Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Saturday, January 10, 2015


When we got home from the store this morning, I was getting the kids out of the van.  I needed to get the groceries upstairs and get ready for a few students I had coming for lessons.  The kids got out, I got Meagan, and I pushed the buttons to slide our van doors closed.  The left door slid closed and latched.  The right door started to and then I heard a big noise....and within just a few seconds I noticed our sliding door was no more - it was literally hanging off of our van by a wire.  Seriously?? My first thought was disbelief - did that really just happen?  I had just been talking to my husband about how we were finally almost finished paying off the van and could breathe a little bit with car payments at least... with the van pushing 180,000 miles, I had voiced how nice it would be to be payment free for a little while and then hopefully trade it in for a newer used van later this year.....  Oops.  I supposed I should keep my mouth shut from now on.

It's funny how something literally coming unhinged can make me think how unhinged our own life has been over the last month.  There has been quite a lot (especially emotionally and financially) going on! But the events of this last week have me on cloud 9.  Meagan has been bouncing back wonderfully.  Her speech has slowly but surely been returning and we have had no issues with her incision this time (thankfully.)  She has been thriving back at school - proud of her new Frozen back pack and enjoying the time with her friends.  She had great OT and PT sessions this week - Meagan chose "table wiper" as her job on the chore chart, so the therapists were able to come work with her and help her complete her jobs in the classroom.  The only time Meagan cried was in the mornings going to the bus - but it had nothing to do with the bus.  What was wrong? Meagan had to wear a hat to school.  It was below freezing out so I had to put hats on her.  Meagan hates hats.  She has always disliked things on her head, (and I can't say I blame her), but she really needed the hats.  I decided this was one sensory thing we had to tackle and sooner than later since colder temperatures were in the forecast.  When she came home from school, I left our hat/gloves basket out in the hallway in hopes Meagan would play with them at her leisure and would find one she liked.  Sure enough within a day or so, I heard a bunch of noise in the hallway as I washed dishes in the kitchen.  I sneaked into the hallway to see and there she was - having torn the whole basket apart and she even had a hat on her head.  A Browns hat too! (Daddy would have been proud.)  So we will see what next week brings and if we have a little better luck with wearing hats onto the bus.

Loving her new backpack

Hats are fun now... right!?

Ready to wear her new little ghillies to her sisters' dance class!

Meagan also had a neurology follow up on Thursday morning.  I giggled as we waited in the waiting room - she insisted on looking at a "book" but all they had was a basket of grown up magazines.  Still, Meagan was adamant about holding one, so I grabbed one for her - as she sat there flipping through the pages I was just enamored with how "grown up" she suddenly looked.  We looked through the pages of ads and pictures before she was called back.  She seemed especially interested in the Rolex ad page (perhaps an influence of Uncle Brad?) When we got back to the exam room,  Dr. F couldn't have been more pleased.  He was shocked how happy she was so soon off a hospital stay and was very proud of all her progress over the last year.  Meagan was very compliant and did a great job at her check up.  She even gave him a fist bump on the way out.  She's come a long way from screaming through every doctor appointment.

Loving the Rolex ad... she better get a good job!

We of course got Meagan back to her usual therapy regimen at home as well.  Mrs. M started to come back for regular appointments and get Meagan back on track.  We have a lot of news to report! As you remember, before Christmas Meagan was finally getting comfortable with her walker.  She wasn't afraid of it anymore and would actually let us help her stand with it.  Mrs. M was happy with Meagan's progress so she said Meagan is ready for her next set of AFO's ! She wants her to have some custom made so she gets a little articulation in her ankles if possible.  She originally thought she could move her to SMO's (support only from the ankle down), but after examining Meagan, Mrs. M realized Meagan's lower legs and knees are still extremely weak and wobbly - so still needing the AFO's but hopefully strong enough to start getting some movement through her ankles.  I'm really excited for his because as her AFO's are now, she cannot move any of those joints so I will be interested to see what Meagan thinks of her new braces!   

After Mrs. M finished with Meagan, we had a few new goals.  First is to get Meagan's new AFO's ordered.  Second is to work on independent standing with Meagan - she wants her to get less relaiant on "leaning" and work more on building her core balance to hold her body up on her own.  Third was to get up on her walker on her own and stabilize.  Within a few minutes of Mrs. M leaving, Meagan was just sitting there staring at her walker.  I looked at her and asked "Meagan, do you want to stand up on your walker? Do you want to show me?"  She suddenly scooted towards the walker and sat in front of it.  She stared at it for about five minutes and then put her hands up on to the handles.  I grabbed my phone because it looked like she was going to pull up! The wheels don't have locks, however, so I had to keep one hand on the walker while holding the phone with the other.  What I saw next was pure bliss - Meagan reached and struggled and within a few short moments pulled her little body up on to her walker! She looked unsure for a moment so I reminded her to "look for the red" (which refers to her walker handles) ..... as she processed the instructions and moved her hands about to stabilize, I was shocked! She had just pulled herself up onto her walker for the first time.  The joy in her face at the end was the only validation needed - she was pretty proud of herself.  And rightfully so.  

With all we have gone through in the last month, (Dudley's diagnosis, close family member's diagnosis, Meagan's hospital stays and scares, etc...) what happened with the van this morning seems almost like icing on the cake.  I actually did cry about it.  But then I laughed.  And laughed some more.  I'm finding life has a lot of moments like that.  Crying and laughing seem to come together sometimes.  But I think that's by design.  As I sit here on this Saturday, I think how just two weeks ago I was sitting on Meagan's hospital bed holding her....leaning over her seeing her lacking muscle control or speech, seeing her body freak out and not knowing how things would work out.  I remember that fear and uncertainty - and seeing her now having come through all that, I can laugh at the van door.  It's very inconvenient and certainly not what we need right now, but I can laugh at it. It's just a car.  I have learned the time I really need to cry.  And I have to say this week I have not had many reasons to do so.  

It's amazing how out of such a snowball of adversity we have been able to have such blessings of happiness paint our life.  The craziness of our last several weeks would be enough to let anyone become unhinged - but with so much to be thankful for, we refuse to go down that path.  Just as the door hangs by the wire, we cling to the hope that these joys are here for a reason.  They are the wire holding us to the body of hope that gets us through almost any challenge - as sad or funny as it may be.  I'm so excited to see what comes for Meagan over the next few months.  It's amazing watching her transition from a little toddler to a little girl - a very special little girl no doubt.

Meagan being her silly self reading Uncle Mike's book

Meagan loves her Mickey/Minnie Mouse number cards

Fascinated with pancakes

A small favor from Meagan - if you could please go to one of her favorite nurse's websites.. HERE .... and like their page it would be wonderful.  Nurse Jennifer was the one with Meagan through several of her stays, but most importantly, the nurse who was with us through Meagan's worst night yet.  Her quick actions helped us get the on call neurosurgeon there in a timely manner, and her attentiveness has no doubt helped Meagan get where she is today.  We would be grateful if you could stop by Nurse Jennifer's facebook page linked above and give it a "like"... and if you love really good popcorn, order some! It's the least we can do for all she helped us with over the last few years and especially two weeks ago.  Thank you!!

1 comment:

  1. you have an amazing little girl! just when everything goes bad she turns it all around.God is good all the time.you are great parents aslo!