I woke today to the familiar gray in my bedroom, the type that ushers in snow. I opened my eyes fully and checked my phone as always and had received two texts confirming that it was, indeed, a glorious sight outside. Currently the house is quiet. Mabel is still sleeping and Braden is bathing while Nora stayed at my mom's. The quiet of our house on a snowy morning brings back memories that are both beautiful and lonely.
For the past couple of winters I have definitely used this time of solitude to go inside of myself and nestle there. I have found inside these walls a harbor of rest and also of torment. I remember spending my days in complete mental exhaustion, questioning everything down to the very bones with which I was structured. I wrestled with God, light, love, darkness, touch, truth, and anything else that would knock on the door to my mind.
I was proud of myself in the deepest of my grief.
I felt like for the first time in my life I had allowed myself the opportunity to be selfish; in order to heal and in order to grow. I knew that it was something I was going to have to walk through so that I could come out alive. And not just alive but living.
In a sense, or many, my grief empowered me. It gave me permission to think about myself, my life, my choices, my surroundings and everything that needed to be deeply thought about. It was a time that liberated my previous thinking and catapulted my current self into exactly who I was created to be.
For many months, probably almost a year, I thought that the grief itself was making me lonely. Some of that is true but I realize now more than ever that it was the lack of understanding surrounding my grief inside this home [and namely my marriage] that created the loneliness. I think it's safe to say that in any relationship when one person is hurting so deeply and the other cannot fully understand the depth of those emotions, there will be a drastic separation that occurs. It's inevitable to a certain degree. But I believe now, more than ever, that when someone you love is grieving, if there is simply an effort to try and understand their basic feelings, you will succeed at walking through that with them in a healthy manner.
Living with someone every day and watching them grieve so intensely is a painful experience. I know because I watched my mom do this after her brother died unexpectedly and then again just months later when my Nanny, her mother, passed away. Something changed in my mom very drastically, so much so that it was evident right away. But there was a level of understanding and empathy among the people who loved her the most.
We had to not only let her grieve for as long as she needed to, but we needed to accept who she was now; changed and different.
When someone in your life is living the grief process there can no longer be an ounce of expectation or selfishness. Instead there must be compassion, patience, gentleness, concern, empathy and grace.
So much grace.
---
I realized over the last several days that grief is still very much on the surface of who I am. It can be so easily tapped into now or it can be quietly ushered away. I have a little more control over my grieving emotions and can sometimes choose when to tap into the sadness, anger, bitterness or even the questions and doubt. I walked through a very natural grief process both before and after Mabel's diagnosis and am stronger because of it.
As the snow falls outside today I realize that even in a house alone and quiet, I am so much less lonely than I was last winter and even the two before that. I know now that it is because I have the freedom to grieve, grow, nourish, and nurture myself in the ways that are needed for me to be ok without the expectations that I will ever be the same person again.
As with all grief, there is a distinct before and after self in this process.
Right now I can clearly see [almost physically] a difference before diagnosis and after.
One day I will be able to think about and notably speak of myself before Mabel's death and after.
It's just what happens. It is what gives meaning and truth to the situation or person in which we are so desperately grieving. It's necessary.
The people in my life right now have either known me all along and really stuck with me through my most torturous moments in this process or they didn't know me before Mabel's diagnosis.
Those who curled up with me on the kitchen floor more times than I can count and heard the 'Mabel's going to die' cry on a weekly basis are saints. They are absolutely the greatest friends and support that a human being can have. And those who didn't know me before knowing Mabel was dying are also saints because they have allowed me the freedom in knowing that they accept me right now with all of this muck and noise and they will probably just wade the waters with me as the tide rolls in because they know no different.
The people who are no longer with me in this journey walked away because it was too heavy. The burden was too much to bare. For some the burden was Mabel and the reality of her evident suffering and the idea of her impending death. But for some it was that fact that I changed and I could no longer accommodate their needs. That is the truth.
And I no longer care.
If I couldn't grieve the life that I thought my child would have, the mother that I thought I was going to get to be, the diagnosis that changed everything and inevitably the death of my daughter in a healthy way...
If I couldn't tap into myself for a little while, scale back from giving to everyone else's needs around me, plug into my home and my children more than ever...
If I couldn't do those things without you walking away then you were not cut out for the long haul of this life with me.
Because we are still having some really good days.
They are guaranteed to get much longer, and much more volatile. There will be choking, and seizing. Mabel will forget to swallow, her eyes may no longer glimmer the way that they do now. She may lose more weight, exposing her bones far greater than they are lately, which seems impossible. She will probably stop moving altogether causing her to look sedated when she is not. The Dr's predict that she will be vegetative before death. There will be crying and screaming. There will be name calling and hurtful things spoken. There will be anger and all sorts of emotions that don't seem Godly or acceptable.
I will forget birthdays and stop returning phone calls. I will not respond to others when they speak to me. I will cry more than I laugh. I will probably lose interest in the things and people that I love. I will be sad and hateful and forgetful and downright awful at times, in the days to come.
I'm sure of it because that is what grief does.
It changes you.
But in those awful days to come, I will also find a new and deeper gratitude for those around me. I will appreciate them more than I ever have. They will look at me, not with pity, but with a knowing and it will be well with them. I will feel confident and comfortable in their ability to stand by my side in the midst of utter and despicable heartache without feeling the need to flee and distinguish every trace of a friendship or relationship with me.
No. Not these people who are here now. They are in it for the long haul. They have proven it time and time again and they are remarkable. They are deserving of far more than I feel that I will ever be able to give them and yet, they continue to show up for me-from the smallest to the grandest of ways. They know it means everything to me and whether I can adequately thank them or recognize them is neither here nor there.
It's enough for them.
It doesn't sound pleasant and I know that the people who love me are not looking forward to the next phase of this journey. But I also know that they understand it, accept it and are preparing for it alongside me. Because they love me, they are absolutely ready to do whatever it takes to stand by my side and get me through.
This life that I lead is not a show.
It is not about what I can or can't do for others around me. It is about what I can do for these children and how I can better share this story so that one day Mabel's disease, and diseases like it will be eradicated. So that one day mother's will not have to grieve the upcoming death of their precious and beautiful child; the child who lays right on her chest and is breathing, haunting her with each inhale and exhale. One day, I pray that mother's won't have to feel guilty for grieving, wondering if it was the cause of her lost marriage or many friendships. Shame on those thoughts and shame on those actions. That is ridiculous and preposterous. It is utterly disgraceful that a mother who so desperately and deeply loves her child should feel concerned about those simple things-things that should be guaranteed, especially in a time of such despair.
But they never truly are.
I suppose that the first sight of snow this morning reminded me of all that is supposed to be new. And in turn, it reminded me of all that used to be.
If you are grieving, what I want you to know is that it is ok. All of it.
Whatever you gain or lose in the process was supposed to be.
It's all worth it and no matter how it feels right now, just let it be.
Just go with it.
It is what it is.
And it's going to be ok.
One day.
Near or Far.
Not ever the same--but ok.
It really will be.
And self, if you are reading this after Mabel is gone, remember it.
Read it out loud and think about this exact moment with the snow falling and your home quiet.
You are ok and you will be ok again.
There is a time for everything and in this grief, you are learning exactly what that means.
---
"For everything there is a season, and a time for every matter.
a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
a time to kill, and a time to heal;
a time to break down, and a time to build up;
a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
a time to cast away stones, and a time to gather stones together;
a time to embrace, and a time to refrain from embracing;
a time to seek, and a time to lose;
a time to keep, and a time to cast away;
a time to tear, and a time to sew;
a time to keep silence, and a time to speak;
a time to love, and a time to hate;
a time for war, and a time for peace."
Ecc. 3:1-8
For the past couple of winters I have definitely used this time of solitude to go inside of myself and nestle there. I have found inside these walls a harbor of rest and also of torment. I remember spending my days in complete mental exhaustion, questioning everything down to the very bones with which I was structured. I wrestled with God, light, love, darkness, touch, truth, and anything else that would knock on the door to my mind.
I was proud of myself in the deepest of my grief.
I felt like for the first time in my life I had allowed myself the opportunity to be selfish; in order to heal and in order to grow. I knew that it was something I was going to have to walk through so that I could come out alive. And not just alive but living.
In a sense, or many, my grief empowered me. It gave me permission to think about myself, my life, my choices, my surroundings and everything that needed to be deeply thought about. It was a time that liberated my previous thinking and catapulted my current self into exactly who I was created to be.
For many months, probably almost a year, I thought that the grief itself was making me lonely. Some of that is true but I realize now more than ever that it was the lack of understanding surrounding my grief inside this home [and namely my marriage] that created the loneliness. I think it's safe to say that in any relationship when one person is hurting so deeply and the other cannot fully understand the depth of those emotions, there will be a drastic separation that occurs. It's inevitable to a certain degree. But I believe now, more than ever, that when someone you love is grieving, if there is simply an effort to try and understand their basic feelings, you will succeed at walking through that with them in a healthy manner.
Living with someone every day and watching them grieve so intensely is a painful experience. I know because I watched my mom do this after her brother died unexpectedly and then again just months later when my Nanny, her mother, passed away. Something changed in my mom very drastically, so much so that it was evident right away. But there was a level of understanding and empathy among the people who loved her the most.
We had to not only let her grieve for as long as she needed to, but we needed to accept who she was now; changed and different.
When someone in your life is living the grief process there can no longer be an ounce of expectation or selfishness. Instead there must be compassion, patience, gentleness, concern, empathy and grace.
So much grace.
---
I realized over the last several days that grief is still very much on the surface of who I am. It can be so easily tapped into now or it can be quietly ushered away. I have a little more control over my grieving emotions and can sometimes choose when to tap into the sadness, anger, bitterness or even the questions and doubt. I walked through a very natural grief process both before and after Mabel's diagnosis and am stronger because of it.
As the snow falls outside today I realize that even in a house alone and quiet, I am so much less lonely than I was last winter and even the two before that. I know now that it is because I have the freedom to grieve, grow, nourish, and nurture myself in the ways that are needed for me to be ok without the expectations that I will ever be the same person again.
As with all grief, there is a distinct before and after self in this process.
Right now I can clearly see [almost physically] a difference before diagnosis and after.
One day I will be able to think about and notably speak of myself before Mabel's death and after.
It's just what happens. It is what gives meaning and truth to the situation or person in which we are so desperately grieving. It's necessary.
The people in my life right now have either known me all along and really stuck with me through my most torturous moments in this process or they didn't know me before Mabel's diagnosis.
Those who curled up with me on the kitchen floor more times than I can count and heard the 'Mabel's going to die' cry on a weekly basis are saints. They are absolutely the greatest friends and support that a human being can have. And those who didn't know me before knowing Mabel was dying are also saints because they have allowed me the freedom in knowing that they accept me right now with all of this muck and noise and they will probably just wade the waters with me as the tide rolls in because they know no different.
The people who are no longer with me in this journey walked away because it was too heavy. The burden was too much to bare. For some the burden was Mabel and the reality of her evident suffering and the idea of her impending death. But for some it was that fact that I changed and I could no longer accommodate their needs. That is the truth.
And I no longer care.
If I couldn't grieve the life that I thought my child would have, the mother that I thought I was going to get to be, the diagnosis that changed everything and inevitably the death of my daughter in a healthy way...
If I couldn't tap into myself for a little while, scale back from giving to everyone else's needs around me, plug into my home and my children more than ever...
If I couldn't do those things without you walking away then you were not cut out for the long haul of this life with me.
Because we are still having some really good days.
They are guaranteed to get much longer, and much more volatile. There will be choking, and seizing. Mabel will forget to swallow, her eyes may no longer glimmer the way that they do now. She may lose more weight, exposing her bones far greater than they are lately, which seems impossible. She will probably stop moving altogether causing her to look sedated when she is not. The Dr's predict that she will be vegetative before death. There will be crying and screaming. There will be name calling and hurtful things spoken. There will be anger and all sorts of emotions that don't seem Godly or acceptable.
I will forget birthdays and stop returning phone calls. I will not respond to others when they speak to me. I will cry more than I laugh. I will probably lose interest in the things and people that I love. I will be sad and hateful and forgetful and downright awful at times, in the days to come.
I'm sure of it because that is what grief does.
It changes you.
But in those awful days to come, I will also find a new and deeper gratitude for those around me. I will appreciate them more than I ever have. They will look at me, not with pity, but with a knowing and it will be well with them. I will feel confident and comfortable in their ability to stand by my side in the midst of utter and despicable heartache without feeling the need to flee and distinguish every trace of a friendship or relationship with me.
No. Not these people who are here now. They are in it for the long haul. They have proven it time and time again and they are remarkable. They are deserving of far more than I feel that I will ever be able to give them and yet, they continue to show up for me-from the smallest to the grandest of ways. They know it means everything to me and whether I can adequately thank them or recognize them is neither here nor there.
It's enough for them.
It doesn't sound pleasant and I know that the people who love me are not looking forward to the next phase of this journey. But I also know that they understand it, accept it and are preparing for it alongside me. Because they love me, they are absolutely ready to do whatever it takes to stand by my side and get me through.
This life that I lead is not a show.
It is not about what I can or can't do for others around me. It is about what I can do for these children and how I can better share this story so that one day Mabel's disease, and diseases like it will be eradicated. So that one day mother's will not have to grieve the upcoming death of their precious and beautiful child; the child who lays right on her chest and is breathing, haunting her with each inhale and exhale. One day, I pray that mother's won't have to feel guilty for grieving, wondering if it was the cause of her lost marriage or many friendships. Shame on those thoughts and shame on those actions. That is ridiculous and preposterous. It is utterly disgraceful that a mother who so desperately and deeply loves her child should feel concerned about those simple things-things that should be guaranteed, especially in a time of such despair.
But they never truly are.
I suppose that the first sight of snow this morning reminded me of all that is supposed to be new. And in turn, it reminded me of all that used to be.
If you are grieving, what I want you to know is that it is ok. All of it.
Whatever you gain or lose in the process was supposed to be.
It's all worth it and no matter how it feels right now, just let it be.
Just go with it.
It is what it is.
And it's going to be ok.
One day.
Near or Far.
Not ever the same--but ok.
It really will be.
And self, if you are reading this after Mabel is gone, remember it.
Read it out loud and think about this exact moment with the snow falling and your home quiet.
You are ok and you will be ok again.
There is a time for everything and in this grief, you are learning exactly what that means.
---
"For everything there is a season, and a time for every matter.
a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
a time to kill, and a time to heal;
a time to break down, and a time to build up;
a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
a time to cast away stones, and a time to gather stones together;
a time to embrace, and a time to refrain from embracing;
a time to seek, and a time to lose;
a time to keep, and a time to cast away;
a time to tear, and a time to sew;
a time to keep silence, and a time to speak;
a time to love, and a time to hate;
a time for war, and a time for peace."
Ecc. 3:1-8
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