Riley's Little Steps
Donation protected
Riley's Little Steps 
My story, our story, our journey, my life since you came into this world...
There is truly no need to go into detail about the painful pregnancy that consisted of many medical scares, the amino that was done at 21 weeks, the month of waiting for results, the lovely root canal at eigth months, seven months with my head in the toilet, no appetite, weekly trips to the hospital, a blissful wedding that one could only hope would last a life time, and the bond that was created before you even arrived in this world between you and I. You got me through nine months of hell!
Now it is my turn to get you through a life time of daily struggles.
Dear Riley,
You were born exactly one month to the day of your dad and mom’s blissful, hopeful, and fairy tale wedding (minus being nine months pregnant and in an immense amount of pain). I wanted more than anything after all that you and I went through during those nine months together to have the same last name. What more could I ask for? Other than a healthy baby boy that we were going to name Riley Robert Duquette.
Riley, you were born May 28th, 2012. You would think that after all that we had gone through together in nine months ... we would have gotten some kind of break the day that you were born.
You and me buddy struggled together, both of us letting go of our breathing during the delivery. I remember laying back with the oxygen mask on my face and slowly drifting away, I remember you not moving inside me anymore, and I remember looking at your dad and closing my eyes. Next thing I remember is opening my eyes to very bright lights, buddy they were the kind of lights that you love now. If only you could live in an operating room. I remember crying, my whole body shaking uncontrollably, and putting my head to the side to throw up in a white hospital bag. I remember having my eyes closed with tears dripping down my face, feeling numb all over, and being so scared. Excitement was a feeling far away at this point, I knew I wasn’t well, and I knew in my heart that something was wrong. I remember opening my eyes for a second time and your dad placing your head against my head. I remember your big blue eyes and your smell. My heart had been taken for the first time, and consumed by this over whelming feeling of what it meant to truly love something, someone, for the first time in my life.
Riley, I’m talking about you buddy... you are my first true love.
Riley you wanted nothing to do with breast feeding, and you wanted nothing to do with being outside of me! I remember it like it was yesterday... I was lying in bed recovering from having a c section, and at that point it hadn’t been even twenty four hours after you were born. Your father asked if he could leave and go play men’s league basketball. Did he go? Yes he did, I remember lying in bed looking out the window crying, thinking to myself what have I done, what am I going to do? Then you started crying for me, I remember the pain of sitting up on my own, my legs were still numb, still had the catheter in, and had only recently stopped throwing up. But you ... Riley you needed me and I was going to pull it together to get to you. Not goanna lie, it took me about 15 minutes to get out of bed and walk those 3 steps over to your little bassinet that the hospital had you in. I remember holding you close to my heart, crying, standing there legs numb, body still shaking from the drugs still trying to ware off, light headed, weak, and no longer feeling alone.
That night the nurse took you down to the nursery, stating that I needed to get some rest. I woke up at 4am with this awful feeling that something was wrong. Determined to find out, I got out of bed for a second time to go find you. The nurse stated that they were very concerned about your breathing, how fast it was, and how you seemed to be struggling. Later that morning you were being sent over to Maine Medical in an ambulance to the Nicu. At this time I had no choice but to pull it together and begin walking, and pretending like I was ok to be mobile not even two days after you were born.
First night at the Nicu...
Riley this woman deserves her own paragraph. There I was holding your little hand through a plastic door, and there she was... Tall and slim, bright blonde hair, light red shirt, black long skirt, black tall high heals, clink clink clink! She came into our room, set down her black purse next to the machines that were providing oxygen for you to breathe. Briefly she made the time to look at us for maybe a split second to say... "I’m Doctor Rosemary Smith I’m a geneticist." Mrs. Smith then got out her ruler and began measuring the distance between your eyes, your nipples, your skin on your neck, looked at your boy parts, flipped you over and looked at your butt, and then looked at me and said… “Your son has Noonan Syndrome.” She then looked at the nurse and said, "have blood work done in the morning and have it shipped off to Harvard for the results." Mrs. Smith then looked at me and then looked at her watch and said … “Oh I have to get going, I have to pick up my kids from soccer practice.” Turned, grabbed her black purse, and clink clink clink all the way out! Little did I know this was the first instant, first experience with a medical professional that I had to encounter on this long long journey of many medical providers that were going to be in our lives.
I quickly became what they call, “Momma Bear,” I like to think of myself as your “Protector!”
I never left your side Riley... I was there for three weeks with you in the Nicu. The nurses told me I was a “milk machine,” I was determined to make sure that you were getting milk from me. Stocking the fridge left and right, at one point we had to freeze some of my milk! This "milk factory’s" mind during those moments was free for a second from all the worry, all the questions that were running through my mind and what I really wanted to do the next time I saw Dr. Smith!
No one plans for this, no one plans to not take your baby home, no one plans to not have a healthy baby, no one plans to fight a fight that in the end you can’t win.
Needless to say, both Dr. Smiths that received the blood work back stating that you did not have Noonan’s Syndrome still sat your father and I down and said...
“I’m willing to bet one million dollars that your son has Noonan’s Syndrome.”
My response, “But Dr. Wendy Smith (no longer working with Rosemary I took care of that) the blood work states that he does not have it, how can you say that he does when actual blood work is stating that he does not?” “He has all the facial characteristics and I’m willing to bet that is what it is.” Both Smiths did not like me, because I was not going to feed into the bullshit. My bed side manner reflected their bed side manner towards me! It took your mom five months to figure out and convince medical providers that there was something else going on. Five months! Dr. David Walton an eye doctor in Boston Massachusetts examined your eyes for 6 hours, looked at us and said...
“Your son is blind, I'm suprised at how well he is doing. your son has Zellweger Syndrome, he will not make it past a year, take him home, love him, there is nothing you can do to help him he is going to die.”
Let’s just say that was the longest two and half hour car ride back to Maine. Nothing had been confirmed, blood work needed to be done, and the waiting began. Or should I say, "Google Search" began ...
Peroxisomal Biogenesis Disorder (PBD), also known as Zellweger Spectrum Disorder, is a rare, genetic, metabolic, terminal condition affecting all major systems of the body. Children with PBD-ZSD commonly exhibit senorineural hearing hoss, vision loss, hypotonia )low muscle tone), seizures, developmental delay, liver and kidney issues, problems with bone formation, feeding issues, and adrenal insufficiency.
November 2012 … you and I were home together... your dad was at work and going straight from work to men’s league basketball. It was six thirty at night and the hospital was calling me. I picked up and Dr. Blumenthal your primary care doctor was on the phone. I could tell already that he had the results from the blood work.
“I’m so sorry to call you this late, but I knew that you would want these results as soon as I had them in my hands. Mrs. Duquette... I’m so sorry to have to tell you this but... the blood work came back positive for Zellweger Syndrome.”
I was completely numb. Body, mind, and soul numb. You were laying on the coach sound asleep, and I ran upstairs, shut the bedroom door and lost it. Unable to breath, unable to process thoughts, or my emotions, and it hit me Riley… I was going to loose some day in my life time my first and only true love. A feeling that no one can truly understand, a feeling that lives with you every single day, crosses your mind at the worst times, lives in your dreams, and until it happens I know that this feeling will never subside. Once you are gone, then the grieving of your absence will take over.
Now it is my turn to get you through a life time of daily struggles.
Riley’s little steps I will call it!
Riley each day you bring me light, each day we discover something new together, each day I try to give you the strength to explore outside of our reach together. Each day is a new day, and as your steps may be small, they are the biggest steps in everyone’s heart that meets you, and encounters you for the first time. None of us know how long you will be here, and we all hope you out live us all!
Riley I will fight to protect you and give you what it is that you deserve. You have taught me to value things in a different light, prioritize things in a different light. You have given me a voice that I did not know that I had. I can’t remember the last time I did something for myself, and I can’t remember the last time that I truly cared about that. You rely on your care taker. You rely on us expanding your little world of limited lights, limited sound, and limited mobility. I can’t imagine how that would feel, but I put myself in your shoes every day, and trust me I know they are big shoes to fill.
I love you Riley Robert. I love you more and more each day, I can’t imagine not being able to hear your laugh, look into your bright blue eyes, smell your skin, and cuddle you all over. I won’t give up, I will be your “protector” until the end, and I promise that I will never loose site of the true meaning of love, because you have given it to me forever.
This year of your life was a crazy one. Mom and dad are no longer together. You are living primarily in New Hampshire. You are now receiving the best medical care you have ever received at Dartmouth Hitchcock Hospital with a care team of three doctors that have worked with children just like you that have unfortunately already passed away. Riley you have had two major surgeris in one year. You had Cochlear Implant surgery on July 9th, and you had Gastrostomy surgery on December 4th. Without your hearing devices you are given silence, without any light you live in darkness, and without someone to move you ... you would get no where. Riley you are the smartest person I know, given all your limitations, given all that you have to go through, you still manange to have everyone that comes into contact with you wrapped around their fingers. You are a gift to all!
You are thriving and making gains in places that I never thought possible. Taking steps in your walker with limited support from us. Standing with your braces on for three to six minutes at a time while playing with toys. Your following high contrast things up to six feet away. You are exploring new toys that dont light up and dont make sounds. You still love to play the piano and that one note that you play over and over and over again is the prittiest sounding note I have ever heard. You are showing us all up, and I’m so proud of you!
I’m hoping that this year I can provide to you what I have the last two years, and that is raising enough money to reconnect with our GFPD family (Global Foundation for Peroxisomal Disorder).
This is a time where families from all over the world with children suffering from the same diagnosis as Riley get together to learn about new research that is being done. Past trial experiments that have been conducted, a time for the specialists to take a look at Riley and the other children. It is also a time for parents to grieve the loss of their little one and the daily struggles that we are all going through with our little ones that are still here.
The Global Foundation for Peroxisomal Disorder is holding their conference in Nebraska from July 17th through July 21st.
Any help that you are willing to give is greatly appreciated!
Having the ability to reconnect with these families and their children, gives me the feeling of comfort. As alone as this journey feels daily and even more so now as a single mom with two kids, given the opportunity to reconnect is a gift.
Thank you for reading just a short version of Riley’s Little Steps . . .
Karly
For more information on Peroxisomal Biogenesis Disorder please vist the below website !
http://www.thegfpd.org/
My story, our story, our journey, my life since you came into this world...
There is truly no need to go into detail about the painful pregnancy that consisted of many medical scares, the amino that was done at 21 weeks, the month of waiting for results, the lovely root canal at eigth months, seven months with my head in the toilet, no appetite, weekly trips to the hospital, a blissful wedding that one could only hope would last a life time, and the bond that was created before you even arrived in this world between you and I. You got me through nine months of hell!
Now it is my turn to get you through a life time of daily struggles.
Dear Riley,
You were born exactly one month to the day of your dad and mom’s blissful, hopeful, and fairy tale wedding (minus being nine months pregnant and in an immense amount of pain). I wanted more than anything after all that you and I went through during those nine months together to have the same last name. What more could I ask for? Other than a healthy baby boy that we were going to name Riley Robert Duquette.
Riley, you were born May 28th, 2012. You would think that after all that we had gone through together in nine months ... we would have gotten some kind of break the day that you were born.
You and me buddy struggled together, both of us letting go of our breathing during the delivery. I remember laying back with the oxygen mask on my face and slowly drifting away, I remember you not moving inside me anymore, and I remember looking at your dad and closing my eyes. Next thing I remember is opening my eyes to very bright lights, buddy they were the kind of lights that you love now. If only you could live in an operating room. I remember crying, my whole body shaking uncontrollably, and putting my head to the side to throw up in a white hospital bag. I remember having my eyes closed with tears dripping down my face, feeling numb all over, and being so scared. Excitement was a feeling far away at this point, I knew I wasn’t well, and I knew in my heart that something was wrong. I remember opening my eyes for a second time and your dad placing your head against my head. I remember your big blue eyes and your smell. My heart had been taken for the first time, and consumed by this over whelming feeling of what it meant to truly love something, someone, for the first time in my life.
Riley, I’m talking about you buddy... you are my first true love.
Riley you wanted nothing to do with breast feeding, and you wanted nothing to do with being outside of me! I remember it like it was yesterday... I was lying in bed recovering from having a c section, and at that point it hadn’t been even twenty four hours after you were born. Your father asked if he could leave and go play men’s league basketball. Did he go? Yes he did, I remember lying in bed looking out the window crying, thinking to myself what have I done, what am I going to do? Then you started crying for me, I remember the pain of sitting up on my own, my legs were still numb, still had the catheter in, and had only recently stopped throwing up. But you ... Riley you needed me and I was going to pull it together to get to you. Not goanna lie, it took me about 15 minutes to get out of bed and walk those 3 steps over to your little bassinet that the hospital had you in. I remember holding you close to my heart, crying, standing there legs numb, body still shaking from the drugs still trying to ware off, light headed, weak, and no longer feeling alone.
That night the nurse took you down to the nursery, stating that I needed to get some rest. I woke up at 4am with this awful feeling that something was wrong. Determined to find out, I got out of bed for a second time to go find you. The nurse stated that they were very concerned about your breathing, how fast it was, and how you seemed to be struggling. Later that morning you were being sent over to Maine Medical in an ambulance to the Nicu. At this time I had no choice but to pull it together and begin walking, and pretending like I was ok to be mobile not even two days after you were born.
First night at the Nicu...
Riley this woman deserves her own paragraph. There I was holding your little hand through a plastic door, and there she was... Tall and slim, bright blonde hair, light red shirt, black long skirt, black tall high heals, clink clink clink! She came into our room, set down her black purse next to the machines that were providing oxygen for you to breathe. Briefly she made the time to look at us for maybe a split second to say... "I’m Doctor Rosemary Smith I’m a geneticist." Mrs. Smith then got out her ruler and began measuring the distance between your eyes, your nipples, your skin on your neck, looked at your boy parts, flipped you over and looked at your butt, and then looked at me and said… “Your son has Noonan Syndrome.” She then looked at the nurse and said, "have blood work done in the morning and have it shipped off to Harvard for the results." Mrs. Smith then looked at me and then looked at her watch and said … “Oh I have to get going, I have to pick up my kids from soccer practice.” Turned, grabbed her black purse, and clink clink clink all the way out! Little did I know this was the first instant, first experience with a medical professional that I had to encounter on this long long journey of many medical providers that were going to be in our lives.
I quickly became what they call, “Momma Bear,” I like to think of myself as your “Protector!”
I never left your side Riley... I was there for three weeks with you in the Nicu. The nurses told me I was a “milk machine,” I was determined to make sure that you were getting milk from me. Stocking the fridge left and right, at one point we had to freeze some of my milk! This "milk factory’s" mind during those moments was free for a second from all the worry, all the questions that were running through my mind and what I really wanted to do the next time I saw Dr. Smith!
No one plans for this, no one plans to not take your baby home, no one plans to not have a healthy baby, no one plans to fight a fight that in the end you can’t win.
Needless to say, both Dr. Smiths that received the blood work back stating that you did not have Noonan’s Syndrome still sat your father and I down and said...
“I’m willing to bet one million dollars that your son has Noonan’s Syndrome.”
My response, “But Dr. Wendy Smith (no longer working with Rosemary I took care of that) the blood work states that he does not have it, how can you say that he does when actual blood work is stating that he does not?” “He has all the facial characteristics and I’m willing to bet that is what it is.” Both Smiths did not like me, because I was not going to feed into the bullshit. My bed side manner reflected their bed side manner towards me! It took your mom five months to figure out and convince medical providers that there was something else going on. Five months! Dr. David Walton an eye doctor in Boston Massachusetts examined your eyes for 6 hours, looked at us and said...
“Your son is blind, I'm suprised at how well he is doing. your son has Zellweger Syndrome, he will not make it past a year, take him home, love him, there is nothing you can do to help him he is going to die.”
Let’s just say that was the longest two and half hour car ride back to Maine. Nothing had been confirmed, blood work needed to be done, and the waiting began. Or should I say, "Google Search" began ...
Peroxisomal Biogenesis Disorder (PBD), also known as Zellweger Spectrum Disorder, is a rare, genetic, metabolic, terminal condition affecting all major systems of the body. Children with PBD-ZSD commonly exhibit senorineural hearing hoss, vision loss, hypotonia )low muscle tone), seizures, developmental delay, liver and kidney issues, problems with bone formation, feeding issues, and adrenal insufficiency.
November 2012 … you and I were home together... your dad was at work and going straight from work to men’s league basketball. It was six thirty at night and the hospital was calling me. I picked up and Dr. Blumenthal your primary care doctor was on the phone. I could tell already that he had the results from the blood work.
“I’m so sorry to call you this late, but I knew that you would want these results as soon as I had them in my hands. Mrs. Duquette... I’m so sorry to have to tell you this but... the blood work came back positive for Zellweger Syndrome.”
I was completely numb. Body, mind, and soul numb. You were laying on the coach sound asleep, and I ran upstairs, shut the bedroom door and lost it. Unable to breath, unable to process thoughts, or my emotions, and it hit me Riley… I was going to loose some day in my life time my first and only true love. A feeling that no one can truly understand, a feeling that lives with you every single day, crosses your mind at the worst times, lives in your dreams, and until it happens I know that this feeling will never subside. Once you are gone, then the grieving of your absence will take over.
Now it is my turn to get you through a life time of daily struggles.
Riley’s little steps I will call it!
Riley each day you bring me light, each day we discover something new together, each day I try to give you the strength to explore outside of our reach together. Each day is a new day, and as your steps may be small, they are the biggest steps in everyone’s heart that meets you, and encounters you for the first time. None of us know how long you will be here, and we all hope you out live us all!
Riley I will fight to protect you and give you what it is that you deserve. You have taught me to value things in a different light, prioritize things in a different light. You have given me a voice that I did not know that I had. I can’t remember the last time I did something for myself, and I can’t remember the last time that I truly cared about that. You rely on your care taker. You rely on us expanding your little world of limited lights, limited sound, and limited mobility. I can’t imagine how that would feel, but I put myself in your shoes every day, and trust me I know they are big shoes to fill.
I love you Riley Robert. I love you more and more each day, I can’t imagine not being able to hear your laugh, look into your bright blue eyes, smell your skin, and cuddle you all over. I won’t give up, I will be your “protector” until the end, and I promise that I will never loose site of the true meaning of love, because you have given it to me forever.
This year of your life was a crazy one. Mom and dad are no longer together. You are living primarily in New Hampshire. You are now receiving the best medical care you have ever received at Dartmouth Hitchcock Hospital with a care team of three doctors that have worked with children just like you that have unfortunately already passed away. Riley you have had two major surgeris in one year. You had Cochlear Implant surgery on July 9th, and you had Gastrostomy surgery on December 4th. Without your hearing devices you are given silence, without any light you live in darkness, and without someone to move you ... you would get no where. Riley you are the smartest person I know, given all your limitations, given all that you have to go through, you still manange to have everyone that comes into contact with you wrapped around their fingers. You are a gift to all!
You are thriving and making gains in places that I never thought possible. Taking steps in your walker with limited support from us. Standing with your braces on for three to six minutes at a time while playing with toys. Your following high contrast things up to six feet away. You are exploring new toys that dont light up and dont make sounds. You still love to play the piano and that one note that you play over and over and over again is the prittiest sounding note I have ever heard. You are showing us all up, and I’m so proud of you!
I’m hoping that this year I can provide to you what I have the last two years, and that is raising enough money to reconnect with our GFPD family (Global Foundation for Peroxisomal Disorder).
This is a time where families from all over the world with children suffering from the same diagnosis as Riley get together to learn about new research that is being done. Past trial experiments that have been conducted, a time for the specialists to take a look at Riley and the other children. It is also a time for parents to grieve the loss of their little one and the daily struggles that we are all going through with our little ones that are still here.
The Global Foundation for Peroxisomal Disorder is holding their conference in Nebraska from July 17th through July 21st.
Any help that you are willing to give is greatly appreciated!
Having the ability to reconnect with these families and their children, gives me the feeling of comfort. As alone as this journey feels daily and even more so now as a single mom with two kids, given the opportunity to reconnect is a gift.
Thank you for reading just a short version of Riley’s Little Steps . . .
Karly
For more information on Peroxisomal Biogenesis Disorder please vist the below website !
http://www.thegfpd.org/
Organizer
Karly Lindgren
Organizer
Grantham, NH