Or Get Busy Dyin’.
If you have known me for any amount of time or have read the blog for more than a few posts, you will know that this is one of my favorite all time movies/books – The Shawshank Redemption. Ben and I happened to catch the last 15 minutes of this movie the other night, and I was reminded again of why I love it so much. The poetic prose, the way the theme of hope weaves through the movie, the wonderfully soothing voice of Morgan Freeman’s narration – and this final scene which pulls it all together. It starts out with the quote that I love – Get busy livin’, or get busy dyin’.
And for some reason, after i of course broke down in tears watching the final scenes, it filled me with a renewed sense of resolve to get my baby better. To live our life again, with whatever inconveniences and medical procedures that may entail. To hope for the best, and keep moving forward. That is the best medicine for my baby, my family, myself. Time to get busy livin’.
We made a few trips out yesterday – to MOPS steering team meeting and then to small group last nite. She got her PICC line pulled yesterday (by a healthy nurse – yay!), had a horrific round of reflux which left her limply laying on her side trying to catch her breath again, smiled and played and moved her arms towards objects by herself and all in all had a very full day! we got Early Intervention assessments started, made a small step of progress towards the insurance formula issue, and just had a basically normal day. I hope we have more of those.
*to answer a few questions i have received via comments and email: a.) yes we have been assigned an insurance case manager. She can’t really help with the formula thing until we get a doctor to call in. Once that happens, she will ride shotgun on it to ensure that it goes through. Our home health care company is doing most of the stuff she would normally be doing anyways, so we are doubly covered. Now to just get a doctor who knows the full story AND has ten minutes to call in to our benefits line! (did anyone sleep at a holiday inn express last nite and wants to pretend to be a doctor?!?!? Anyone? Bueller?)
b.)THIS is why the insurance covering formula is so important. That amount right there will feed Kendall for slightly more than a week. We have to mix her formula at almost double strength to boost the calories up enough to keep her gaining weight (which she IS doing! Hurray!) Huge thank you to our new friend Gayle, who had a large case delivered to our house from the company yesterday! Such an answer to prayer!
Then came night time – where the pump was going all wonky so her feedings got messed up, which made her tummy hurt so she was crank-o-matic, then kealey started puking over the side of the bunk bed, narrowly missing puking on her sister who has the unfortunate placement of being on the bottom bunk. Then Ben started feeling sick (well, i guess he’s been feeling that for a couple days now actually) – all in all, not a fun night. Thank God for Ben getting most of the pukage stuff cause I just could not have handled that! So i pulled early morning duty with the baby and a cranky Kaylen, waiting for our wonderful dear chiropractor/friend to come to our house to adjust Kendall so that all her other therapies can work even better and faster on her little system.
We have always had our whole family receive chiropractic care and I firmly believe that is part of what kept Kendall from being even worse than she presented with at the hospital. i am struck by how very lucky we were to be sent to Children’s, and to become one of Dr. Aljadeff’s pet projects (he is continuing to lead her “team” and be her main specialist, in spite of the fact that he is a CF/pulmonology doc). I have found a message board for parents of kids with hypotonia, and all its various entailments, and I am stunned at how many of them are at 3-6 month out waits for MRI’s, bloodwork, specialist visits – JUST to get to the level of answers that we were able to receive in one “badda-bing, badda-boom” visit to the hospital. God is definitely protecting over Kendall, and in spite of how crazy hellish it seemed last week with the non-stop testing, I am so very grateful that we were at where we were at, and that we were able to at least clear through some bad stuff.
It remains to be seen where we go from here. and some days that is easier to swallow (ha! no pun intended… you know, cause kendall can’t swallow….nevermind…) than others. Knowing that she will not even be able to attempt bottle feeds until mid-May is saddening. Feeling like i will never be able to stay on top of all the follow-up specialist appointments, and therapy appointments, and insurance issues – that is overwhelming. Knowing that so many people want to help and yet I feel like I do’nt even know where to begin asking for help – that is frustrating. I know I am learning a lesson here, somewhere, someway. I just can’t quite see what it is.
don’t get me wrong though – I am not morose, or overly sad. I am not even throwing a pity party with myself as the guest of honor! I am just …..processing. Out loud. Well, on paper. Or screen. Whatever. You know what i mean.
But things aren’t that bad overall. Someday we’ll have more answers. Someday my baby will be caught up, and my days won’t be overtaken by her care. But someday can’t come until we get through TOday. So TODAY i will get busy livin’.
a huge wonderful thank you to everyone who has brought or sent meals or other help. i am overwhelmed with each new update Robyn gives me about our continued care and help from so many of you. The cards and emails and comments of encouragement mean so very much. Someday i’ll figure out a way to properly thank all of you.
i hope it is a gloriouslyrelaxing weekend for all of you. I pray that you are all lifted up in blessing this weekend, somehow, in some way. May health be heaped upon your household and GO TO BED EARLY tonite!
Is it just me or is anyone else in absolutely NO position to lose an extra hour of sleep tonite????
And because these two things have been annoying me since YESTERDAY – I bring you two tips to help your McDonald’s Drive Thru experience go even smoother. These are for the clearly uninitiated, of whom line seemed to be full of yesterday as I was trying to order lunch:
1.) The “2 car lengths” safety buffer DOES NOT APPLY when in the drive thru line. You are permitted, in fact, ENCOURAGED to go ahead and pull up near the bumper of the car in front of you. When you decide to keep 2 car lengths between you and the car ahead of you – the system fails. No one behind you can pull up to the speaker, pay Or get their food in the timely manner the drive-thru was designed for. so PULL UP please!!!
2.) The handy little drive-up trash cans are NOT your personal car clean out stations. You make a SLIGHT pause to toss some READY trash into it (say, to empty your cupholder out so you have room for the two large sweet teas you just ordered), NOT to sit there for five minutes cleaning out your entire car. When you do this, no one behind you can leave the line, and again, the system fails. There are PLENTY of car washes around the metro area. Please find one, park, and THEN clean out your car.
Thank you for attending Lesson One on Drive Thru Etiquette. I, the drive thru master, will bring you further lessons as we progress into springtime; when drive-thru’s become notoriously clogged by uninitiated drivers who, in a spontaneous moment, decide they want to get some food to go and eat it in the park. Fear not, though, I am here to help guide you through how to PROPERLY place an order and keep the line moving.
Ok I feel better getting that off my chest.
(See? the terratalking you’ve come to love and enjoy is still here….buried under medical minutiae. It will soon emerge full force again!)
Ok back to my attempt at closing out this post – I hope you all have a wonderful weekend.
Peace out – and keep the hope.