"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

Wednesday, July 15, 2009

This Sucks!

That is the way Alicia, Gavin's mom, described finding out Marissa will need major reconstructive surgery on her airway.  So simple, yet so appropriate.  THIS SUCKS!!!!!  Thanks Alicia for hitting the nail on the head so perfectly.

I have really been struggling over the last couple of days.  My face is breaking out, which it tends to do when I deal with great stress.  I didn't really break down and have a good cry until I read the blog of a little boy who had a Laryngotracheoplasty (LTP) to be able to get his trach out and I saw pictures of him post-op.  He was intubated, sedated and paralyzed.  He looked so peaceful and yet so pitiful at the same time.  I have seen Marissa and countless other kids intubated and post-op, in person and online, so I thought I was going crazy when the pictures of this little boy made me bawl like a baby.  In my mind, I saw Marissa lying there, intubated again, tubes and wires hooked up all over her. Helpless.  It just breaks my heart that someone is going to cut on my baby.  Again.

I think I am going through the Kubler-Ross model of the five stages of grief.  I have gone through denial, anger, bargaining, depression and acceptance several times since finding all this out on Monday.  Even though these stages are most applicable to death and dying, they can also apply to this situation.  And, in a way, I feel something has died.  The hope that Marissa would be able to avoid another major surgery and be able to get her trach out without complication or struggle. Just to be clear, I am not as disappointed about her not getting the trach out soon as I am with the realization that it will not happen without surgery.  We can wait as long as she needs us to, we just want to know that it can happen at all, if this makes any sense.

I am still too dazed and confused to go into any planning at this point.  I keep trying to and then just get overwhelmed by all the questions and unknowns, the "I'll have to check on that, or see if this is covered, and we'll have to make sure and do this" part of it all.  And I still have some big questions for Dr. E that just didn't come to my mind on Monday.  I am thankful that I have a sister who is a speech pathologist because she knows quite a bit about this.  She is going to help me in the near future to come up with questions that she would want to know the answers to and questions she thinks I may want to have answers to but don't know enough to ask.  Thanks Michelle!

Thank you all for loving on my family during this time.  Your prayers and messages of love and support, both on this blog and on Facebook, really mean so much, I just can not put it into words.  This blog and being able to reach out to others whom I have not yet met, but who are walking similar paths has been such a blessing to me.  It has really helped save my sanity.  I really see you all, not only as friends, but as an extension of my family.  You guys are the best!

8 comments:

The VW's said...

Yes, this definitely SUCKS!!!!! It sucks that things just can't go easily, it sucks that you have to feel pain and stress over this, it sucks that poor Marissa has to have another surgery, it sucks that you are so far away and I want to be able to give you and Marissa a great big HUG! THIS SUCKS!!!

First thing this morning I thought of you and prayed for you. Since I'm so far away, and this is all that I can do for you, know that I will be doing this often! Keep venting and keep praying! LOVE and HUGS!!!

Hope said...

I'm so sorry Alicia. This post made me cry. That surgery scares me too. I hate that these kids have to go through any of this. Hasn't Marissa been through enough? You'd think so!

I would take a deep breath, say a prayer and trust in Him. He'll see her through this surgery and she'll be a happy, breathing beautiful girl soon afterwards. Everone who's child has had the surgery (that I know of) says it was the best decision.

Honestly, I'd go to Cinci. The entire team is used to treating out of state families and has a wing reserved at the RMH (which you can stay at for free). Dr C can get that trach out. No more worrying what each little squeek is or if Marissa is actually ready or not. It will be done by the best. No second guessing.

((Hugs)) You're in my prayers.

Momof5 said...

You're an awesome lady! I'm so sorry you're having to go through this! I agree wholeheartedly "THIS SUCKS!" We're here for ya babe! God Bless!

Janay said...

prayers are being said for you & jeremy & little marissa too. I hope you find peace in your heart and answers to all your questions.

Hugs,
Janay

Nana and PaPa said...

When I read Hope's blog comment, I got chills and tears of deep awe and gratitude that the hospital in Cinci has a wing for RMH just for out of town families.....what a BLESSING! I'm so grateful that you have SO many "blog friends". It's such a comfort to me to know that these families are so supportive of you, and you of them, because of your commonaliities. Your situation does SUCK....BIG TIME!! But with time, I know you and Jeremy will make the best decision for Marissa's future. We love you guys and continue prayers...always...
Love,
Nana & PaPa
P.S. I just LOVE some of the word verifications they come up with...lol. Today is "mialso"....so...I guess I could say Marissa's situation sucks for 'mialso'...ha ha. I know....corny humor

Jessica mommy to Alex/ RTS said...

I cant imagine raising a special needs child 20 or 30 years ago, and not having the support that I do now. Although 20-30 years ago, Alex would have died. I feel like all my bloggy friends are my best friends.
Im so gald you feel you can redeem your sanity, that means you will make it!

Dana said...

I am very sorry! I am sure your frustration is maginified since you had other plans for her this summer.

We will continue to pray for you all.

Maybe Hope is right and the Dr. C can help.

Finding Normal said...

I don't know why I'm just now reading this, how it's slipped past me in my blog hops.
But I'm sorry. I'm sorry you're facing another surgery and more trach time.
And I so get the stages of grief. I think I have PICU post-traumatic stress disorder. If someone called right now and said Addison had to go to PICU overnight, even being currently healthy, I would cry and freak out. So knowing that's where we go after surgery always makes it worse for me.
I'll be praying for you guys!