my griefcase...
there's thing i carry around twenty four hours a day, seven days a week. i have had it for awhile now and some days it's just there, like an extension of me and i carry on. other days, it's dragging behind me, ever so burdening in it's heaviness. some days, like today it makes my heart stop. that weight pressing down on my mommy heart as i watch his color change before my eyes.
it's my "griefcase".
i have to sit on it to get it to even close. it's so stuffed with old tears, worry and fear that the zipper has ripped on one side and that fear hangs out like the stuffing in my golden retrievers toy. i've tried to unpack that damn thing, but you can't unpack when you haven't reached your final destination... we are still traveling this journey. some days my griefcase gets lost in transit and i move along, but most days she's right behind me that ole' ball and chain never far behind. i can fake it til i make it, but behind the smile, every cell in my body is lined with worry. i am sensing something is up with paxton. i don't know what... i can't name it or place it, but i am all funkadoo about him. i was getting ready to take a shower tonight and i took my hair down and noticed more grays than are acceptable for a 33 year old only 3 weeks post color. i stopped for a moment to wonder what this secret stress i harbor is doing to my body. i guess it's not really a secret per se, but there isn't a day that goes by that i don't wonder to much, second guess this or panic about that. behind whatever i put forth, lies that. i want to unpack so bad, but there is no final destination for us. yes we made it through his three surgeries, because he is a rock star like that...but he still has half a heart. he still has a feeding tube. he lives on antibiotics perpetually because he can't fight anything off and we have to nip it in the bud before it becomes full blown. he still turns blue. he still breathes hard. i hate it. HATE. IT. he wants to be normal and i let him, but all i can do while he's playing with other kids on the playground is mentally freak about the germs surrounding him because he can't fight things off like other kids can. what am i supposed to do though...keep him in a bubble...i can't possibly and when i see the joy he gets from others i know that is not an option. however long we have him i want him to be happy. if there is one thing i don't doubt in all of this, it is that he is happy....
logically i know there is nothing i can do to change or alter paxtons outcome. i get this... i really do... so i try to live. you know, like he does. happy. i worry, goddamn do i worry, but he's here now and i try to revel in that. special needs parents live polar opposite extremes, least I think so anyway... with such profound, soak up every moment gratitude and fear so thick it will suck the breath out of you. it's one hell of a way to live, but it's the only way. so i keep stuffing more in my griefcase and standing on it to get her shut and she's ripped and worn, much like pax and i are. it's life right. we all have that griefcase we carry around, the one that is so heavy yet kinda feels like home too because we don't remember life before it...
i don't remember life before mine...i started packing that motha the day my first son was born. little did i know then all that i would be stuffing it with. it's a beautiful journey though. each item, moment and tear placed is like a medal of honor. my case of battle wounds, tears and victories.
which led me to let go of the need to unpack. this is an open ended flight and open ended is ok... who knows where you might end up...could be better than any planned destination you ever dreamt of...so far, no words ring more true.
i don't know where i'm going, but i damn sure know where i've been...
love and hugs
~j
it's my "griefcase".
i have to sit on it to get it to even close. it's so stuffed with old tears, worry and fear that the zipper has ripped on one side and that fear hangs out like the stuffing in my golden retrievers toy. i've tried to unpack that damn thing, but you can't unpack when you haven't reached your final destination... we are still traveling this journey. some days my griefcase gets lost in transit and i move along, but most days she's right behind me that ole' ball and chain never far behind. i can fake it til i make it, but behind the smile, every cell in my body is lined with worry. i am sensing something is up with paxton. i don't know what... i can't name it or place it, but i am all funkadoo about him. i was getting ready to take a shower tonight and i took my hair down and noticed more grays than are acceptable for a 33 year old only 3 weeks post color. i stopped for a moment to wonder what this secret stress i harbor is doing to my body. i guess it's not really a secret per se, but there isn't a day that goes by that i don't wonder to much, second guess this or panic about that. behind whatever i put forth, lies that. i want to unpack so bad, but there is no final destination for us. yes we made it through his three surgeries, because he is a rock star like that...but he still has half a heart. he still has a feeding tube. he lives on antibiotics perpetually because he can't fight anything off and we have to nip it in the bud before it becomes full blown. he still turns blue. he still breathes hard. i hate it. HATE. IT. he wants to be normal and i let him, but all i can do while he's playing with other kids on the playground is mentally freak about the germs surrounding him because he can't fight things off like other kids can. what am i supposed to do though...keep him in a bubble...i can't possibly and when i see the joy he gets from others i know that is not an option. however long we have him i want him to be happy. if there is one thing i don't doubt in all of this, it is that he is happy....
logically i know there is nothing i can do to change or alter paxtons outcome. i get this... i really do... so i try to live. you know, like he does. happy. i worry, goddamn do i worry, but he's here now and i try to revel in that. special needs parents live polar opposite extremes, least I think so anyway... with such profound, soak up every moment gratitude and fear so thick it will suck the breath out of you. it's one hell of a way to live, but it's the only way. so i keep stuffing more in my griefcase and standing on it to get her shut and she's ripped and worn, much like pax and i are. it's life right. we all have that griefcase we carry around, the one that is so heavy yet kinda feels like home too because we don't remember life before it...
i don't remember life before mine...i started packing that motha the day my first son was born. little did i know then all that i would be stuffing it with. it's a beautiful journey though. each item, moment and tear placed is like a medal of honor. my case of battle wounds, tears and victories.
which led me to let go of the need to unpack. this is an open ended flight and open ended is ok... who knows where you might end up...could be better than any planned destination you ever dreamt of...so far, no words ring more true.
i don't know where i'm going, but i damn sure know where i've been...
love and hugs
~j
Comments
I have often thought that the stress of having an ongoing situation like yours is actually harder to live with than coping with the sudden death of someone. If you would allow I would like to read your story as part of our workshop. My daughter in law has started a facebook page called New Beginnings Eco Retreat. and my website is instinctivehealth.co.nz