Happy New Year!

 

You know a huge snow storm must be headed to the east coast if I'm on here writing another post hours after my last one.  There is no need to be alarmed, we are all well.  New Years Eve was much like any other night in our house.  One exception being little kids ate spaghetti for dinner while watching a movie and also that Jimmy stayed up with us to ring in the New Year.  We like our quiet little existence, I know it's not what most people like but it suites us just fine. 

 

Anyway, last night I had a hard time sleeping because this blog and how I planned to use it kept nagging at me.  I mean to share our journey through CF with everyone and I've been missing that lately.  Meaghan seems like most other newly six year olds on the outside.  Oh yeah, how could I fail to mention that last night.  Meaghan celebrated her 6th birthday last month.  It was a quiet, family only thing this year.  She wanted to have a camp out so we did the best we could for MD in December.  We put the tent in the living room in front of the fire.  A few people know that we are not a cake and ice cream celebration family.  We do brownies, cheese cake, donuts or anything the birthday boy or girl desires.  Meaghan wanted Hershey bars and marshmallows so that's what she got.  It was pretty cute on the cake stand all lit up with candles.  No toasting or graham crackers either, just chocolate and marshmallows.  What can I say, she knows what she likes.

 

Ok, now that's out of the way.  I'm going to tell you what's really been going on.  Meaghan is doing well, that is true.  If I may take us back a little while though, Dr. M told me in August that Meaghan wouldn't be starting kindergarten with her class and that was a kick to the chest.  Almost six years earlier we sat in his office and he told Jason and I she would go off to kindergarten with the "cure" in her pocket.  I got stuck there a while.  But, she's been home all this time and we've been doing great because of it.  Meaghan may not be out there making a class full of friends but she's also not catching every germ they bring with them.  I do what I think is best in the moment.  My whole reason for living is to raise the three gorgeous children God blessed me with to be adults.  For Meaghan, I have to keep her healthy enough to live to be an adult.  I'm not perfect and I'm not breaking my arm patting myself on the back but Meaghan is doing as well as she is today because of the way we take care of her.  I know this much too, Meaghan is happy. 

 

One other major development in our lives.  Beginning the end of October, Meaghan and I make almost weekly visits to The Kennedy Krieger Institute to meet with a behavioral psychologist.  Being a child with serious health concerns and sudden disruptions to her regular routine has left Meaghan with fear and anxiety that spread far beyond the walls of her hospital room.  Through the upcoming months of therapy we hope to uncover the deeper meanings, create a plan to help her cope and set her on a path for real success in navigating the CF journey on her own.  So far, Meaghan is enjoying getting o know the therapist and building her "bag of tricks". 

 

I am learning a lot from the time we spend at KKI too.   I do not always spend time with Meaghan and her therapist and that is really weird for me.  She's only 6! Meaghan doesn't seem to mind it like I do.  But, I put on my brave, everything's ok face and watch the door close behind her.  I have gained a lot of insight from my chats with our therapists and I accept that things have to change.  Even that they will probably get worse before they get better.  I use to think of my life as a CF mom as a ride on a roller coaster, I hate roller coaters and always have.  Lately, I realized that this is not so much like a roller coaster but a carousel ride.  Sometimes a really fast, jerky ride and others there's plenty of time to look around and soak up the lights and the music and laughter.  No matter what though, this ride has lots of ups and downs, I can't always see what's coming, I often still feel dizzy.  I think I'm going switch back to Meaghan Me Dizzy, it is the most fitting title to my life. 

 

Best of all, I understand what true joy is.  My life as Meaghan's mom has been a life like many others can not understand, thank the Lord for that.  It all started with the bliss I felt in learning I was going to have my second baby, the agony of hearing that that night she may not survive and then the relief I felt that she had.  The journey through all the events and emotions has brought me to the place I am today.  It is an ongoing process but I feel like I have finally found my joy.  While my circumstances have not changed, the life I know today can at any moment.  Today Meaghan reminded me of that.  Out of the blue, she started talking about what she might need "when" she goes back into the hospital.  She's not sick, there's no reason to talk about it but she really wanted to.  So she got out a pencil and piece of paper and started writing.  This is my reality.  Just an hour earlier we were painting our nails and playing with new toys, having a GREAT day.  Now I am flooded with emotions.  Does she know something I don't?  I am amazed whenever I am in her presence.