Happy Valentine's Day from the Murphys!
So much love from us to you.
{photo credit to Jenn Hopkins Photography}
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our kid's on the move!
i wanted to share something a little different today. i'm going to plug a local "business" after a phenomenal experience benjamin and i had on monday.
a few months back, ben started physical therapy. it's amazing what a little bit of misalignment can do. ben, as a result of his metabolic condition ("X-linked hypophosphatemia), has bowed legs. his bowing is pretty much localized to his ankles but he has adapted a variety of ways that he tries to correct for this relative instability. we hoped that physical therapy would be a way to help him stretch and strengthen ~ and to, with time, help correct some of these bad habits. with time and the medicine he takes, his bones will straighten and we wanted to supplement that with physical therapy.
we started out at standard UF based clinic. the therapist was nice enough but visit after visit, would spend nearly the entirety of the session commenting on just how rare ben's condition was and how she had never med a child with the same problem. she identified a couple of fairly obvious issues for us to work on with some home exercises but beyond that, with all due respect, really wasn't that helpful. as i said, all of the attention was paid on this rare condition that he has rather than trying to dissect apart the small physical issues that we can actually address in therapy. we grew frustrated with time ~ i got sick of hearing how rare his condition is (i know.) and even more sick of hearing how she didn't know how to help him (then why are we here?). we let PT slide as it soon became something pretty useless in our mission to help our son.
a few weeks ago, two separate people who are very dear to my heart (my brother Andrew who is finishing PT school here at UF and my best friend Elisa who is also a PT by trade and recently got her Ph.D. in Rehab Science) mentioned the name of a woman, Claudia Senesac. Dr. Senesac is an impressively trained pediatric physical therapist who, among the lengthy myriad of accolades on her CV, is well known for running a local program called "Kids on the Move". they suggested i contacted her with the idea that she might be able to think outside the box a little with ben.
in a very rare moment of using the "doctor card", i emailed her explaining who i was and the situation we were in. i asked if she would be willing to see ben and give us her thoughts. less than a week later we had our first appointment at KOTM. housed in an old early 1900s home in NW Gainesville, this was so different than the sterile clinical environment of our previous PT appointments. as we entered the renovated space from the back, i was struck by the authenticity of the space. to the right as you enter the small quaint house, is a great room, decorated in a beautiful jungle mural with all of the toys, contraptions, and therapy equipment encorporated into the design. windows fill the walls and natural light bathes the entire space.
ben took to "ms. claudia" right away. she addressed him rather than focusing on me which had irritated me with our previoustherapist. they quickly bonded and it was clear that she has spent a lifetime working with children. that first visit she watched him very intently, offering him toys in what seemed like simple playtime but in actuality was a very astute study of his entire body and its alignment. we undressed him to his pull-up and she picked him apart from his head to his toes. the things she picked up on in that visit blew me away. she quickly commented on his tight hip flexors and poor core strength, the things that the other therapist had focused on for weeks, as if they were minor in comparison to all the other little opportunities we had to help make improvements.
this week, ben and i returned to "claudias house". he excitedly ran up the ramp towards the entrance and barreled inside asking "is it my turn?". ms. claudia greeted us and we quickly got to work. what happened in that 45 minute session is something i would not believe if i hadn't watched it happen. she offered ben a shallow bin of small toys and with my permission began to stretch him. a massage with purpose! with the toys as a distraction she spent nearly an hour working on his rolled ankles, strongly caressing his alignment back into place. she worked on ligaments and muscles in his legs and hips. we distracted him with toys and conversation and she would occasionally catch my glance with wide eyes and mouth to me, "martina, he is AMAZING". he didn't fight once and at one point, he even laid back....put his head in my lap and smiled. he was enjoying it!
claudia later told me that she worked on him very aggressively and that she was absolutely astounded by his ability to sit still and let her do all that she had done. i took this to mean that it's doing him good....all that stretching and re-aligning probably feels so good to him. when he stood up from our session that day, his legs were NOTICEABLY straighter and his gait had changed entirely. for those of you who don't understand what PT is all about....i can tell you i watched it's value unfold before my eyes. he didn't waddle out of "claudias house" that day....he walked more comfortably and with a straightness he has not known before.
meeting this woman and hooking up with KOTM has been a godsend in our house. KOTM is well known in the community for working with children with autism and other developmental delay. ben doesn't have autism so i can't speak to the specific therapies that they offer but i can say that i have heard amazing things. and after the brief experience we have had with dr. senesac, i imagine that they are all true.
here's to keeping our kid on the move....judging by our complete inability to keep him still for family valentine's photos last weekend....i think we are totally on the right track!
a few months back, ben started physical therapy. it's amazing what a little bit of misalignment can do. ben, as a result of his metabolic condition ("X-linked hypophosphatemia), has bowed legs. his bowing is pretty much localized to his ankles but he has adapted a variety of ways that he tries to correct for this relative instability. we hoped that physical therapy would be a way to help him stretch and strengthen ~ and to, with time, help correct some of these bad habits. with time and the medicine he takes, his bones will straighten and we wanted to supplement that with physical therapy.
we started out at standard UF based clinic. the therapist was nice enough but visit after visit, would spend nearly the entirety of the session commenting on just how rare ben's condition was and how she had never med a child with the same problem. she identified a couple of fairly obvious issues for us to work on with some home exercises but beyond that, with all due respect, really wasn't that helpful. as i said, all of the attention was paid on this rare condition that he has rather than trying to dissect apart the small physical issues that we can actually address in therapy. we grew frustrated with time ~ i got sick of hearing how rare his condition is (i know.) and even more sick of hearing how she didn't know how to help him (then why are we here?). we let PT slide as it soon became something pretty useless in our mission to help our son.
a few weeks ago, two separate people who are very dear to my heart (my brother Andrew who is finishing PT school here at UF and my best friend Elisa who is also a PT by trade and recently got her Ph.D. in Rehab Science) mentioned the name of a woman, Claudia Senesac. Dr. Senesac is an impressively trained pediatric physical therapist who, among the lengthy myriad of accolades on her CV, is well known for running a local program called "Kids on the Move". they suggested i contacted her with the idea that she might be able to think outside the box a little with ben.
in a very rare moment of using the "doctor card", i emailed her explaining who i was and the situation we were in. i asked if she would be willing to see ben and give us her thoughts. less than a week later we had our first appointment at KOTM. housed in an old early 1900s home in NW Gainesville, this was so different than the sterile clinical environment of our previous PT appointments. as we entered the renovated space from the back, i was struck by the authenticity of the space. to the right as you enter the small quaint house, is a great room, decorated in a beautiful jungle mural with all of the toys, contraptions, and therapy equipment encorporated into the design. windows fill the walls and natural light bathes the entire space.
ben took to "ms. claudia" right away. she addressed him rather than focusing on me which had irritated me with our previoustherapist. they quickly bonded and it was clear that she has spent a lifetime working with children. that first visit she watched him very intently, offering him toys in what seemed like simple playtime but in actuality was a very astute study of his entire body and its alignment. we undressed him to his pull-up and she picked him apart from his head to his toes. the things she picked up on in that visit blew me away. she quickly commented on his tight hip flexors and poor core strength, the things that the other therapist had focused on for weeks, as if they were minor in comparison to all the other little opportunities we had to help make improvements.
this week, ben and i returned to "claudias house". he excitedly ran up the ramp towards the entrance and barreled inside asking "is it my turn?". ms. claudia greeted us and we quickly got to work. what happened in that 45 minute session is something i would not believe if i hadn't watched it happen. she offered ben a shallow bin of small toys and with my permission began to stretch him. a massage with purpose! with the toys as a distraction she spent nearly an hour working on his rolled ankles, strongly caressing his alignment back into place. she worked on ligaments and muscles in his legs and hips. we distracted him with toys and conversation and she would occasionally catch my glance with wide eyes and mouth to me, "martina, he is AMAZING". he didn't fight once and at one point, he even laid back....put his head in my lap and smiled. he was enjoying it!
claudia later told me that she worked on him very aggressively and that she was absolutely astounded by his ability to sit still and let her do all that she had done. i took this to mean that it's doing him good....all that stretching and re-aligning probably feels so good to him. when he stood up from our session that day, his legs were NOTICEABLY straighter and his gait had changed entirely. for those of you who don't understand what PT is all about....i can tell you i watched it's value unfold before my eyes. he didn't waddle out of "claudias house" that day....he walked more comfortably and with a straightness he has not known before.
meeting this woman and hooking up with KOTM has been a godsend in our house. KOTM is well known in the community for working with children with autism and other developmental delay. ben doesn't have autism so i can't speak to the specific therapies that they offer but i can say that i have heard amazing things. and after the brief experience we have had with dr. senesac, i imagine that they are all true.
here's to keeping our kid on the move....judging by our complete inability to keep him still for family valentine's photos last weekend....i think we are totally on the right track!
the harshest truth
we walked side by side through the chirping alarms
and bright flourescent lights. toward a task that neither one of us was looking forward to. a
task that often comes with our territory, but never gets any easier.
seeing the look on a mother’s face when you tell her that her son is
going to die should never ever be something that comes easy. (there is a
special place in hell reserved for those who find it so). and this time was no
different.
my friend and i, co-fellows in our
hematology/oncology program, went together. because we had both been
called to help. but mostly because, deep down, we sensed we’d need one
another. that this time would, somehow,
be more difficult than all the rest. we traveled the halls of the intensive care
unit to talk with the family of a man who will likely die in the next 48 hours
at the hands of a fatal medication error. a chemotherapy-related
medication error that occurred at another hospital but was so severe and rare
that he was transferred to be under our specialized care. an
error so tragic in its ability to have been prevented that it burns in my
throat and takes my breath away. an exquisitly painful reminder of how
much responsibility we hold in our hands.
we are each well versed in having the
difficult conversations that our professions often calls upon us to have. we've had more than either one of us care to count. these
conversations are never easy, but i have found that they are always meaningful.
sometimes we witness the beauty of a family brought together or a last wish
fulfilled.
i admit that today, in this moment, i am struggling deeply with the meaning in why this happened. i have faith that it is buried
deep in there somewhere and we are all left to try and find it.
i will never forget the look in his mother's steel
blue eyes when we told her the truth. the truth that no one had wanted to
say before. there was talk of damage reversal and options and palliation
of pain (all very good things) but not the hard, undeniable horrific truth.
we went together, my friend and me. both
mothers. both mothers to sons, in fact.
we bore witness to the piercing agony as the steel blue turned grey. the matriarch, clearly a strong determined woman, seemed to vanish with the
news. she motioned for a drink of water and frantically reached for her
purse....fumbling for a pill bottle of anxiety mediation. her children,
understanding the harsh truth more readily than she, quickly surrounded her, physically supporting
her as a single lonely tear crept slowly down her face. that moment will stay with us forever.
i will never know this man but based on the stories
they told of him, i know he was a man of character. a man with a
beautiful spirit. they say he was a man who liked to work on cars in
between chemo cycles, something that came as no surprise as i held his tanned calloused hand in mine. he was stubborn and determined not to let his cancer
beat him down. he was so proud, they say, as he came to clinic to get
what would have been his next to last treatment. his last words were
"i don't want anyone to get in trouble" as he talked about the
medical staff he knew had made a grave mistake.
i don’t know why this happened but i am glad we met
this man. only if to say goodbye. i am touched by his grace and for now, that is all the meaning i can muster.
2014 : simple living
happy happy 2014!
i resolve to be here more. to bring my thoughts, our stories, my authentic self. writing brings me such joy and brings with it a sense of therapeutic relief. it's fun, it's difficult, but most of all it is something that i really really enjoy (for a variety of very different reasons). and i've put it off for the past few months because, well, "there just aren't enough hours in the day." but as i continue to remind myself....we make time for the the things, the people, the experiences that are important. easier said than done, i know....but worthy of striving for nonetheless.
the end of the year, as i'm sure is true in most homes, flew by in a flash. but i will say with absolute certainty, that it was the most magical holiday season of my life. the kids got it this year. i mean, really truly GOT it. they were so enmeshed in the magic, the festivity of it all and it was truly a dream. from cookie baking to story telling to tradition creating....it was complete and total perfection. perfection, mind you, that was laced with lots of crazy hectic insanity....but perfection nonetheless. i wouldn't have changed one minute of it.
and now it is a new year. full of blank slates, do overs, and wonderous possibility. i am so looking forward to it.
we have but one real tried and true new years resolution this year and here it is. LIVE MORE SIMPLY. in all aspects of our life. we have so many blessings and so much to be thankful for....and i find that it's easier to appreciate all of that when things aren't so darn complicated. so simple it is. i like simple. i can (try to) do simple.
ben's new phrase-on-repeat is "whassup bua" as he chases our poor cat around the house and emma has been very concerned with whether or not her barbie's are smart. "I know they are very pretty, mommy. But are they smart?" (there are about 50 different reactions i have to that little conversation which all end with "hell yea. you go girl!") we love these kids and hope to dissipate at least a fraction of their tazmanian devil sytle energy with the multiple trampolines they got for christmas. seems simple enought, right?
right. so here's to you 2014. you are going to be just simply wonderful, i can already tell.
i resolve to be here more. to bring my thoughts, our stories, my authentic self. writing brings me such joy and brings with it a sense of therapeutic relief. it's fun, it's difficult, but most of all it is something that i really really enjoy (for a variety of very different reasons). and i've put it off for the past few months because, well, "there just aren't enough hours in the day." but as i continue to remind myself....we make time for the the things, the people, the experiences that are important. easier said than done, i know....but worthy of striving for nonetheless.
the end of the year, as i'm sure is true in most homes, flew by in a flash. but i will say with absolute certainty, that it was the most magical holiday season of my life. the kids got it this year. i mean, really truly GOT it. they were so enmeshed in the magic, the festivity of it all and it was truly a dream. from cookie baking to story telling to tradition creating....it was complete and total perfection. perfection, mind you, that was laced with lots of crazy hectic insanity....but perfection nonetheless. i wouldn't have changed one minute of it.
and now it is a new year. full of blank slates, do overs, and wonderous possibility. i am so looking forward to it.
we have but one real tried and true new years resolution this year and here it is. LIVE MORE SIMPLY. in all aspects of our life. we have so many blessings and so much to be thankful for....and i find that it's easier to appreciate all of that when things aren't so darn complicated. so simple it is. i like simple. i can (try to) do simple.
ben's new phrase-on-repeat is "whassup bua" as he chases our poor cat around the house and emma has been very concerned with whether or not her barbie's are smart. "I know they are very pretty, mommy. But are they smart?" (there are about 50 different reactions i have to that little conversation which all end with "hell yea. you go girl!") we love these kids and hope to dissipate at least a fraction of their tazmanian devil sytle energy with the multiple trampolines they got for christmas. seems simple enought, right?
right. so here's to you 2014. you are going to be just simply wonderful, i can already tell.
sweet child of mine: benjamin turns 2
oh sweet benjamin.
2 years ago to this day, we welcomed our little dude into the world. it seems like it was yesterday....yet at the same time i can truly not remember life without him.
benjamin, you have always been blessed with the sweetest of temperaments. even as a tiny baby, it has always been your nature to snuggle and as you grew a bit older, you began to grace us with the same smiles and laughter that fill our home to this day. it has been this last year, though, in which your magical personality has really blossomed. you have the greatest sense of humor and not only do you spend most of your time happy, you truly make an effort to try and make other people smile & laugh as well. it's pretty remarkable, honestly. you are a little boy in the truest of senses.....you LOVE trucks and as we drive to school each day not only do you have one in each hand but you point out all the ones that pass us by. you love to run and jump and tumble....you put on quite the show the other night as you jumped in the air and landed on your bottom over and over and over each time followed by a hysterical new "maniac laugh" and i truly believe that you were trying to entertain the crowd! (and that you did!). and, much to your mommy's happiness you, despite your wild boy antics, still maintain your love for hugs and cuddles (please don't ever lose that part, okay? deal?). you are the best of both worlds. you are the best of our world and we love you beyond measure. you AND your sister who is clearly becoming one of your best friends.
and to top it all off, you are the spitting image of your daddy. cue my melting heart.
you talk ALOT. in full sentences and say the cutest things. you love to read and in quiet moments, we usually find you in the reading corner of your playroom reading a book (usually about trucks) aloud.
the issues we are having with your phosphorus levels and the bowing in your legs are working out. i wanted to mention them here because this issue is NOT who you are but it is part of your story. you are such a champ with your medication and make us so proud. we met with the orthopedic surgeon on Friday who gave us the great news that you do not need leg braces and even better, no surgery. you are going to meet with a physical therapist this upcoming week who will give us some fun exercises and games to play at home to help you run, jump, and tumble even better than you already do. oh yes!
we spent yesterday celebrating you and all the unbelievable joy you bring to our life. your grandparents, your aunt ellie, and babysitter turned member of our family + friend natalie + stephen joined in on the fun. you ate LOTS of treats and got lots of love and attention (whats new?!). you opened presents....your favorite of which was a new fishing pole. you have spent the last few weeks wandering into the garage and finding daddy's poles so we thought this might be a good fit for you. boy were we right. this was one of the first gifts you opened and it was a looooong time before another gift was touched. you danced and squealed and yelled to everyone, "look it! my fishing pole!". when we tried to encourage another gift be opened....you ran to your room with your pole and shut the door!!!
sweet boy, you are just the most amazing person. we love you more than you can possibly understand. you are our purpose and being your mommy is the greatest blessing in my life. i love you to the moon & back and even more than that.
happy 2nd birthday, big boy. here's to endless adventures to come! love, mommy.
2 years ago to this day, we welcomed our little dude into the world. it seems like it was yesterday....yet at the same time i can truly not remember life without him.
benjamin, you have always been blessed with the sweetest of temperaments. even as a tiny baby, it has always been your nature to snuggle and as you grew a bit older, you began to grace us with the same smiles and laughter that fill our home to this day. it has been this last year, though, in which your magical personality has really blossomed. you have the greatest sense of humor and not only do you spend most of your time happy, you truly make an effort to try and make other people smile & laugh as well. it's pretty remarkable, honestly. you are a little boy in the truest of senses.....you LOVE trucks and as we drive to school each day not only do you have one in each hand but you point out all the ones that pass us by. you love to run and jump and tumble....you put on quite the show the other night as you jumped in the air and landed on your bottom over and over and over each time followed by a hysterical new "maniac laugh" and i truly believe that you were trying to entertain the crowd! (and that you did!). and, much to your mommy's happiness you, despite your wild boy antics, still maintain your love for hugs and cuddles (please don't ever lose that part, okay? deal?). you are the best of both worlds. you are the best of our world and we love you beyond measure. you AND your sister who is clearly becoming one of your best friends.
and to top it all off, you are the spitting image of your daddy. cue my melting heart.
you talk ALOT. in full sentences and say the cutest things. you love to read and in quiet moments, we usually find you in the reading corner of your playroom reading a book (usually about trucks) aloud.
the issues we are having with your phosphorus levels and the bowing in your legs are working out. i wanted to mention them here because this issue is NOT who you are but it is part of your story. you are such a champ with your medication and make us so proud. we met with the orthopedic surgeon on Friday who gave us the great news that you do not need leg braces and even better, no surgery. you are going to meet with a physical therapist this upcoming week who will give us some fun exercises and games to play at home to help you run, jump, and tumble even better than you already do. oh yes!
we spent yesterday celebrating you and all the unbelievable joy you bring to our life. your grandparents, your aunt ellie, and babysitter turned member of our family + friend natalie + stephen joined in on the fun. you ate LOTS of treats and got lots of love and attention (whats new?!). you opened presents....your favorite of which was a new fishing pole. you have spent the last few weeks wandering into the garage and finding daddy's poles so we thought this might be a good fit for you. boy were we right. this was one of the first gifts you opened and it was a looooong time before another gift was touched. you danced and squealed and yelled to everyone, "look it! my fishing pole!". when we tried to encourage another gift be opened....you ran to your room with your pole and shut the door!!!
sweet boy, you are just the most amazing person. we love you more than you can possibly understand. you are our purpose and being your mommy is the greatest blessing in my life. i love you to the moon & back and even more than that.
happy 2nd birthday, big boy. here's to endless adventures to come! love, mommy.
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