Winter's beauty. Winter's sting.



Oh Winter.

How good you have been to me.  Wrapped up in the comfort of this home with my babe so tightly in my arms.  There will never be anything as truly sacred as these days in which I memorize her giggle and am fascinated by her newest feat--the simple task of opening her hands. 

 

She taps them on my chest, and sits up tall with her fragile body propped alongside mine.  She catches glimpses of something funny and laughs out loud (sometimes fake.)  When she is tired she turns, rests her head on my shoulder and begins the familiar tapping that brings me so much comfort.

 

As Abrian was reminded and pointed out to me, tapping is the very best my girl has to offer me.  That is the one thing she can do to show her love and affection and she gives it so freely.  So willingly.  Sometimes so aggressively.

And we all welcome and receive it because she is our girl.

Oh Winter, how you've exhausted me.

Being in this home with my children is brilliant and at the end of a hard day I can look back and truly say I wouldn't change it for the world.  But being confined to this place with them has left us no choice but to confront many of the emotional turmoil that they've been facing. 

 

Braden's weekly breakdown occurred yesterday.  He cried so hard that he trembled in my arms.  He doesn't like to be away from home because he worries about me and he worries about Mabel. 

"Who will take care of Mabel if something happens to mommy?"- a question his worried heart asked my mom, his Nanny, during the night he waited for all week-a sleepover for just him.  Her heart broke as she comforted him the way only a good Nanny would do.  I'm just not sure how to ease their fears and anxiety when it is all very valid.  So I held him and let him cry.

 

My hope is that at the end of this winter we will have peeled off the crusty muck buried in hearts and the hurt will fall away like a facial mask, leaving us refreshed, clean and smooth.  My hope is that winter will have delivered a much needed seclusion to dig deeply into the pain but that with spring we will awaken with a new perspective and a new hope.  

Mabel has had a pretty bad week.  We are back to more frequent crying and agitation.  I also received an all-too-familiar, discouraging phone call from our genetic counselor today.  Once again, research just hasn't caught up to the complexities that make up my girl. 

As always, I'm just taking one day at a time and counting them all as a blessing.  To wake up and have another day to love this little girl (and all of them) is the greatest gift I could ever be given. All I want to do is love them well, and teach them well and I know that the rest will fall into place.

 

Oh Winter, I love thee.

But I'm ready for you to go.   

Quickly.  Far away.  And for a long time.

 

Winter's sting and winter's beauty are both lasting, that's for sure.  I have welcomed them both but am ready, soon to say goodbye.