"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - Shel Silverstein

Friday, April 10, 2009

There Will Be a Day

There is a really great song called "There Will Be a Day" by Jeremy Camp. If you are not familiar with the song, please click on the link below and listen. The song (or a particular lyric from the song) is integral to this story.

Even if you are familiar with the song, I highly recommend you click on the link anyway and watch the video in fullscreen mode.  Someone took the song and added some very beautiful images to it.  It will really get you in the right mood for this Easter weekend!  :)


Now for the story:

Marissa hates to be suctioned. We have to use this awful contraption my friend Hope has lovingly dubbed "evil thing".

We have to squirt saline down her trach to break up the junk and then stick this tube down her trach to suck the saline and the junk out.
I understand suctioning her trach has got to be uncomfortable.
We have to lay her down and sometimes restrain her just to do this.
I apologize for the poor quality of the video. It was too dark for the camera to focus correctly.
She used to not mind the process so much. She started throwing fits around the time she got pneumonia in February. I think it really bothers her to be suctioned when she is sick. It hurts to cough and we have to suction so much more often. I think she has just developed a habit of fighting every time we have to do this.

Every time.

Thankfully now that she is wearing her PMV all day, we only have to do this when we take the PMV off which is only a couple of times a day.

This morning I needed to suction her and, as with any unpleasant experience Marissa has to go through, it is made better by playing music or a video. Jeremy Camp's "There Will Be a Day" came on, but Marissa still fought me. She fought me so much (what you see in the video above is mild) that I had to put my leg over her body and contort my own body just to get the job done. As I was doing so and as I was thinking about how I hate what I have to do to her and to myself just to suction her, the lyric "there will be a place with no more suffering" came on.

Now, please don't think that I am trying to make light of the song or its beautiful meaningful lyrics, but when he sang that line, I heard "there will be a place with no more suctioning". Seriously. And I had to laugh to myself. And then I laughed out loud.

Sometimes my doom and gloom attitude and my pessimism gets to me and I think we might never get rid of the trach. Marissa's trach brings with it so much extra stuff, so many extra tasks, so much extra unpleasantness. When I heard that line and converted it in my head, it reminded me that all of this is temporary. I know of kiddos who will never get rid of their trachs. But this song reminds me that there will come a time when we will all be whole, a place where trachs and suctioning will be no more.

There will be a day.


Michelle said...

Well said my fellow trach Momma,it's too real to be surreal you know?

BTW-Did you know there is a travel case for the suction and a car charger? Just in case CrApria never offered...

Momof5 said...

I just can't say in words what I feel about you and your life. But what the heck, I'll try! You are one awesome mommy, wife, person, daughter, sister, friend, child of our everlasting Father! Girl I love to read your blog. What your ordinary day brings is an absolute inspiration to those of us who have the privilege to know you in person or blogdom. You, my dear, need to write a book one day! God has blessed you with an amazing family with J and Marissa! I love to watch God work in you, on you, with you! XXXOOO! God Bless your suctioning and your temporaries and your new ability to write songs! LY!

Hope said...

Alicia, we have the same evil thing! and those evil tiny suction caths. Poor Marissa, Ava is planning a rescue mission right now. I wonder who will drive the getaway car?

Seriously, Ava hates that too and she's not even trached. One day we will dig a huge hole and BURY all these evil things!! (or just blow them up)

Michelle, we have the car charger, but I don't think we have a case. I'm off to look for the box it came in.

I love that song, btw....

Kendra said...

That is a great song--I'd never heard it before, so thanks for sharing. I'm glad God gave it to you. I'm sure He meant suctioning in that moment! Hopefully the suctioning will be over soon--I hate having to do things my kids don't like for their own good and mainly have to do it when they're sick--I can't imagine having to be strong and be the mom for that stuff all the time. Anyway, there WILL be a day. Thanks for the thoughts. Happy Easter!

John and Jenna Gensic said...

Ahhhh! Suctioning! I feel your pain. We are fortunate to still use the ballard (even when he's off the vent), which makes it a little easier, but I can't wait for Mikan to be able to wear his PMV more frequently so we don't have to turn on that awful rumbling several times a day (or hour depending on his current condition).


Ann said...

I love your spin on the song :) I agree ... suctioning is the worst! Have a very happy Easter!


Dana said...

Good Reminder that one day our kiddos will be made whole. Beautiful thoughts. Maybe He wanted you to remember that. Have a wonderful Easter weekend. Thanks for your comments.

The VW's said...

What a great lesson for us all! Thank you! And, your version of the song is so true as well! :) What a wonderful thought, some day......until then, hang in there Marissa and Momma!

Hope you have a wonderful Easter weekend!

Nana and PaPa said...

No more suffering...no more suctioning...I think they're synonamous...lol. I have to agree with a couple of the other bloggers...I think God's message to you at THAT moment was.....no more suctioning. It's that little...God "whisper" that re-assures you, and reminds you...HE is right there...HE is still with you always...even at those yucky times of suctioning and unpleasantness. Someday...ALL things will be new...ALL suffering and pain will pass and be no more....inculding NO MORE SUCTIONING!!! Thanks for sharing such a beautiful song/message with such awesome pictures. As usual I cried tears of joy, knowing that Christ died for us and our sins...and tomorrow...we get to CELEBRATE His RESURECTION! HALLELUJAH! We will all be in His light and He will make ALL things new! Love you....Happy Easter!
Nana & PaPa

The round-the-worlders said...

Happy Easter to you all. I agree that you should write a book. Your way of communicating your life is beautiful and moving. Maybe all your blogs can be compiled into a book, that would help make it easier. I really think it could be a best seller. Strong willed....runs in the family. Good thing, too.
Love you lots, Arnie

The Marini's said...

Great post. I cannot wait for the day to no longer see Gabe in pain and not having to see him being suctioned, bagged, having seizures, etc.

I wish the same for Marissa and all the other special children that I follow!!!

Much love,