Dear Feeding Pump

I hated you when they first handed you to me. It wasn't that you were complicated to figure out, because you were far from that. It was simply the fact that my son required you. 

Without you and his feeding tube he would of lived a life inside the hospital hooked to IV's until he withered away. 

I grew to, not love you but respect you. You were the trusty little machine that kept it all going, giving me less sleepless nights.

The you decided to cause problems. Alarming in the middle of the night when the world was sound asleep. You sounded off like a tornado warning, scaring the crap out of me. Giving me a heart attack, just to tell me there was a flow error. 

And after fixing said flow error, you would alarm again. I would fix you again and again and again and again. Yet nothing worked.

We started calling and having you replaced. Still the newly delivered pump would start the same process of alarming just a few days after delivery.

Your alarms have put much added stress onto my life. They've caused my PTSD and anxiety to soar high. I have nightmares of the pump alarming. I sit there at night listening to the gears wind, pulling formula through and pushing it into you. I sit on the edge of the bed, my heart racing, biting my nails knowing that no matter what I do the alarm will come. It's just a matter of time. 

Nothing can prepare me for your error alarms or the flood of emotions and anxiety that comes with each and every siren, because that's what it sounds like. A siren going off in the middle of the night warning us we are under attack and that the bombs are surely about to drop. That's how my body reacts anyhow.

Every night I sit on the edge of the bed, shaking and waiting. When the alarm goes off all I can do is silence it and go through the list of things to check. And try so hard not to cry in frustration. Of course there is nothing wrong with the line. There is no "downstream occlusion" as you warn there is. Nothing. Everything is fine. Yet you still alarm. 

Finally, after hours of fighting the pump, I turn it off and resort to bolus feeds through out the night. No longer am I getting any sleep because I need to be up every 2 hours to bolus my son and that's still not as much as he gets through the pump.

And I cry. Because I see that my son isn't gaining weight. In fact he's loosing it because he gets more through the pump than I can possibly bolus.

So dear trusty, dependable pump.....

Your a jerk. You've failed my son. You've failed me. You are no longer a useful member of our family. No longer a trusted piece of medical equipment. I no longer have any respect for you and just want you out of my house!

Note: The pump brand in question is the Kangaroo Joey and the Kangaroo E pump. The events posted above are true. I've spent years fighting with both the pump and the medical supply companies to replace the pumps. We've gone through countless and it's been frustrating. After 3 years and 5 months with a Kangaroo, I've requested my sons insurance to change out our pump to the infinity. I know many people who have made the switch and have had no problems at all with their infinity. I was also told by insurance and the supply co that the Kangaroo is no longer being made. My suggestion to you is to not wait it out and fight with the Kangaroo as long as I have. Because of this my anxiety runs high. What I wrote above saying how I felt is all true. 

Halloween Magic

What happened to that mom?

That mom who decorated every holiday no matter how big or small it was?

This year she is gone.

Hiding some place refusing to come out.

I don't have the energy this year.

I so wish I did.

I want to get past this chronic fatigue and chronic pain,

hoping that decorating will make me feel better.

Is it even possible to feel better?

Is it even possible to push past this?

I have no clue.

I wish I could bring back that mom who got overzealous about all the holidays.

That mom that no matter what decorated.

That mom who always baked for every occasion.

That mom who was just so desperate for something normal that she made it happen.

What's changed?

Yes I have fibermyalgia,

but I know I've had it for some time.

It only got worse coming up on a year ago.

I want to dig through the decoration.

I want to scale the counters to hang things from the ceiling.

I want to stand on my tippie toes on the top of the step stool to hand fake spider webs.

I want to hang black gossimer in the windows,

black paper owls on the door,

glowing eyes in random places.

I want to stand back at the edge of the yard and admire my work,

knowing that all the kids in the neighborhood will point and laugh,

and be excited about Halloween.

Halloween is my favorite holiday.

You get to dress up and become anyone you want.

You get to scare and be scared just for laughs.

And most of all,

my husband proposed to me on Halloween.

At 2am.

When he didn't even know I LOVED Halloween.

It was meant to be right?!

And even though things have been difficult since Liam was born sick,

I still love him with all my heart.

Even when at times I feel it would be easier to leave him,

I still love him.

Love isn't easy.

Your supposed to work for it,

make it work.

Because otherwise it isn't true love.

So maybe that's why I am so saddened by the fact that I haven't decorated.

In my own way,

it's me celebrating the day he realized he loved me ad couldn't loose me.

Halloween is magical.

It's when everything we don't believe or shouldn't believe in comes alive.

It's the only time of the year where the taboo is not taboo.

Princesses find their princes.

Or happiness in HUGE bags of candy.

Ghost and witches fly around from door to door saying the magical words that get them candy,

trick or treat.

Everyone can be who they want to be.

For once they can have hope and see the "magic" of this world.

It's great fun seeing all the costumes.

Watching the kids fill their bags with candy then later gorge on it.

Fun Halloween games,

bobbing for apples,

haunted hay rides,

haunted forest.

Hogwarts come to life,

whole blocks turned into pirate ships.

Halloween is about discovering the magic.

I want to rekindle old memories.

I want to show my kids that there is magic out there.

I want to see their faces light up as the house transforms from just an ordinary home,

to something greater.

So can I get my body to cooperate?

Can I work past this?

I honestly don't know.

What I do know is that I want too.

Instead of sitting here feeling sorry for myself,

I'm going to get up and at least try.

I shouldn't give up before at least trying.

My kids need to know that even if you fail,

it's ok because at least you tried.

You don't give up before the game even starts.

Sunday Surprise

Today we surprised the kids with a swing set daddy worked really hard on building. We also to the sand table up to help Liam with his texture issues. At first he refused to touch it because he didn't like it but after about an hour of using sand tools he started putting his hands in the sand just feeling it. That's pretty amazing and such improvement! 

We had a great Sunday!!

Liam is still fighting his tube feeds. He runs away when it's feed time and scream the entire time. They don't hurt he just doesn't like them and would rather eat by mouth. Problem is he's not eating enough by mouth yet to stop day time feeds. He is however gaining weight finally. He's actually getting chubby. His legs, belly and face. His arms are still skinny. I've seen many CDH survivors and all have skinny arms. A lot have little upper body strength as well. I'm thinking it could be a CDH traight. Most have messed up ribs like Liam and are skinny most their life's. Even adult survivors I have seen. His legs seem to have lots of muscle in them. We've been doing diaphragm exercises to help strengthen his. He's been trying to blow whistles and he's actually making good noises. He can't blow bubbles yet but we're working on it. It helps that his big sister tries to teach him all kinds of stuff by just playing with him. She's so good with him. He would follow her to the end of the earth and back he loves her so much. I'm so glad they get along so well.