Good Morning, Sunshine!



Morning Meds (some of them)

Right away I have to offer my apologies.  I should have updated this much earlier.  So many things, all good, have happened since my last post.  The pictures are most of the steps it takes to get Meaghan ready for school each day.  I am super proud of the way that she has handled everything.  Today is just her 3rd full day of school, because of Spring Break falling right after her introduction.  I wake her at 6am to start everything that has to be done to maintain the level of health we've achieved so far.  That gives us plenty of time for what has to be done and a cushion for the tantrum or meltdown that may or may not happen.  On day one it was the very large chewable vitamin that Meaghan has to take each morning.  It's a new flavor, orange, and one might think that that's not so bad.  But Meaghan has been chewing up the berry flavor as long as she can remember so the orange causes her to gag, repeatedly.  The first day after Spring Break there was no tantrum so we spent some extra time reading about the birds in our backyard.  Today she wanted to finish building a Lego set and so we spent a little time on that.  I texted Jason this morning and told him not to quote me, so I'm getting myself into trouble here but, "I am so happy right now I can hardly stand it".  We've come so far in the past 6 months.  I'm more in control, Meaghan's more in control and we're starting to live, truly live now.  It's work, sometimes really hard work to be us and we have a long way to go still.  What's amazing is that the harder we work at this life the easier it is getting.  

I don't like orange
 

First Day outfit (but you can't
make me smile)

Checking things off

 

Morning Vest

The ride to Jimmy's school

 

With that I am going to end this post because I want to get on to the rest of the past two weeks.  Again, I am sorry to have left you waiting to find out how school has been going.  It has been so much better than we expected.  Meaghan accelerated the plan (A LOT) but as a whole we decided that Meaghan should be the one to lead us.  What a remarkable little girl!  

 

Sweet dreams, angel

Feeling Funny

 

We're acting a little silly here because there are big things about to happen for us.  Meaghan is going to start school tomorrow.  No exclamation point from me, my fear and anxiety overshadow my excitement.  Her first day will be a short introduction to her classmates and teachers.  For a few weeks we will be building up Meaghan's time at school before she will attend a full day or week.  But I have a feeling Meaghan will be ready to speed up our plan in no time.  We have talked a lot about what to expect.  The anticipation of it all has had an up and down effect on both of us.

 

We have been working for a couple of weeks on creating a plan and a schedule that makes the lengthy list of daily requirements more manageable.  It starts by having to go to bed earlier so that I can wake Meaghan at 6am to start her morning treatment and therapy.  It doesn't sound like much but Meaghan has never liked the morning portion of her care, and we weren't on a clock then.  I'm building a little more time than we need into the schedule so that I can keep my cool better when I meet Meaghan's resistance head on.  Please, Lord help me, I need a calm, gentle touch in the midst of my own struggle with doing what I am so afraid of. 

 

I know that all parents are nervous when they send their kids off to school.  I did that once or twice already, Jimmy is now in middle school!  What complicates tomorrow for me is that I have kept Meaghan at home during the past 7 months because she was too sick and weak to start school with her peers.  I made great changes to my family's lives to help minimize the risk of exposing all of us to germs Meaghan couldn't fight.  Then, I surrendered control over what I can not control and prayed.  Today, Meaghan is STRONG and healthier than she's been in 2 years!!!  Praise God.  I know better now than ever, she is in His hands.  He LOVES her and will see that she fulfills His purpose for her.  My job is just to manage and listen.  The right people are strategically placed in our lives to see that I stay on course.

 

Meaghan's fight is not over, not even close.  There is no cure still for the terrible disease that threatens to end her life and makes every breath she breathes more difficult and meaningful than I can find the words to express.  If you would like to help, you can click the link on the right.  Once there you can donate to the Cystic Fibrosis Foundation in Meaghan's honor or join us in our mission.

 

Thank you to all, you know who you are.  Do not underestimate your influence on our lives, each one of you who listens, encourages and supports us is firmly locked in my heart forever. 

 

Hugs!