Friday, April 4, 2014

When A Bathroom Is Transformed Into A Washroom

Poor bathrooms.  I clump them into much the same category as hospitals; you don't really want to be in one but you find yourself in them quite frequently.  I find reason to celebrate whenever clever interior stylists find ways to re-purpose such a utilitarian space into something relaxing and even somewhere that you would actually prefer to spend time in.  I found a few glamorous spaces featuring a nice touch of wallpaper, tile and breadboard (sometimes all found in the same bathroom...can you imagine?) that makes me want to rip some old walls down and try my hand at tiling.  Beware of this reaction in your own soul lest you ruin your bathroom before sufficient practice.  May I suggest an unsuspecting neighbor?  Better yet, a kind of day camp for aspiring bathroom remodel DIYers.  I'd attend one of those.  xoxo Agnes

Wednesday, April 2, 2014

When You Get More Answers Than Questions

Almost everything has changed since we moved to Dallas when it comes to care of our littlest offspring.  Robert's medical supervision was excellent in Austin but what was lacking was the experience of a medical community who's boots on the ground/get your hands dirty knowledge had given them an edge in every day medical care.  Since we've moved here, we've had medical diagnosis after medical diagnosis.  For those who have gone through the ringer of medical diagnostics with a genetically compromised child this is very unusual in the end of a second year of life when the beginning of that life has been so difficult.  But what has always been unusual about our son was that diagnostics had made very little sense of his symptoms, which were numerous and dangerous.  And I now know what a blessing it is to find medical professionals who recognize his struggles and have a name for them.  Treating symptoms is a necessity, but it becomes a frustrating loop when the underlying cause remains enigmatic and doesn't quite fit the observable patterns. No longer.


We now know that Robert's brain has functional and formulation damage.  As this was explained to me, while I was pregnant with him, he formed in a manner that a specific part of his brain doesn't function as it should secondary to genetic illness.  The part of his brain that is compromised is called the hypothalamus. To have this happen in such a manner that still preserves intelligence is very unusual.  I was told that this was part of the reason that his diagnosis has been hard to pin down.  His case is one out of tens of thousands, maybe even hundreds.  Unfortunately, this area of the brain is the central hub for almost all autonomic function; those being functions of the body that we don't consciously think about like temperature regulation, kidney function, sleep cycles, hormones and overall brain chemistry.  The list goes on and on.


 I have a vague memory of taking Robert's hand and leaving that meeting.  It had been a three hour in-depth discussion with lots of papers, test results and kindness.  But I cried for almost three days straight afterwards. What do you say?  There isn't anything to say, really.  You feel a little flushed, a little sick.  Kind of like how you feel after a bad bout of food poisoning.  A little bleary, a little faint.  You try not to think back and remember the trauma and you try not to look forward.  You look at your shoes and you look at your hands and you look at your baby and you just feel it.  And you practice your yoga breathing and you try to look everyone in the face and smile and you just won't let yourself ask why.  And you try not to ask how it will work, or how it won't and what limitations there will or won't be.  It's an odd time.  Everything feels so dramatic and overwhelming in your head but everything is just the same around you.  And in the stillness of the night your brain and heart start to process.  And you remember your grandmother telling you take it one day at a time, and you go in your children's room and you look at their little faces and feet and it's the reminder to your soul that life is here.  It's precious and nothing about it can be understood, anticipated or taken for granted.

It's one thing to know your child's brain isn't healthy and its another story to have understanding.  That little hypothalamus in such a sad state.  But it's been an enormous relief, honestly.  Gone are the doubts we had about the use of psychotropic drugs.  The questions about the exhaustive amount of therapies we have Robert in, the effects of so much medical intervention and seeking of treatment that permeates the function of our entire family, gone are the questions I have about all the surgeries, drugs and treatments.  We do it because we have to.  We always had to, we just didn't understand why and in retrospect, the urgency.  We've begun full treatment for narcolepsy.  We know he has Celiacs in addition to the struggles that accompany so much stomach surgery. We're testing bone density, we're looking at hormones, we're learning how to regulate temperature for him and we aren't lost in a sea of confusion as one system of the body after another struggles.  We know that little central hub is sending out mixed messages and we are ahead of the game because we know what the hypothalamus is in charge of.  We can anticipate difficulties for the first time in Robert's short but exponentially vast life.  Game changer.  We aren't waiting around for something else to go wrong.

We can stop searching for short term answers and focus on long term solutions.  Doors are opening up everywhere and Bobby will be starting school in a few short weeks. It's all really exiting and rewarding and best and biggest of all, hopeful.  What more can you ask of life?   xoxo Agnes

Tuesday, April 1, 2014

Things I Dream About

Working at Anthropologie.  Am I really qualified?  Hell if I know!  I like to think that as a creative who is always challenging myself to grow and who enjoys a multiplicities of mediums strongly represented in interior decor I pretend to myself I'd fit right in.  But what really draws me about this place is the amount of time and love that goes into creating an atmosphere for the browsing shoppers. I really want to be a part of that.  Anthropologie is really about an experience; an experience where every shopper enters their own adventure and creates a feel that is totally unique to their own soul.  I don't think there is another place out there that captures this moment quite like Anthro does.  When spare time and peace are hard to come by, I wander in there and always find some bliss; a reprieve from the difficulties and stress that we all live with and through, not just as parents to special needs children but as all who walk through this world.  I think my greatest inspiration is the challenge of the creativity.  So often the materials used in the store displays are simple and readily available but handled in such a manner that they take on new life.
Mary Brandenburg's  beautifully artful captures (she is amazingly talented) reminded me of what I love best about this store; it's mission to share delight in the details and the promise that everyone deserves a bit of beauty in their life.  I could go on and on, waxing (and waning) poetical, but y'all know I'm right.  You all do.   xoxo Agnes