Mother's Day 2019

Murphy's 15th birthday was yesterday.  Today is Mother's Day.  I remember everything about having him.  He was such an incredible joy.  Everything about him was relatively easy, even though he came into this world five weeks early, when we were completely unprepared.  We had just started our bathroom renovation and we had no working toilet, sink or shower when I had him.  But, it was fine.  We figured it out and we enjoyed almost everything about him.  The night terrors weren't fun, but really he was such an easy baby and kid.  Still is, really.  Well, except for that pesky traumatic brain injury...

Then, two and a half years later, we had Harlie.  I remember Mother's Day when we were expecting her.  It was 13 years ago and we knew something was wrong with her lungs.  That is when we started to fear, grieve and hope.  Everything changed about Motherhood for me.

As a mother, I have had to do things, experience things, no mother should.  I've had to learn things, understand how normal things work, then learn how Harlie works.  I had to become an expert in Harlie's congenital heart disease, lung disease, Goldenhar Syndrome, spinal issues, feeding issues, airway management, equipment at the hospital, equipment at home, monitors and when to listen and when to ignore all the beeps.  ALL THE #@$*!$ BEEPS.  And, I've had to learn, and accept that her life is dependent on me knowing when things are going bad, when she needs more help than I can give, when to take her to the hospital or when I can keep her home.

I've spent countless days and nights by her hospital bed, in the intensive care unit.  I have watched her struggle to BREATHE.  I know my way around four different children's hospitals.  Her nurses have become my friends.  They were the constants during long hospital stays.  I've watched a nurse hit the code button beside her bed, heard the alarms and the footsteps of all the people running to her aid.  And I have had to miss the boys, their life and being their mother while I was with Harlie.  I have had to miss my husband and being a wife to him.  I have had to miss taking care of my family while I was taking care of Harlie.

I have slept beside a baby monitor for 15 years now.  Having a trach greatly limits her volume, especially at night.  And her equipment running makes it hard to hear her alarms, requiring the use of a baby monitor.  More nights than not, our sleep is interrupted by Harlie's needs.  This sleep deprivation usually ends relatively quickly for most moms.  For me, it has lasted for 15 consistent years - and counting.

Every day it takes energy to bury all the trauma, horrible memories and losses deep down, so all the good can float to the surface.

Today is Mother's Day and I am choosing to think about how incredibly good and awesome my life is.  It really is extraordinary if you think about it.

I have an incredible mother, who taught me how to be the mother I am.  Our life wasn't easy growing up, but we had a good life, full of good times and good memories.  I am a better mother than I am a daughter and I hope my Mom believes  knows that is a testament to her.  :-)

I have an incredible husband who has never backed away from a scary moment or hard time.  He has stood beside me, often having to hold me up.  He has supported our family in every way and has put my needs above his, more times than I can count.  He has held the fort down and has made our lives fun and exciting despite our many limitations.  I can't possibly put into words how great I think this man is and how lucky I am to call him ours.

I have three incredible children.  They have learned how to deal with this unstable life.  They have had to learn to be happy with less.  Less stuff, less activities, less money, less vacations, less freedom, less mom-time. Often, Harlie and I have left the house - not having any idea when we would return.  Sometimes, Tom and I have been so afraid we would not be able to bring her home.  These three kiddos are resourceful, grateful and roll with the punches like nobody else.

I am grateful for the things most moms have the freedom to take for granted.  I am proud of the things that most moms don't even have to think about.  And I am proud of myself.  Every day I carry baggage full of worries, fears, grief, memories, skills, tasks, etc., that no one else can see.

But, I am so grateful for this life.  I certainly wish it were easier and better for Harlie.  But, I know we have done the best we can for her - despite all the obstacles.  We still have her. We can still hold her.  We can still comfort her.  We are still laughing with her.

Thank you Murphy, Harlie and Cooper for giving me this extraordinary Motherhood.  Each of you brings your own uniqueness and endless love to this incredible life of mine and I am so grateful for each of you.  I will love and give all I can for the rest of my life.

All my love,
Christy xo