The Chronic Marathon

I don't know yet if I'll have the guts to publish this one because it highlights my selfishness.

(Which I already know about myself but would like to hide from others for as long as humanly possible.)

But here goes - 

A few years ago, when Owen was around 2, I was sitting in my doctor's office, crying. This is a  doctor whom I adore and would trust with my life. I went for a physical and ended up staying for a counseling session and leaving with sleeping pills and anti-depressants.  I will NEVER forget her words to me that day, because at the time, I thought she was CRAZY! 

Our conversation went a little something like this:

Me: I don't know what's wrong with me?

Dr. Awesome: You're tired. And depressed. And your son has recently been diagnosed with a very nasty chronic illness.

Me: Yes, but I need to get over it. It's not like he has cancer or something horrible like that.

Dr. Awesome: Silence. A long sigh.

Dr. Awesome: I have to tell you something you may not want to hear. In this case, cancer might be easier.

Me: No way! You're wrong. I would much rather have this than cancer.

Dr. Awesome: Cancer has a beginning and an end. Don't get me wrong, it is hell, but it is only hell for a certain time period. There is resolution with cancer. There is either remission or death. And with modern medications, etc, there are more and more cases of remission.

Me: Silence. Long sigh. I still think I would rather have this than cancer.

Dr. Awesome: That's because it's still new. You're still in sprint mode. You're still figuring out biopsies and allergies and how to best help him. This is going to turn into a marathon. This is life long and he doesn't have a textbook case. He has a severe case. It's going to be hard. You're going to need to start meds and get more sleep. You're going to need to protect your marriage.

Me: How do you know so much?

Dr. Awesome: I have another patient with this disease. She's 21 now.

Me: Hope soaring - Really?! How's she doing?!
(In all my ignorance, I was picturing her telling me that this patient is thriving and living a totally normal life now.)

Dr. Awesome: Silence. She's struggling and underweight.

Me: Oh. Okay.

Dr. Awesome: It's a nasty disease. You HAVE to take care of yourself so you can take care of him.

And now for the part where I'm 100% completely and totally a selfish douchebag:

I think I get what she meant now.

Sometimes, and I can't believe I'm admitting this, I get sad when I hear the struggles other families go through. But then they get through it and then it's over for them and we're still here. And sometimes that makes me jealous. I know that makes me HORRIBLE, but unfortunately, it's true.  I get jealous because we're still struggling. Still fighting every meal. Still dealing with a G-tube. Still paying for formula. Still taking strong medications with yucky side effects. Still fighting HARD to protect our marriage. Still feeling guilty about the attention it takes away from the other two kids. And that's not even throwing the autism on top of it all. The cherry on the top.

And honestly? When we went to UNC last month and learned about more weight loss even WITH the g-tube, I hit a wall that I can't seem to climb over. Nope. That can't be right. We put a freaking hole in our kid's stomach so he could THRIVE....not lose even more weight. I wanted to leave that appointment feeling confident that we had done the right thing, not hearing about absorption issues and even more possible problems.

So basically what I'm saying in all this is the following:
I'm glad my kid does not have cancer.
So glad.

But I'm tired of what he does have.
So tired.

I'm tired of people not understanding it.
I'm tired of people thinking he looks normal so there can't be anything wrong, right?
I'm tired of reading every single label on every single food item and thinking something is safe only to see him in pain later and learn it wasn't. I'm tired of packing food and formula and tube supplies everywhere we go.  I'm tired of feeling isolated and alone in all this. I'm tired of feeling tired. I want to climb this damn wall to the other side where there are rainbows and sunshine and unicorns, and dear Lord, please some weight gain! (On him, not me. I'm doing just fine in that area.....)

I went out with a dear friend the other night and we had a hard talk. And some tears. And she said she never knows how to help me?

And that makes me tired of my pride. Of wanting the world to think that we've so got this. That we don't need help.  And honestly, some of that is an unhealthy christian thing. A "we believe so therefore God is going to get us through this......." type of thing. And God will get us through it, but He may need to use other people to help us along the way.

So I made a phone call yesterday morning that wasn't easy. A phone call to a counseling friend to send me a list of special needs counselors or support groups, because it has been four years since diagnosis and I think it's time.

Because this sweet boy of mine?

He deserves the best.

And the best is not someone who gets jealous of other families and can't climb walls.

The best is someone who gets help and has good coping skills and realizes how blessed she is, despite what she goes through daily.

The best is someone who hears about more weight loss and leaps over that wall without resentment and anger, because NONE of this is his fault. He does not deserve resentment and anger.

Because the truth is - this kid is awesome!

And when he smiles?

He lights up a room.

 

And I would do ANYTHING for him.

 

And that includes admitting that I'm flawed.

And that I need help.

And I think that includes hitting publish when it's scary because I'm worried this small corner of the internet will judge me and think I'm weak and that I whine too much. And that's fine. You're entitled to your opinions and those opinions are probably true. But please also think that I need prayers. Because this week? I need prayers. And support. And funny comments. And names of good counselors in the RTP area if you know of any.

And maybe a stiff drink or two...... ;)

Helloween 2014

Hate to say it, lest I jinx it, but every year gets a little bit easier and less chaotic.

I saw many parents lugging around tired toddlers all kinds of hyped up on sugar and adrenaline while crying because they are annoyed that their parents won't let them stop and shovel in mouthfuls of candy at each house along the way and I thought oh how I miss those days Suckers! Glad it's not me this year!!

I know, I'm so so sweet.

But before you judge me too harshly:

Please remember, I served my time.

This is still my least favorite holiday, but guilt from having to study so much the past few weeks earned the kids Halloween books, pumpkin carving, and roasting pumpkin seeds together.

That's right.

I was ALL in the day before Halloween this year.
And the Winning Mom for October 30th goes to......Rachel Fischer!
My reward was Halloween candy.

We did our annual Fischer/Holland Gathering.

We had Captain Rogers, Elsa, Harry Potter, Hermione Granger, a blonde Ron Weasley, and Draco Malfoy. 

So basically we had a crap ton of cuteness (and a horrible photographer) between the ages of 5-10. 

I tried to convince Todd to dress like this:

I don't know why he wouldn't? 

Someone on FB said he should embrace his inner Bronie, but he still wouldn't do it.

Instead we dressed up as........wait for it..........can you guess?

Ding ding ding ding.
Four Tired Parents!!
Our costumes were complete with wine, beer, and dark eye circles.

Before Helloween 2014, our family took a two day sojourn to the mountains.
It was amazing, beautiful, relaxing, and much needed!

I worked the night before so my road trip started off with big glasses to hide said dark eye circles and the only thing that keeps me going every day:

We had a blast hiking and climbing things at Doughton Park.

And in the car riding portions of the trip, Lucy decided she would sit wherever she could get closest to her humans......

Apparently including, but not limited to, Emma Grace's Lap?
Um Luce. You weigh more than her. She should be sitting in your lap.........

This little guy started some new medications and we're hoping/praying to see improvement in symptoms and some weight gain very SOON.

And that's about it on Helloween and Mountain Trip updates.

Enjoy Candy Eating Time!

It's officially time to let out the pants.....

That's right - The HOLIDAYS are here!

Oh, 2007 Britney, I get you.

Honestly?

Today was one of those days where I wanted to quit and throw in the towel.

Okay honestly?

This whole month I've wanted to quit and throw in the towel.

Today was just the day that I voiced that opinion out loud.....to my professor.......after making a C on a test that I studied my butt off preparing for. Well not technically. Technically my butt is getting bigger because when I'm stressed, I eat. And I've been seriously stressed for the last two months so you do the math. And maybe buy me some new jeans.

Anywho......she handed me my graded exam and I did what every respectable and mature 37 year old college student does: I burst into tears. Right there. In front of the class. Yup, it was most definitely one of my finer moments in life. And then I ended up in her office where I cried some more. And she encouraged me. And told me to get more rest. And told me to stop beating myself up because I still have a B in the class and this one test will not determine what type of nurse I am.  So then I stopped crying because I was upset with myself and started crying because my professor (who, btw, is younger than me) was calling me Sweetie and taking time out of her day to encourage me to keep going. And because apparently she thinks I'm sweet. Which I think we can all agree is not the first adjective that comes to mind when most people think of me.........

And I want to keep going.
Because I think if I can live through it, it will be worth it.

And sometimes God calls us to do hard things.

And a lot of people are going through things that are a LOT more difficult than this, so I should be able to handle a little schooling, right?

Oh goodness, please tell me I'm right.

I mean, seriously:



So even though I feel like shaving my head, bashing a car with an umbrella, and throwing my A&P book in the trash, I guess I'll keep going. Because truth is I'm not Britney. I can't afford nice wigs or rehab, and my dad is definitely not controlling my millions of dollars.

The Haps In My Brain

My poor poor neglected blog.

I miss writing.

There is so much chaos these days and sometimes I forget I need to stop, sit, and write. 

Be warned: there is absolutely NO, and I mean no rhyme or reason to tonight's post. Welcome to my head.

It's a mess. A random mess of thoughts. (Act surprised.)

I have nothing to say about these two except oh my gosh I love this picture and I love these two brothers and I love how much they love each other and I love that when I see them like this all I want to do is sing "Ebony and Ivory......"

School is.....well.....school.
And school is freaking hard.
And throwing in a part time job on top of that is yikes.
And there are so many things to juggle that I live in this constant state of guilt.
If I'm studying, I feel guilty that I'm not playing.
If I'm working, I feel guilty that I'm not home.
If I'm with the kids, I feel guilty that I'm not studying.
If I'm with friends, I feel guilty that I'm not cleaning or studying or playing or exercising or hanging out with that guy who lives here, I think his name is Todd, or sleeping.

I think you get the point.

And my house is a wreck.
Toilet rings and cobwebs kind of a wreck.

Literal quote from EG's friend the other day:?
"Mrs. Rachel, I love your Halloween decorations. Especially all the real cobwebs."

Why thank you, Ella. I left those up all year just so we would be ready for Halloween. I'm glad somebody noticed and appreciates my efforts!

And I fell asleep at the dinner table tonight.
Literally. Fell. Asleep.
Todd had to kick me under the table because Isaac was telling an important story about Harry Potter or Pokemon or football or farting or something that of course made me feel guilty for not listening.

And even though school is freaking hard and guilt inducing, at least when I'm there I get to hang out with this chic (and weird models). Her name is April and she makes me laugh. A lot. Probably more than I should be laughing at school, but oh well.

Owen and a friend's puppy.
No words needed.
Bliss. Pure bliss when he has an animal in his lap.

Emma Grace took another step towards adulthood and had her ears pierced with her best friend who happens to like my cobwebs.
Oh my word.
They were so cute.
And we had such a fun date night, just the two of us girls.
And I was sad because she looks even older now.
And I'm not ready to go there.
I'm just not.

And this was Owen's Pack last weekend.
We went downtown for the Autism Society Walk/Run. Our team raised almost $1700.
AMAZING.
I love doing life with these people.
They are always there to support us and pray through our challenges and celebrate our wins.

And that's it for the random peek inside my head.
I know, it was amazing.
You're welcome.

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.

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.

Again.

 

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......

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.)

http://www.medicalnewstoday.com/articles/274655.php

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!!

http://www.kintera.org/faf/search/searchTeamPart.asp?ievent=1105928&lis=1&kntae1105928=7D3242EBE091457C8345D4F7569C43FB&team=6093079