Saturday, August 31, 2013

some things never change.

There is always comfort in the things that never seem to change.  For instance, the smell of coffee in the mornings fills my kitchen with it's sweet aroma and I somehow feel like because I have drank coffee every day for several years and have survived the hardest days of my life, I can conquer anything. 
This week was a little 'off' for me. 
The kids are enjoying school and we are falling into a good routine of getting them there, keeping them there and enjoying home when we're all back again.  But in the days where my focus was able to be quieted and my mind was able to be still, I felt the pull of confusion and emotions that I maybe haven't taken the time to feel quite yet.  Or maybe it's just that I'm never going to ever feel quite 'normal' or what was once normal again.  I suppose when your entire idea of life gets turned upside down there will always be a bit of conflicting ideas that surround your every move, your every decision. 
I'm so proud of the kids.  They have been rockstars the last two weeks.  They wake up, eat breakfast, brush their teeth, get dressed and out the door with little argument.  They are doing great at school and seem excited.  They talk to me when things are upsetting them and although it's not always an accurate description of the truth surrounding our circumstances, I always validate what they're feeling because they deserve to experience all of this however they do.  It is their story, after all, and I was told this week that one day they will be proud to tell it. 
I can only hope that is true.
Braden, in his innocence, or maybe just his phenomenal ability to cope, has moved along quite well in the last several months.  He understands a lot of what has happened with his dad and I and he approaches it head on.  He wants the truth and then he faces it, accepts it and moves forward.  As always, he reminds me so much of me that it's scary.  And yet in those moments, I am so thankful because he is strong, practical and able.  These will be amazing traits to have as he grows and faces this tricky life. 

Nora is adjusting really well to school.  She is making friends and seems excited to tell me funny stories about her classroom.  She is love with her teacher and loves taking her sack lunch each day.  She and I still have the hardest time day after day.  It seems we are always fighting over something.  I used to think it was because she was a lot like me and that we were just always going to butt heads but lately I feel like it's exactly the opposite.  Rather than deal with things, even though there are alot of us trying to help her do so, she seems to still wrestle with denial- a sure coping mechanism.  I refuse to take that away from her, as I think that it's keeping her heart safe for now, but in the mean time I try gently to be honest with her and patient.  These days are fragile anyway and while we are experiencing so much change I am simply desperate for her to just be ok in it all.  She is everything to me and my heart breaks knowing that hers has. 
My heart literally aches knowing that everything I have always done to keep these children little was ripped away in the midst of one person's decisions.  Choices that affected all of us without anybody else getting a say.  That is a very helpless and terrifying feeling knowing there is little to no control over your own life or the lives of your precious children. 
Mabel is doing well, considering. 
She has started vomiting again, a little more frequently and last night I noticed a cluster of new seizures.  She seems to be responding really well to her night meds lately and gets extremely happy a little after they kick in, which we are all enjoying.  I haven't heard her giggle so much in a very long time.  She and I are still spending the majority of our days walking through town or driving.  As always, she still loves the movement.  She looks frail but as time moves on and she grows older, and longer, I suppose it's inevitable.  She is extremely floppy and seems agitated when we try to prop her in a position other than laying.  Even putting her in her wheelchair seems uncomfortable and frustrating for her, so I try to limit my need for it. 
I can't help but feel helpless knowing that we are moving into the fall and winter months.  My mind is doing weird things, thinking thoughts like:
"isn't it strange that you will have had a child that never speaks a word..."
"isn't it odd that your child doesn't even eat food?"
Those things don't ever go away.  It's still shocking and I still find myself perplexed that this is my reality.  She is mine and this is our beautiful life but sometimes it's easier to go through the motions of living it than it is to actually think about it.  I suppose that, too, is a coping mechanism and I'm sure other 'dragon moms' could relate.
I'm getting anxious for fall.  For crisp, fresh, air.  For the chance to feel the kind of passion and excitement that I always feel when that distinct wind blows through.  I'm anxious for my heart to be swept up in friends and life and to allow myself to feel things again that I haven't in a very long time.  The newness of the upcoming season, although probably painful, will also be rewarding and refreshing. 
Some other things that never seem to change:
Indian Summer [it's been 98 degrees or hotter every day this week.]
Braden's noises.  His constant, unending noises.
The cold comfort of my favorite quilt.
My village.  My sweet, strong village.
My love for all things orange & yellow, pumpkin & spice.
And my ability to love.  Love, love, love.  It still surprises me that I'm capable and yet--
it doesn't.
Happy days ahead, friends. 

No comments: