Friday, April 4, 2014
Wednesday, April 2, 2014
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.
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.
Tuesday, April 1, 2014
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
Posted by KnockKnocking at 12:41 PM