"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

Thursday, July 16, 2009

Stepping Out of the Funk

I think I am finally snapping out of it and coming to grips with this. I have been feeling better and have even smiled a time or two! {Insert sarcasm here} I have had several one-on-one chats with The Number One Man Upstairs and He assures me He is in control. He knew all of this an eternity ago and we just have to trust in Him to guide us down this new path. I have been immensly touched and humbled beyond belief to read all of your messages of love and support and to hear how many of you have been speaking with the Big Man on our behalf. While I don't think I am quite ready to take on the monumental task of talking to docs, insurance companies, Medicaid, and organizing and arranging Dr. appointments, possible travel plans and accomodations just yet, I am ready to step out of the funk I have been in.

For those of you who may be wondering about a timeline, we are projecting that she will have surgery sometime next Spring, for several reasons.  First, she is not in danger and her health status has not changed, so this surgery is not an emergency.  Second, we don't want to put her in the hospital during the Fall or Winter months when she would be most vulnerable and exposed to germs and sickies for a non-emergency surgery.  Third, we would not be able to arrange a surgery of this magnitude before Fall arrives.  Depending on which surgery is done and if it is successful, she may be decannulated during the surgery or she might have to wait a few months to recover and then be decannulated.  Either way, we are cautiously hoping that around this time next year, she will be trach-free.  Keep in mind that we are only projecting and this timeline is only based on the limited information we have gathered so far, so it might not be accurate.  It could all happen a little sooner or much later.  We have not even started the preliminary research neccessary to get this all taken care of.  And, even though this is one of my biggest personal struggles, I am going to try not to focus on a timeline and try not to get my hopes up because I know how quickly it can all come crashing down.  Hence, the last couple of days.  And besides, it is God's timeline that we are working on, not our own.

Once again, I am reminded that we are very blessed in this situation.  There are so many other trach kids who will never be decannulated.  There are so many other parents who have had to say goodbye to their babies here on this earth and are left behind, waiting to be reunited with them in Heaven.  We are blessed beyond measure because Marissa is here with us, she is healthy and she has a great chance to be decannulated successfully.

And now, I feel the need to move on for the time being.  
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Jeremy and I were unable to procure a temporary child technician last weekend for our anniversary, (in other words, Auntie Chelle was at the lake with her friends all weekend and was not available to babysit), so we are going out to celebrate this Saturday.  We have decided to take a day trip up to Cripple Creek and try out the new Colorado gaming laws that went into effect a couple of weeks ago.  We are looking forward to some time away, even if it is only for a few hours.  Jeremy and I have already agreed that we are not allowed to talk about the latest development in the Marissa Saga, so it should be fun and relaxing.  I can't wait!!

On a final note, I'd like to share with you one more OT session Marissa had yesterday.  I only thought she had gotten really messy in the past with her shaving cream sensory routine, but this time, she did it up right!  Take a look:




I love this video because the look on her face makes me think she was wondering "how the heck did this happen?"  She looks so bewildered and is completely speechless.  Hilarious!!
video

7 comments:

Queen Mommy said...

I love, love, love the video! She looks completely, hysterically bewildered!

Enjoy your anniversary celebration.

We'll keep you all in our prayers during the rest of your decision making. It's never easy when our hopes and desires come crashing down before our eyes, but knowing that God is always there and always in control makes it a little more tolerable.

The VW's said...

OH MY! She certainly did go to town, didn't she?! How fun and how funny!

I'm glad to hear that the funk is starting to go away! Some days it feels like it can't get any worse and how can I do this?! And then God brings out the sun again! I pray that the sun starts shining brightly for you sweet friend!

I'll be praying! There is such a comfort knowing that we are on God's timeline and plan! Some days I wish that I could intervene, but then I realize my plans wouldn't be as good. Such an emotional journey, this thing called life!

Love, Hugs and Prayers!!!!!

Hope said...

LOL, Love the mess, Marissa!! I think you might've missed an itty bitty spot. haha

I hate not having a timeline or schedule. I understand your struggle with it. I'm always thinking of you guys and praying!

Colleen said...

I'm glad you had a good talk with the man upstairs. Why is it so hard to remember that he's in control? It's so hard sometimes to let go when we want all the answers..today.
I hope you and hubby have a great time on your getaway. That will be a nice refresher for both of you!

Nana and PaPa said...

Well, you've heard me say it about myself many times. I have the HARDEST time letting go and letting God...lol But, you are totally right...He IS in control and knows the plan. We don't need to be, (and He really doesn't want us to be) the navigator. Glad the funk is disappearing. Time to move upward and onward....to a WONDERFUL getaway. Win lots of money...and remember who yo momma is! LOL You could....SHARE THE WEALTH! LOL Have LOTS of fun guys! Enjoy!
Love,
Nana & PaPa
P.S. As I watch the video, I think that's the ONLY time I've actually seen Marissa with that true bewildered look on her face....it's so funny! But also...how WELL she is doing! Cool!!

Finding Normal said...

I'm glad you're feeling better, and I hope things will continue to improve. Definitely DON'T talk medical crap on a date--that's like an official Warrior Mama rule! Good luck and HAVE FUN!!! :)

ANewKindOfPerfect said...

I just got caught up on the last few updates on your blog. Alicia is right, it sucks! But in the end, if it is for the best .... ((hugs))

I love the video in this post. She looks SO totally bewildered, it's adorable!