the older two have to play the supportive and patient role yet again as their own needs get scooted towards the back.

This is yucky stuff.
Stuff that makes my heart hurt.
Stuff that makes Todd angry.
Stuff that makes siblings worry and cry.

Stuff that lets us know Owen is in pain. 

And watching your child hurt can get really really old, really really fast.

And then I turn on pandora, and I hear the Oceans song and I know, He's there.

You call me out upon the waters
The great unknown where feet may fail
And there I find You in the mystery
In oceans deep
My faith will stand

And I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine

Your grace abounds in deepest waters
Your sovereign hand
Will be my guide
Where feet may fail and fear surrounds me
You've never failed and You won't start now

So I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine
- Hillsong United

And so we dig deep into the sand and hold strong as the waves crash, trusting that we will come up on the other side. We may be gasping for breath, but He will get us through it.

Because what lies inside Owen? It is a strength that can only come from the One above.

And watching him endure heartache after heartache after heartache and still be the vivacious, strong kid that he is? It teaches me one thing:

Life is hard. And Beautiful.

And life with chronic illness is tough. But this kid is tougher.

All three of them are.

They're a team and they've proved that over and over and over again this week as our family works through many setbacks. The older two now have to help get formula and tubes where they need to be at school each morning so the nurse can do what she needs to do at school. And they do it without complaint.

And for these three beautiful, tough souls, I will forever be grateful for what lies within them.

Tuesday, September 16, 2014

Do you Hear what I Hear?

For years, people have been telling me that Isaac has a slight speech impediment. People like my sister (who is a speech therapist with a master's degree), my dad, Todd, my s-i-l, Todd, my friend, Todd, my sister, Todd, etc.

And for years, I have denied it and told them that I don't hear it. I think he speaks just fine and we're not paying for any more therapies in this house thank you very much!

It has been quite a source of contention between my husband and myself.

At Christmas, my sister mentioned it again, and again, I ignored her and Todd.

At the beach she got a little more insistent and I caught her in the corner working with Isaac on his speech and rewarding him with skittles. They worked on his "sh and ch" sounds.

We got home from the beach and I had my second post-op ear surgery appointment. The one where they would tell me if the surgery was successful? The one where they would tell me if I would need a second surgery or not? The one with the highly extensive hearing test......

I bombed the crizzap out of it.

The surgery did help with some of the issues but I learned that I have severe high frequency hearing loss. Severe.

So I asked the audiologist:
"What kinds of sounds am I missing?"

Her response:
"You're catching most of the vowel sounds and doing some good lip reading and compensation, but you're missing a lot of consonant sounds. Sounds like ch, sh, s, f, etc."

"Well shit."
Yes, I actually said that out loud to her.
Although, I apparently don't hear "sh" sounds well, so I could have said "oh hit." 
I mean we'll never really know now, will we?

Sorry Isaac! 
I literally DID NOT hear it.

We'll get an evaluation soon.

And what did the Duke Otolaryngologist say about all this?

Well first he said I had to be fitted for an "assistive hearing device."

Just Lovely.

 And then I got a nice little lecture on "when you know you have a history of ear trauma and hearing loss, maybe you shouldn't be so stubborn in the future."

Oh just shut up and give me my hearing aid, Doc.

And to my Isaac?
So so so so sorry.
Epic Fail on my part.
I'll pay for your speech therapy and any other therapies you will need one day on account of me. I'm sure they will be numerous......

Friday, September 12, 2014

Get ready to Run!

It is that time of year again.

Time to dust off your running shoes and join us in a fun morning of exercise and raising money for a good cause.

There are some really exciting things happening in the world of autism right now. I watched an interview the other night and researchers are now saying autism begins in the womb with the development of the brain. I don't know all the technical terms. but here it is in my dumbed down verstion: Typically developing kids have connections fully made as the brain develops. Autistic kids have gaps in those connections. (If you want the more intelligent version, click the link below.)

Mind. Blown.

What does this mean?

It means, if they can start diagnosing sooner, babies can start getting therapies and help. Babies. It means, they are starting to look for signs of it at 6 months of age, rather than waiting until well into the toddler years. And early intervention makes all the difference for these kids!

So that being said, I know it is a lot to ask of you to give up your Saturday morning and your finances, but you are making a difference.

And if you can't make it or don't have the money?

Believe me, I understand a financial predicament. But I will ask you to do one other thing: If you're the praying type, pray for families dealing with autism. Pray for patience. Pray for guidance. Pray for understanding. Pray for good doctors. Pray for strength. Pray for their siblings who often get the short end of the stick. Pray for good therapists. Pray for progress. Pray for good moments and good days. And if you know someone going through it, give them a hug and let them know you're praying for them. Send them a funny quote. Take them out for a cup of coffee. Don't judge them when their child is screaming and they're not handling it the way you would. Just be there for them. I am so blessed because I have awesome friends who do this. Awesome friends.

And it makes an even bigger difference than running a 5k.

We love our Owen just the way he is.

And we love supporting a cause that can make his future even brighter.

Let me know if you have any problems with the link below for Owen's Pack.

Thanks friends!!