As the hours turn into days, then weeks and months, the inexpalainable suffocation of loosing Aidan builds untill there's no other option left for me then to scream. I scream so loud and so long I wonder if the neighbors will worry. Luckily, my pillow muffles the noise. Miss Teagan keeps on napping and the world keeps on turning, all while the uncontrollable downward spiral into the numb, surreal, suffocating confinement of a loss only a mother can know takes hold and drags me under.
Most days you put one foot in front of the other. You go through the motions of the life your supposed to live. You find little moments of stolen memories that bring a smile to your face and beg your attention, and it's those moments that make you remember why your still here. These memories, these pictures of time remind us of all the reasons we are so fortunate our loved ones graced us with their presence, if even for a short time.
Our Aidan was an amazing ball of energy and light. The most magical soul who drew people to him like a polar force. I'll never forget the day he sat down next to a complete stranger at the grocery store. The man was older and less then fashionably current. I tried to nudge Aidan on to keep shopping. Instead Aidan, then 2-ish said, "Hi, my name is Aidan, this is my mom, I have a dog named Seven and my dad's at work." The man looked at me and I him astounded. In the mere seconds it took Aid to see the depth of this person, his need for compassion and kindness, it may take another person a lifetime.
After talking to the man for less then 5 minutes, we found out his daughter had recently passed away. He hadn't left his house since her funeral and had gone without his needed medications. Aidan gave him a chance for conversation he wouldn't have otherwise had. What Aidan gave to me opened my eyes and heart to compassion that knows no limit.
Tonight, while scrunched into Miss Teagans princess tent, Teagan, myself and Seven...the 45lb-ish wiley dog with a deadly tail, Teagan was on repeat mode saying, "Sevie's good puppers momma". To which my reply was "yes Hun, she is good!" I asked T if she loved Seven as I have numerous times, this time her answer surprised me. Teagan said, "Mom, Sevie's good puppers, brothers puppers. I love brother and brother loves Sevie." Not sure what to say I asked Teagan if she loved brother, she took about a minute to think, looked me in the eye and said "yes, I love brother".
I'm reminded of her love for Aidan daily as she finds new ways to prove to me he's close to her and teaching her the good and bad life has to offer. Over Easter we went to visit Aidan. Teagan knew we were "at brothers". She went right to his headstone, promptly bent down to his picture and gave Aidan a kiss. She said "Hi brother! Love you"! She then went about arranging the endless supply of pinwheels surrounding Aidan's grave to her liking.
I suppose the endless battle against drownding in grief may one day subside. The fear that Tegan will never know what an amazing person her brother is subsides when I realize he's there with her every step of the way. The loss this world faces at the passing of my best friend is insurmountable. I try every day to teach Teagan how wonderful she is and how much she has to teach others. The only thing is, she already has the best teacher out there...we just can't see him like she does.
Friday, April 20, 2012
Sunday, February 19, 2012
Magic
Such a jumbled mess. My thoughts fly from one extreme to the next. Watching Teagan dance around and jump, literally all over me. I am reminded of all the times Aidan wanted to wrestle or jump on his daddy. I think of all the times I watched my precious boy play so hard, and in less then minutes be so winded he had to "take a break".
Watching Teagan today play so hard and keep comming back for more at full steam only proves to me how hard it was for Aidan, and how hard he fought every day to wring the most out of life. From the time he woke up he fought. He was tired, and yet he brought his little body to the day and begged for all the day had to offer.
After moving into a "big boy bed" shortly before his sister was born, Aid began waking up and coming to our room. The first thing we heard was his door slam open followed closely by a loud pitter patter of his pajamaed feet. The next thing we heard is "guys, guys you awake?" Of course we answered with climb up buddy, and Aid would make the trek up into our bed.
I felt so privileged to hear those words...no matter the sleep deprivation it promised.
Shortly after one of the last times Aidan was hospitalized for a "preventive" scope, he came home on oxygen. I remember vivadly how much he HATED the stickers that held his oxygen on. One of the few times I left the hospital to take a shower and love on Teagan, Ryan was keeping watch, and I can only imagine the helplessness he felt, as Aid's nurse deemed him needfull of these atrocities stuck to his beautiful cheeks. Most likely due to his fear of wearing a cannula, his fear of "stickers" that hurt him every time we were in the hospital. Really? There's no other way to explain to a 3 year old his "super speed" was getting pumped into him?
What seemed like a death sentence came in the form of an oxygen concentrator and a 50 foot cannula. To Aidan he was home bound, the end of running as fast as he could as long as he could outside.
Our lives had forever changed. Our son was now seen as a "sick person." I remember thinking "it's only temporary", as the doctors had promised us. Wishing and hoping that was the case I remember thinking every doctor visit would offer a reprieve from the tether of his oxygen.
Instead of fighting a losing battle of having Aidan take off his oxygen during the night in his own bed to come sleep with us, we decided to move him to our room. Every night we rolled the oxygen concentrator to our room, we readjusted his cord so he had as much movement as possible. Every night I remember thinking how soothing the neverending hum was, I was never the one tethered to the machine.
I would lift Aid up into our bed and lay with him untill he drifted off to sleep. He would get so mad at me for trying to snuggle him "like a baby".
That lasted for a good 3 minutes. Shortly after that fiesty 3 minutes he would get angry I wasn't closer to him. He would turn his body...after moving his cord, yell at me to move closer, and pull my arm around him. Visually, the best thing I can offer you, is that I spooned him. The only difference is, instead of spooning, I was lucky enough in those few moments before he fell asleep to hold the whole world in my arms.
Every extra book he insisted on, every minute he fought his sleep, I wish I had back. Every twist and turn and kick to the throat I received during those countless nights of Aidan sleeping in our bed, I'd take any and every day of the week one-million times over.
I guess the lesson I take with me tonight, on this one year anniversary of Aidan's funeral....
Never take for granted the heaven you have beside you. Never let the little moments you have today seem hopeless. Never take for granted the magic you enjoy everyday in your children...you never know when you may loose it.
Tonight I had the feeling I was drowning. It's a lot less frequent the it used to be, but still ever present. The tide rolls me under, I struggle to breathe, I give in and let the all consuming wave of loss take over, and I try to imagine what a world without my light, my Aidan is to be.
All consuming falls short. The only reprieve from the growing tide is the light that now guides me, my Teagan. The light Teagan follows, her best friend, her protector, her big brother. My light in the storm, my soul mate, waits for me just beyond the dark, our Aidan, our superhero.
Watching Teagan today play so hard and keep comming back for more at full steam only proves to me how hard it was for Aidan, and how hard he fought every day to wring the most out of life. From the time he woke up he fought. He was tired, and yet he brought his little body to the day and begged for all the day had to offer.
After moving into a "big boy bed" shortly before his sister was born, Aid began waking up and coming to our room. The first thing we heard was his door slam open followed closely by a loud pitter patter of his pajamaed feet. The next thing we heard is "guys, guys you awake?" Of course we answered with climb up buddy, and Aid would make the trek up into our bed.
I felt so privileged to hear those words...no matter the sleep deprivation it promised.
Shortly after one of the last times Aidan was hospitalized for a "preventive" scope, he came home on oxygen. I remember vivadly how much he HATED the stickers that held his oxygen on. One of the few times I left the hospital to take a shower and love on Teagan, Ryan was keeping watch, and I can only imagine the helplessness he felt, as Aid's nurse deemed him needfull of these atrocities stuck to his beautiful cheeks. Most likely due to his fear of wearing a cannula, his fear of "stickers" that hurt him every time we were in the hospital. Really? There's no other way to explain to a 3 year old his "super speed" was getting pumped into him?
What seemed like a death sentence came in the form of an oxygen concentrator and a 50 foot cannula. To Aidan he was home bound, the end of running as fast as he could as long as he could outside.
Our lives had forever changed. Our son was now seen as a "sick person." I remember thinking "it's only temporary", as the doctors had promised us. Wishing and hoping that was the case I remember thinking every doctor visit would offer a reprieve from the tether of his oxygen.
Instead of fighting a losing battle of having Aidan take off his oxygen during the night in his own bed to come sleep with us, we decided to move him to our room. Every night we rolled the oxygen concentrator to our room, we readjusted his cord so he had as much movement as possible. Every night I remember thinking how soothing the neverending hum was, I was never the one tethered to the machine.
I would lift Aid up into our bed and lay with him untill he drifted off to sleep. He would get so mad at me for trying to snuggle him "like a baby".
That lasted for a good 3 minutes. Shortly after that fiesty 3 minutes he would get angry I wasn't closer to him. He would turn his body...after moving his cord, yell at me to move closer, and pull my arm around him. Visually, the best thing I can offer you, is that I spooned him. The only difference is, instead of spooning, I was lucky enough in those few moments before he fell asleep to hold the whole world in my arms.
Every extra book he insisted on, every minute he fought his sleep, I wish I had back. Every twist and turn and kick to the throat I received during those countless nights of Aidan sleeping in our bed, I'd take any and every day of the week one-million times over.
I guess the lesson I take with me tonight, on this one year anniversary of Aidan's funeral....
Never take for granted the heaven you have beside you. Never let the little moments you have today seem hopeless. Never take for granted the magic you enjoy everyday in your children...you never know when you may loose it.
Tonight I had the feeling I was drowning. It's a lot less frequent the it used to be, but still ever present. The tide rolls me under, I struggle to breathe, I give in and let the all consuming wave of loss take over, and I try to imagine what a world without my light, my Aidan is to be.
All consuming falls short. The only reprieve from the growing tide is the light that now guides me, my Teagan. The light Teagan follows, her best friend, her protector, her big brother. My light in the storm, my soul mate, waits for me just beyond the dark, our Aidan, our superhero.
Monday, February 6, 2012
The beginning of the end
1 year post surgery....
The last year has offered both gut wrenching agony and so many moments we are greatfull for all the love and support we have. It has also moved slower then cold tar. I look for ways every day to offer myself and the insight I may have gained from our experience to the world. Although most days I find myself stuck and looking for a way to invigorate my daughters life, every now and then I offer a bit of "wisdom"if you may to those around me. I have an opportunity to write a paper that highlights all the aspects of life a "diagnosis" changes.
Making the decision to go back to school was, to be honest, hell. Anything from a mention of lab values to pediatric surgery triggers feelings of loss. So great and all consuming it's all I can do to write the words themselves.
Finding something to focus my efforts on, to pretend I'm normal, has offered me an outlet.
Today marks the eve of the one year anniversary of a surgery that would forever alter our lives. This hopefully miraculous act by a team of people dedicated to saving the life of my own personal super hero.
I only just today pulled up the site we created to keep everyone informed about the events unfolding.
Honestly I have been to scared to face the writing I posted and the completely candid pictures contained within.
Upon receiving a password reset, I took a deep breath and dove in.
The waters are all consuming.
The extrodinary hopes we had, all the prayers, all the dreams we placed in the medical teams hands. The undying love we HAVE for our son. It all went under the knife...
http://www.carepages.com/carepages/SuperAidsRexShunt/updates/2926899
As I sit here writing, I am humbled by the remembrance of sitting, late night in a Chicago home. My family all asleep while I write. Only hours before an irrevocable act would leave us forever changed as people, as a family.
The only thing I can offer is the absolute certainty my son was here for a reason.
I hear it all the time, "the had a message, a reason for being here."
Well, for me, this super hero, this love of a lifetime, this "never be the same" brief moment in time lives on forever. He lives in every breath I take. He lives in every time his sister tells me she sees a "big truck". He lives every in every time I hear his name or see his face.
I invite you to read a few words written one year ago and hope you are moved. Weather it's good or bad. Wether you feel something or not, this is one more amazing way my light, my everything, my SON touches everything and turns it to gold.
The last year has offered both gut wrenching agony and so many moments we are greatfull for all the love and support we have. It has also moved slower then cold tar. I look for ways every day to offer myself and the insight I may have gained from our experience to the world. Although most days I find myself stuck and looking for a way to invigorate my daughters life, every now and then I offer a bit of "wisdom"if you may to those around me. I have an opportunity to write a paper that highlights all the aspects of life a "diagnosis" changes.
Making the decision to go back to school was, to be honest, hell. Anything from a mention of lab values to pediatric surgery triggers feelings of loss. So great and all consuming it's all I can do to write the words themselves.
Finding something to focus my efforts on, to pretend I'm normal, has offered me an outlet.
Today marks the eve of the one year anniversary of a surgery that would forever alter our lives. This hopefully miraculous act by a team of people dedicated to saving the life of my own personal super hero.
I only just today pulled up the site we created to keep everyone informed about the events unfolding.
Honestly I have been to scared to face the writing I posted and the completely candid pictures contained within.
Upon receiving a password reset, I took a deep breath and dove in.
The waters are all consuming.
The extrodinary hopes we had, all the prayers, all the dreams we placed in the medical teams hands. The undying love we HAVE for our son. It all went under the knife...
http://www.carepages.com/carepages/SuperAidsRexShunt/updates/2926899
As I sit here writing, I am humbled by the remembrance of sitting, late night in a Chicago home. My family all asleep while I write. Only hours before an irrevocable act would leave us forever changed as people, as a family.
The only thing I can offer is the absolute certainty my son was here for a reason.
I hear it all the time, "the had a message, a reason for being here."
Well, for me, this super hero, this love of a lifetime, this "never be the same" brief moment in time lives on forever. He lives in every breath I take. He lives in every time his sister tells me she sees a "big truck". He lives every in every time I hear his name or see his face.
I invite you to read a few words written one year ago and hope you are moved. Weather it's good or bad. Wether you feel something or not, this is one more amazing way my light, my everything, my SON touches everything and turns it to gold.
Saturday, January 21, 2012
Catch up
It's been far to long that I've written. Far to long that I faced what I was feeling. Since my last post I have not only started school again, but met some people I have no doubt will help me in my journey. I feel so lucky, and pardon the quote, blessed to have the friends I do in my life. I truely can not picture my life without the support system, new and proven.
Two days ago we received papers sent to us from a grief support in Chicago that we receive every big holiday or upcoming event. For me I put off reading the material and letter untill I "feel" prepared to sacrifice any further productivity, as it leaves me a crying and emotional mess.
This time it was the papers I've feared the most since a death certificate. "Upon the aniversary of your child's death".
Really just the words alone make me want to vomit. The images that simple phrase conjures can only be described as life altering, breath stopping, and eviserating.
Only two people here on earth could know the pain I speak of, me and my husband. The only two people present the night our son left this earth.
I'm sure 10 nurses at least, all the extra support personnel involved in Aidan's "resuscitation" think they know what they where a part of, they don't. The images I have of them fail to meet the standards I think of when I think of when i think of my colleges who offered a second chance at life in the SICU at the University of Utah.
The night Aidan left us will be forever scorched in my memory. I started pleading, as chest compressions seemed desperate, both with a higher power and the medical staff working on my best friend, my every living breath. I knew the scene I'd been a part of so many times at work, the scene only acted out on T.V. And movies would be made right. Instead, the fellow, the man "in charge" who i'd questioned so many times, came to us and offered nothing but "I'm sorry, please, lets go to another room, we've exhausted all our resources."
Really, let's go to another room? You ask me to leave my child? At this point of irrevocable care? You must be reaching for a sanity that escapes you.
I offered any solution I could think of. Looking back, I know I offered everything from an LVAD/RVAD OPTION TO my own heart and lungs. However rash it was, the lengths I'd go to in the moment the medical team gives up on your child, I was willing to exhaust.
Obviously we all know the outcome of that night.
Ryan and I went back to a quiet apartment without one of the two people we dedicated our entire lives to. Without the little man who literally sealed us together, who literally offered a chance to hope, and without our family intact.
I was so scared and so absolutely in denial all I could do is pray and hope I'd wake up and have it all be a dream.
We arrived home in SLC to a house full of love and support.
Never in my life have I felt actual emotion, love and support, as I did the night arrived home. Our friends and family offered so much love and compassion with all of the floral arrangements and supplies they left, it took my breath away. The horrible thoughts I had of comming home to a life with out Aidan were buffered by the support we received that night. I don't know any other way we could have survived that homecoming.
I've read time and time again how the anniversary of a childs death is often more of a build up then actually surviving the day. I myself will only relive the events I experianced that fatefull day, February 9th, 20011. Everything seemed to go against us. Aidan told the doctors outright he hurt and had they have listened, they would've seen what we saw, something wasn't right.
Something was off since he came out of surgery.
I was taught the parent is ALWAYS right. The only way a nurse can know if something has changed is when a parent tells them so. Every single complaint we had was ignored and written off.
Regardless, our shining superhero can NEVER be brought back. My best friend, my everything was taken from me in a second, or rather 2 days a medical team refused to listen to a parent who may have saved his life.
All I can ask is, please understand, a bit of a learning curve for myself and my family, we may take a bit longer on the uptake, we may have set backs at the first glance of a picture or even the idea superheroes exist. We know superheroes exists because we've met one, our Aidan did nothing less then inspire every single person he met.
The comming months and years will be painfull and at many points unbearable. The past will rear its head and make life absolutely impossible.
Please try to understand, as these days eneviatbly offer a complete shutdown of verbal and social interactions.
The people who know Aidan know he is in every single happy thought or experience you endure. Aidan knows the best way to make you smile and is quick to offer his Awsome dance moves or a giant smile and hug to make anyone greatful for the time they enjoy here on earth.
All I can do is ask you to keep our amazing little man close to your heart. Every time I see Teagan break it down, every time I see a "superhero act" from a "normal person" I know it's Aidan. I hear my best friend cheer me on when he's proud of me. I can't imagine working so hard for anyone day in and day out as I do for Aidan.
I have complete and blind faith, my superhero guides others, and most importantly, he teaches me EVERY DAY how to be a better person.
I love you Aidan James Hodgson
To Infinity and Beyond
Two days ago we received papers sent to us from a grief support in Chicago that we receive every big holiday or upcoming event. For me I put off reading the material and letter untill I "feel" prepared to sacrifice any further productivity, as it leaves me a crying and emotional mess.
This time it was the papers I've feared the most since a death certificate. "Upon the aniversary of your child's death".
Really just the words alone make me want to vomit. The images that simple phrase conjures can only be described as life altering, breath stopping, and eviserating.
Only two people here on earth could know the pain I speak of, me and my husband. The only two people present the night our son left this earth.
I'm sure 10 nurses at least, all the extra support personnel involved in Aidan's "resuscitation" think they know what they where a part of, they don't. The images I have of them fail to meet the standards I think of when I think of when i think of my colleges who offered a second chance at life in the SICU at the University of Utah.
The night Aidan left us will be forever scorched in my memory. I started pleading, as chest compressions seemed desperate, both with a higher power and the medical staff working on my best friend, my every living breath. I knew the scene I'd been a part of so many times at work, the scene only acted out on T.V. And movies would be made right. Instead, the fellow, the man "in charge" who i'd questioned so many times, came to us and offered nothing but "I'm sorry, please, lets go to another room, we've exhausted all our resources."
Really, let's go to another room? You ask me to leave my child? At this point of irrevocable care? You must be reaching for a sanity that escapes you.
I offered any solution I could think of. Looking back, I know I offered everything from an LVAD/RVAD OPTION TO my own heart and lungs. However rash it was, the lengths I'd go to in the moment the medical team gives up on your child, I was willing to exhaust.
Obviously we all know the outcome of that night.
Ryan and I went back to a quiet apartment without one of the two people we dedicated our entire lives to. Without the little man who literally sealed us together, who literally offered a chance to hope, and without our family intact.
I was so scared and so absolutely in denial all I could do is pray and hope I'd wake up and have it all be a dream.
We arrived home in SLC to a house full of love and support.
Never in my life have I felt actual emotion, love and support, as I did the night arrived home. Our friends and family offered so much love and compassion with all of the floral arrangements and supplies they left, it took my breath away. The horrible thoughts I had of comming home to a life with out Aidan were buffered by the support we received that night. I don't know any other way we could have survived that homecoming.
I've read time and time again how the anniversary of a childs death is often more of a build up then actually surviving the day. I myself will only relive the events I experianced that fatefull day, February 9th, 20011. Everything seemed to go against us. Aidan told the doctors outright he hurt and had they have listened, they would've seen what we saw, something wasn't right.
Something was off since he came out of surgery.
I was taught the parent is ALWAYS right. The only way a nurse can know if something has changed is when a parent tells them so. Every single complaint we had was ignored and written off.
Regardless, our shining superhero can NEVER be brought back. My best friend, my everything was taken from me in a second, or rather 2 days a medical team refused to listen to a parent who may have saved his life.
All I can ask is, please understand, a bit of a learning curve for myself and my family, we may take a bit longer on the uptake, we may have set backs at the first glance of a picture or even the idea superheroes exist. We know superheroes exists because we've met one, our Aidan did nothing less then inspire every single person he met.
The comming months and years will be painfull and at many points unbearable. The past will rear its head and make life absolutely impossible.
Please try to understand, as these days eneviatbly offer a complete shutdown of verbal and social interactions.
The people who know Aidan know he is in every single happy thought or experience you endure. Aidan knows the best way to make you smile and is quick to offer his Awsome dance moves or a giant smile and hug to make anyone greatful for the time they enjoy here on earth.
All I can do is ask you to keep our amazing little man close to your heart. Every time I see Teagan break it down, every time I see a "superhero act" from a "normal person" I know it's Aidan. I hear my best friend cheer me on when he's proud of me. I can't imagine working so hard for anyone day in and day out as I do for Aidan.
I have complete and blind faith, my superhero guides others, and most importantly, he teaches me EVERY DAY how to be a better person.
I love you Aidan James Hodgson
To Infinity and Beyond
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