Poop and Pain

Ever gotten on a roller coaster because you felt like you had no choice? Maybe your friends talked you into it and you thought, okay, I can do this. And then you start climbing that hill and you want off. Good lord you want off more than anything in this world, but it's too late. You're already strapped in. You're gripping the rail in front of you so hard that your fingers are turning blue and while your friends are throwing their arms in the air and screaming, you're holding on for dear life, praying the straps are accurately secured, and trying your best not to soil yourself?

That's how I feel this week.

I want off this damn roller coaster.

I've had enough.

My family has had enough.

My son has had enough.

Enough.

He had to spend his sixth birthday at the hospital. And I'm not even gonna try to sugarcoat that. It sucked. And when he figured out where we were going, he did what he does. He screamed a lot about it, and then when we got there, he asked to be carried in, and then when it was time, he pulled himself up, got poked and prodded, and did what needed to be done. That's who he is. He's anxious and scared.....but when the shit hits the fan? He's one tough kid.

And (please excuse my language right now but this is actually very tame compared to the words I'm saying in my head.....) the shit really hit the fan this week. It hit the fan and exploded all over us. I know; I paint a pretty picture. Right? ;)

He did gain weight which was awesomesauce. 

Seriously awesome and much needed.

But we also met with a team of specialists who feel there may be more going on. That means take his already crappy chronic illness and autism and add even more to it. Seriously?!  And the more that may be going on breaks my freaking heart. It has to do with possible swallowing problems and nerve endings and intestines and chronic pain. And I don't even know what to say. Literally.

We are not where anybody thought we would be almost two years into the feeding tube.

We are not where anybody wants us to be.

We are struggling.

We are running even more tests.

We are starting new drugs.

We are considering the option of more feeding therapy.

We are learning that, most likely, he has even more pain than he lets on. 

We are letting that information sink in and it is breaking our hearts.

Breaking.

And then I look at this picture of him that very night. Playing with his calculator that he got for his birthday. His calculator + that smile + the day we had = toughest kid I've ever met.

Y'all?

This kid is amazing.

And y'all?

His mama is tired.

And she needed to vent.

So thanks for reading about poop and pain.

You're welcome for the awesome imagery.

Happy Friday.

Please pray for us.

Birthday Boy

Six years ago you came hurtling into our lives with your white white blonde fuzz, your amazing blue eyes, and your amazing ability to scream at the top of your lungs when you sensed the presence of food on the horizon.

Today you still amaze us with your white blonde hair, your amazing blue eyes, and your amazing ability to scream when you sense the presence of food on the horizon. Some things never change.

But boy have you changed us.

You've changed me into a person who better understands the unfairness of this world.

You've changed me from a person who used to think different meant "less" to a person who knows the truth now.

Different means more; so much more:

More patience, more sorrow, more joy, more heartache, more empathy, more tears, more humility, more responsibility, more celebrating the small things, more laughter, more, more, more and then some more.

And even though every day I wish I could take away your intestinal pain, your emotional frustrations,  your social anxieties, and the feeding tube that we have a love/hate relationship with, I know that without those things, you would not be you and I definitely would not be the me that I've become because of the you that God created.

And you and me?
We've got our issues, but dang if we're not a pretty good team together.

So Happy Sixth Birthday My Sweet Boy!

I'm so sorry you have to spend it at the hospital this year, but maybe our birthday gift will be a massive weight gain! Wouldn't that be something?!

In true Owen Fashion,
I hope your sixth year is full of love, animals, and giggles.

And then it was 2015.

Long time, no blog post.

Christmas 2014 went by in a crazy blur of family, friends, laughter, gifts, more family and enjoying time together.

The kids enjoyed their two weeks off from school. Todd and I enjoyed our time with them the most of the time. The rest of the time was spent looking into boarding schools...... ;)

We ended our vacation with a stay at Great Wolf Lodge and they had a blast.

Now it's back to the real world of school, work, more school, and more work.

2015 is here.

And as always, we never know what a new year will bring.

Praying it brings you and yours many blessings, and we're especially praying for peace for two families that we personally know are hurting right now. Praying God brings miracles and healing hearts.

Happy 2015.

Hogwarts

I have been parenting for a decade.

A whole decade.

I have a kid in the double digits. 

What the what?

And she wanted a Harry Potter birthday.

So for a slack mom whose idea of a nutritious lunch is making sure the kids have packaged crackers AND a string cheese, I gotta say, I Hogwartsed the shiznit out of this party.

We had cousins, friends, potions, butterbeer, live animals, and even a mystery to solve.

And this ten year old daughter of mine?

Love her. 

Love her love for reading and all things Harry Potter.

Love her passion for learning and her sweet smile.

Love that she complicated my world and made it so much better all at once.

Happy Birthday, Emma Grace!!

FAFFV

I married into an Acronym Loving Family. They are the Kings and Queens of Acronyms. (Mainly the male side of the family. Us females just tend to say actual words.....) So what is the Title of this post? I have no freaking clue. But it's what my father in law called our family vacation. I think it's supposed to be something like Fischer Annual Family Fun Vacation. Or Five Apes Flying For Victory. Or Finally Another Fischer Family Vacation. Or Find Another Fifty Five Vodkas. I don't know......something like that.

Anywho - No matter what it is called, we went, we played, we laughed, we drank, we fished, we hiked, we shared, we shopped, we laughed some more, and basically, we had a much needed freaking good time!

And I mean it when I say I am so blessed to have married into this family. I know that in-law relationships can be tricky and things don't always go perfectly, but dang if these people don't know how to support us and have a good time! I laughed so hard that my stomach literally hurt for like two days. And this was in the midst of Owen tanking and us knowing we were most likely going to end up at the hospital upon return. We did.

But that's another story for another day. This story is about family and fun!

I love this picture of Emma Grace walking and talking with her Grandma.

(I imagine they were talking Harry Potter.........)

And these two. Oh dang. 

If only everybody could only be lucky enough to hang out with them.

 Seriously. Stomach hurts. It was a good ab workout. ;)

"I'm all about that bass. Bout that Bass. No Treble."

 

COUSINS!!!!

Uncle Kevin is so so good to this lil' guy. He played this game over and over and over and over and over and over and over and over and over and over and over and over again.

 

Love......

 

Love these Fischer Men, who are apparently now models? Who knew? I'm pretty sure this picture will be in GQ next month. Tennis shoes, flannel shirts, and Redskins apparel are all the rage right now.........

So to sum up? 

We had an awesome time.

Thank you Grandma and Chips for opening your home and pushing to make this happen! It was so so so so so so so so so so so much fun. 

Can't wait for Thanksgiving and more abdominal exercises!

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!