"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, June 5, 2009

Not in the Mood

Well friends, I wish I was in the mood to post something funny and cute, but I'm not.  I have some things weighing heavy on my heart and mind lately regarding Marissa and our plans to move forward toward getting her trach out.  I am wrestling with fear and doubt right now.  I plan on discussing these things with her doctors before I go into anymore detail here ~ not wanting to put the cart before the horse.  There are just some things going on that Jeremy and I feel are not normal and we need to get to the bottom of things.  I apologize if this is confusing to you and you feel left in the dark.  Please just know she is well and not in any danger, but it looks like the road to decannulation may be longer than we hoped.  I ask that you pray for answers to these issues and for peace and strength to deal with whatever the future holds.  I promise to share more when I feel the time is right.  Thanks in advance for your understanding, prayers and support.


I will say that we as a family are excited for tomorrow.  We are going to have our Trach Kids Summer Kick Off picnic in a park in Denver.  We have gotten together many times over the winter as the Mile High Trach Moms group, having to leave our kids behind because of the higher risk of illness during "respiratory season".  I am so excited to see these kids who we have not seen since late September.  And I'm excited to meet some "new recruits" that some of the moms asked to join our group after meeting them in the hospital over the last several months.  Should be a great time and I will be sure to post pictures when we get back.

9 comments:

The VW's said...

I'm so sorry that these things are weighing heavy on you right now! Sometimes it seems like we will never reach the "end of the road", doesn't it? I'll be praying for your family and thinking of you too.

Have fun at the picnic tomorrow! What a great experience for all of you!

And, isn't is wonderful that the germy season is behind us?! I feel so free after spending so many months locked away to keep Gavin healthy!

Hang in there! HUGS!!!

Nana and PaPa said...

I know this is a tentative time...wanting the best for Marissa and wondering how and when this will happen. We'll be praying for all of you.
Tomorrow....REVEL in the wonderful opportunity to connect with the "trach" kids and parents. It's so great that you have "new" friends joining you. This group is SO important to all of you...kids and parents...to socialize and keep that isolation at bay. I'll pray for GREAT weather tomorrow. Love you guys...Love, Nana & PaPa

John and Jenna Gensic said...

We are so sorry to hear about this bump in the road. These kids are so complicated, aren't they? We are praying hard for you guys.

Jenna

Colleen said...

I'm sorry you that you have a heavy heart.

It's so hard I'm sure to juggle what would be best for Marissa's health and also what would be so totally awesome for the family...a trach removal! I sometimes wish with Isaac it was simple. Why does it have to be so complicated?

That trach group sounds wonderful! I wish we had a support group like that here. Take care, I'll be praying for you!

KH said...

Sorry to hear you're down and doubtful right now. Will be praying for your peace and wisdom in decision-making, as well as for strength for patience.

Hope said...

I'm so sorry there are new complications. I wish I could hug you, I know you need it. I'm praying.

Have fun tomorrow! Give Marissa and Faith (and any other bloggie kiddos)hugs from Ava. Take lots of pics!

Michelle said...

Girl, I feel you. I'm sorry things are (well I was going to say rough right now, but heck, its always that way, right?) hard. Hard all the time and decisions difficult. UGH. So easy going in, but coming out is like eternity...know what I mean? I'm praying for you always.

Michelle said...

I hope and pray things go Marissa's way.

Have fun tomorrow with the group!!! Yea!!!

Love,
Auntie Chelle

Arrington Family News said...

Praying for you and the decisions you face with Marissa. Know that you know your baby the best and if you have some red flags and concerns those need to be addressed first before proceeding. You're so great to post your fears and doubts.