May 4

May 4 The Curse That Cannot Be Reversed

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Amy's Adventures

Wednesday I introduced you all to an organization by the name of Hope's Seed. If you missed that post you can catch it here: https://worthyheart.squarespace.com/blog/2018/neighbors-friends-hope What I did not tell you was the back story to how Hope's Seed came about. It is a pretty powerful story, one that I am so glad I responded to the founder's request and learned more about why she started this organization. I asked Shelley, the founder, if she would like to share her story and she was so gracious and wrote her story as to why she does what she does. Take a minute and read it. You might see how blessed you are or you might see you are not alone. Whichever shoe you are wearing, you are loved!

A mother's love is instinctual, unconditional, and forever.

“Shelley and Zoe’s story”

I never intended to be a parent of a special needs child. And though I had hopes of the fairy tale family where everyone breathed on their own, milestones were met with ease; I soon realized that I was just not meant to live in a perfect castle, high on a hill, while those below thought my life was something more “perfect” than it was.

I know that this typical world that looks at the differently abled as broken may try to tell you they pity you, but I want you to know that our life is beautifully chaotic—there isn’t anything damaged about this road that we, us the special needs parents have been asked to walk.

Perhaps we are nontraditional, at times scary, and possibly sometimes, it feels as if we are alone, but there is nothing about our life that is broken.

I see now that this was the journey that some of us were meant to walk.

I would never have thought my children would grow up thinking that trauma was a routine, instead of something you read about in a magazine,

Perhaps if I can show you through my words that sometimes this special needs road isn’t easy—and that the first step is always to learn how to cope—then maybe you will know more than I did and make choices that are founded in greater awareness and courage.

I didn’t know how little I knew about life and myself when I began my journey of special needs parenting, but time did a beautiful job of teaching me.

I know that sometimes it’s hard just being confined at home, only going out to doctor appointments, because your child is too medically fragile to just go out for ice cream, There is hope, and there is always a way to learn the joy of this new normal way of life. Yes, I say new normal, because this life that you are being asked to walk will turn into a normal life, a different one then you are used to, but you're new normal.

You are enough; you are doing the best you can, I know that you still want to do more. However, you have to realize your good enough, is good enough.

When you tell me that you can't-do this it is too much, I understand, I have driven on the highway, many times with tears sliding down my cheek because I honestly thought I couldn't do this, just as much as you have. I can’t say that it is easy, I am saying you can do this.

But I do know that I was given this child who does not breathe for a reason, and you were given your differently abled child for a purpose.

For now, all I can do is love you, and give you hope to know you are not alone and you are strong enough to do this.

To say that your new normal is beautifully chaotic and messy implies that your life is hard, but it is has created flowers where there were dry and barren fields.

The reality of this journey is we don't know the outcome. Will, your child live, will your child be able to have some semblance of a normal life, will your child have someone other than you to want them, to love them, or will you be able to do it alone. The answer is I just don't know. I have found that staying in the present and dealing with the day to day and not dwelling on the what-ifs or maybes of what the future brings is the way to help to take some of the anxiety of what the future holds away. It is hard dear hearts, not to worry about what is coming around the next corner, staying grounded in the present is key to calming the storm inside of our hearts.

I know that what I say doesn’t mean anything if I am not willing to do the hard work to back it up with action. I struggle with what the future holds, when I know what the future will bring, more ICU stays, more people not understanding, more people wanting to pity the journey that we walk.

What good would I be to you if write you these love notes about finding, loving yourself, following your heart and all of the magic that this life of parenting a special needs child is if I wasn’t willing to follow my advice?

The truth is, my loves, we stumble over this road, we make mistakes, we learn lessons, and we get up the next day and do it all again.

If I hadn’t followed my heart and decided that I wanted my child not just to live, but have a life worth living to be the greatest example to both of my children, to show grace and fortitude, to advocate for them, to pave away, to tell them it doesn't matter if you can't breathe on your own, cannot talk, walk, eat by mouth, you were put on this earth to teach us what life is really about, then I also wouldn’t be the mother that they truly needed me to be.

Without this road that I have been asked to walk, I wouldn’t be the type of women who would have amazing children who were differently able that will one day change this world.

My goal from the start has been to raise amazing children; this did not change because one of them was born not knowing how to breathe. I never intended to keep watch over them teaching them, their ABCs while they learn how to best blend into society so that one day they might get a mortgage, and an IRA and find themselves settled down but empty.

I intended for them to grow up to be people with soul and depth.

People who have vision and ambition who know they will have to work through blood and sweat to get the life they want and deserve, breathing on their own or not.

People who follow their hearts no matter where it leads and who possess the courage to help others who are differently abled to do the same.

I wanted my children to be game-changers and status quo destroyers. This is what our special children were born to do. No, they might not be in the boardroom, behind a desk or political office they were born for greater things.

I first had to become this type of woman because of walking this journey.

So, no my darlings we do not have broken children, it was us who were broken before we had them and were able to learn what truly mattered.

Brokenness begets gratitude for the little things, the first step of a legally blind child, the first food a tube fed child eats by mouth, the first word a trached child forms, the first day you drive alone with your vent dependent child, all these things that unbroken parents never think of. You just feel the rush of gratitude for the ordinary, the new normal, the only normal you now experience. It makes you who you are, strong, yet bendable, because you know the wind will blow hard again, but you bounce back. Every time.

My story like all good stories is a story of hope, failure, brokenness, elation, beauty, and life.

My darling Zoe was born just like every other perfect child. She came out kicking and screaming, the nurses beamed, the father overjoyed, and I laid on my birthing bed glistening with the dew of a hard-won victory.

Even Shakespeare could not have foreshadowed the events that began to unravel like a ball of un-kept yarn as soon as Zoe's head was placed in the nursery.

You always hear the greatest stories of milky laced trauma that start with a dramatic birth but alas Zoe had a perfect peaceful birth, yet like all good suspense novels, it is not what is obvious that stirs the plot but the silent nuances that sneak in like a thief in the night.

Zoe just simply stopped breathing, there was no struggle she just closed her perfectly made doe eyes pursed out her bow like lips, went to sleep in the nursery of the hospital and stopped breathing.

There was no fanfare, no blue to tinge her lips, not even a tear.

The nurse noticed something off and went to pick her up, and Zoe took a deep cleansing breath opened her eyes yawned, stretched and wiggled like any other newborn. The nurse shook her head laid Zoe back down and walked off. This seemed to be the beat of Scottish tattoo Zoe played.

Stop breathing, the nurse picks her up Zoe takes a breath, and the snowflake pattern begins a new.

The doctors moved her up to the Neonatal Intensive Care Unit all confused why this perfectly perfect newborn would stop breathing with not even a struggle.

Zoe played this game of cat and mouse for 6 months, 6 months of Zoe not breathing when she slept, a tube was placed in the small of her neck so a machine could whirl and whistle air into Zoe's while we all held our breath watching and waiting for Zoe to take a breath on her own. For six months we waited winter turned into spring and spring into summer.

At last the doctors had found a name for why Zoe would not breathe, like all good fairy tales one needs just a simple curse to make the story come to completion.

A curse is what she had, to be precise Zoe had " Ondine's Curse" the curse of forgetting to breathe.

Hearing words that your daughter has a curse upon her, and you not knowing what that curse could be, you sit there in that ICU holding your cursed baby and weaved steadily within her, and I a resolve to weave a web of a life with little fear and only beautiful joy. The doctors gave us no hope; the nurses gave me a pearl garland to wind her head, to lay her on a velvety bed and let her fly back to heaven like a fairy princess. The curse can never be reversed but I did know you could live with a curse I had read about all kinds of fairy tales when I was small. You should always believe in fairy tales not because curses can be reversed, but because curses can turn your scars into threads of silvery beauty. The Doctors gave me one year with Zoe, Zoe has given me 17 years.

Shelley

To learn more about Shelley's organization go to www.hopesseed.com

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Hi.

May 4 The Curse That Cannot Be Reversed

I know that this typical world that looks at the differently abled as broken may try to tell you they pity you, but I want you to know that our life is beautifully chaotic—there isn’t anything damaged about this road that we, us the special needs parents have been asked to walk.

Perhaps we are nontraditional, at times scary, and possibly sometimes, it feels as if we are alone, but there is nothing about our life that is broken.

I see now that this was the journey that some of us were meant to walk.

I would never have thought my children would grow up thinking that trauma was a routine, instead of something you read about in a magazine,

Perhaps if I can show you through my words that sometimes this special needs road isn’t easy—and that the first step is always to learn how to cope—then maybe you will know more than I did and make choices that are founded in greater awareness and courage.

I didn’t know how little I knew about life and myself when I began my journey of special needs parenting, but time did a beautiful job of teaching me.

You are enough; you are doing the best you can, I know that you still want to do more. However, you have to realize your good enough, is good enough.

When you tell me that you can't-do this it is too much, I understand, I have driven on the highway, many times with tears sliding down my cheek because I honestly thought I couldn't do this, just as much as you have. I can’t say that it is easy, I am saying you can do this.

But I do know that I was given this child who does not breathe for a reason, and you were given your differently abled child for a purpose.

For now, all I can do is love you, and give you hope to know you are not alone and you are strong enough to do this.

To say that your new normal is beautifully chaotic and messy implies that your life is hard, but it is has created flowers where there were dry and barren fields.

I know that what I say doesn’t mean anything if I am not willing to do the hard work to back it up with action. I struggle with what the future holds, when I know what the future will bring, more ICU stays, more people not understanding, more people wanting to pity the journey that we walk.

What good would I be to you if write you these love notes about finding, loving yourself, following your heart and all of the magic that this life of parenting a special needs child is if I wasn’t willing to follow my advice?

The truth is, my loves, we stumble over this road, we make mistakes, we learn lessons, and we get up the next day and do it all again.

Without this road that I have been asked to walk, I wouldn’t be the type of women who would have amazing children who were differently able that will one day change this world.

I intended for them to grow up to be people with soul and depth.

People who have vision and ambition who know they will have to work through blood and sweat to get the life they want and deserve, breathing on their own or not.

People who follow their hearts no matter where it leads and who possess the courage to help others who are differently abled to do the same.

I wanted my children to be game-changers and status quo destroyers. This is what our special children were born to do. No, they might not be in the boardroom, behind a desk or political office they were born for greater things.

I first had to become this type of woman because of walking this journey.

So, no my darlings we do not have broken children, it was us who were broken before we had them and were able to learn what truly mattered.

My story like all good stories is a story of hope, failure, brokenness, elation, beauty, and life.

My darling Zoe was born just like every other perfect child. She came out kicking and screaming, the nurses beamed, the father overjoyed, and I laid on my birthing bed glistening with the dew of a hard-won victory.

Even Shakespeare could not have foreshadowed the events that began to unravel like a ball of un-kept yarn as soon as Zoe's head was placed in the nursery.

You always hear the greatest stories of milky laced trauma that start with a dramatic birth but alas Zoe had a perfect peaceful birth, yet like all good suspense novels, it is not what is obvious that stirs the plot but the silent nuances that sneak in like a thief in the night.

Zoe just simply stopped breathing, there was no struggle she just closed her perfectly made doe eyes pursed out her bow like lips, went to sleep in the nursery of the hospital and stopped breathing.

There was no fanfare, no blue to tinge her lips, not even a tear.

The nurse noticed something off and went to pick her up, and Zoe took a deep cleansing breath opened her eyes yawned, stretched and wiggled like any other newborn. The nurse shook her head laid Zoe back down and walked off. This seemed to be the beat of Scottish tattoo Zoe played.

Stop breathing, the nurse picks her up Zoe takes a breath, and the snowflake pattern begins a new.

The doctors moved her up to the Neonatal Intensive Care Unit all confused why this perfectly perfect newborn would stop breathing with not even a struggle.

At last the doctors had found a name for why Zoe would not breathe, like all good fairy tales one needs just a simple curse to make the story come to completion.

A curse is what she had, to be precise Zoe had " Ondine's Curse" the curse of forgetting to breathe.

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Hi.

May 4 The Curse That Cannot Be Reversed

I know that this typical world that looks at the differently abled as broken may try to tell you they pity you, but I want you to know that our life is beautifully chaotic—there isn’t anything damaged about this road that we, us the special needs parents have been asked to walk.

Perhaps we are nontraditional, at times scary, and possibly sometimes, it feels as if we are alone, but there is nothing about our life that is broken.

I see now that this was the journey that some of us were meant to walk.

I would never have thought my children would grow up thinking that trauma was a routine, instead of something you read about in a magazine,

Perhaps if I can show you through my words that sometimes this special needs road isn’t easy—and that the first step is always to learn how to cope—then maybe you will know more than I did and make choices that are founded in greater awareness and courage.

I didn’t know how little I knew about life and myself when I began my journey of special needs parenting, but time did a beautiful job of teaching me.

You are enough; you are doing the best you can, I know that you still want to do more. However, you have to realize your good enough, is good enough.

When you tell me that you can't-do this it is too much, I understand, I have driven on the highway, many times with tears sliding down my cheek because I honestly thought I couldn't do this, just as much as you have. I can’t say that it is easy, I am saying you can do this.

But I do know that I was given this child who does not breathe for a reason, and you were given your differently abled child for a purpose.

For now, all I can do is love you, and give you hope to know you are not alone and you are strong enough to do this.

To say that your new normal is beautifully chaotic and messy implies that your life is hard, but it is has created flowers where there were dry and barren fields.

I know that what I say doesn’t mean anything if I am not willing to do the hard work to back it up with action. I struggle with what the future holds, when I know what the future will bring, more ICU stays, more people not understanding, more people wanting to pity the journey that we walk.

What good would I be to you if write you these love notes about finding, loving yourself, following your heart and all of the magic that this life of parenting a special needs child is if I wasn’t willing to follow my advice?

The truth is, my loves, we stumble over this road, we make mistakes, we learn lessons, and we get up the next day and do it all again.

Without this road that I have been asked to walk, I wouldn’t be the type of women who would have amazing children who were differently able that will one day change this world.

I intended for them to grow up to be people with soul and depth.

People who have vision and ambition who know they will have to work through blood and sweat to get the life they want and deserve, breathing on their own or not.

People who follow their hearts no matter where it leads and who possess the courage to help others who are differently abled to do the same.

I wanted my children to be game-changers and status quo destroyers. This is what our special children were born to do. No, they might not be in the boardroom, behind a desk or political office they were born for greater things.

I first had to become this type of woman because of walking this journey.

So, no my darlings we do not have broken children, it was us who were broken before we had them and were able to learn what truly mattered.

My story like all good stories is a story of hope, failure, brokenness, elation, beauty, and life.

My darling Zoe was born just like every other perfect child. She came out kicking and screaming, the nurses beamed, the father overjoyed, and I laid on my birthing bed glistening with the dew of a hard-won victory.

Even Shakespeare could not have foreshadowed the events that began to unravel like a ball of un-kept yarn as soon as Zoe's head was placed in the nursery.

You always hear the greatest stories of milky laced trauma that start with a dramatic birth but alas Zoe had a perfect peaceful birth, yet like all good suspense novels, it is not what is obvious that stirs the plot but the silent nuances that sneak in like a thief in the night.

Zoe just simply stopped breathing, there was no struggle she just closed her perfectly made doe eyes pursed out her bow like lips, went to sleep in the nursery of the hospital and stopped breathing.

There was no fanfare, no blue to tinge her lips, not even a tear.

The nurse noticed something off and went to pick her up, and Zoe took a deep cleansing breath opened her eyes yawned, stretched and wiggled like any other newborn. The nurse shook her head laid Zoe back down and walked off. This seemed to be the beat of Scottish tattoo Zoe played.

Stop breathing, the nurse picks her up Zoe takes a breath, and the snowflake pattern begins a new.

The doctors moved her up to the Neonatal Intensive Care Unit all confused why this perfectly perfect newborn would stop breathing with not even a struggle.

At last the doctors had found a name for why Zoe would not breathe, like all good fairy tales one needs just a simple curse to make the story come to completion.

A curse is what she had, to be precise Zoe had " Ondine's Curse" the curse of forgetting to breathe.

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