I stormed the throne for a time, for one that I could call mine.
He saw my tears rain and blessed me with three to name.
Suddenly I was more, much more than before.
I stormed the throne with urgency, for you see I needed Him to hear me.
Storm the throne, He hears all.
Storm the throne, He catches when we fall.
I stormed the throne for them to see, I wanted them to grow in His love and mercy.
He grew them up and made them strong, that doesn't always take so long.
Now, you see, I storm His throne for me.
I storm His throne to see her face, my brokenness is welcome in this place.
Storm the throne, He hears all.
Storm the throne, He catches when we fall.
I continue to storm the throne, this is not my home.
Precious faces look to me, I storm His throne for them and for me.
I want to teach them the road to take, there are far too many that lead to heartache.
Storm the throne my blessed three, Storm the throne and wait for me.
Today is calm and that's ok. The calm before the storm or so they say.
Storm the throne, He hears all.
Storm the throne, He catches when we fall.
Wednesday, October 23, 2013
Tuesday, October 15, 2013
Just Today
Hi =) Today has been rather slow. I have Mileigh at home with me as she fights an infection in hopes that her counts hold. Her counts were elevated as she was on the up side of her nadir and I'm thankful for that. I think even as a neutropenic parent I sometimes take for granted the "normal" range and just today.
Just Today:
I wake in a fog and my attention is immediately directed to the sleeping child in the room next door. Has she rested enough? Does she have a fever? Dear Lord, please give her neutrophils.
As I peel myself from the covers I try hard to shake the pain. Pain from not moving all night, pain from injections to give me today to take care of the little blessings I get to call "mine".
I make my way across the hall and flip the light and there she sleeps...cool as a cucumber. Thank you, Lord. Thank you for holding her tight through the night. Thank you for giving her the tools to fight.
Her sister wakes first and immediately checks on her before heading to go through her check list getting ready for school.
The coffee brews, lunches are packed, teeth are brushed, and those groggy sleepy heads are beginning to fully wake. How beautiful are these bed head children of mine! She kisses her sister and tells her she hopes she feels better. She heads out to do her best and this right here is why I wake. This right here makes me thankful for Just Today. This is it! This is not just any life, not just any day, this is mine!
I pray for those who fight with less than enough. I pray for those who's tools are less than sufficient. I dream of what life with three girls would be like. I wonder what words of wisdom Joeli would have for me. I listen for the random wisdoms that define Brelan and Mileigh. I pray one day they know their beauty.
Much of this is probably completely random but this is me. This is today. This is mine. This is real. Take a minute today, a minute to feel. It might be all we get. Just Today. Be Blessed!
Just Today:
I wake in a fog and my attention is immediately directed to the sleeping child in the room next door. Has she rested enough? Does she have a fever? Dear Lord, please give her neutrophils.
As I peel myself from the covers I try hard to shake the pain. Pain from not moving all night, pain from injections to give me today to take care of the little blessings I get to call "mine".
I make my way across the hall and flip the light and there she sleeps...cool as a cucumber. Thank you, Lord. Thank you for holding her tight through the night. Thank you for giving her the tools to fight.
Her sister wakes first and immediately checks on her before heading to go through her check list getting ready for school.
The coffee brews, lunches are packed, teeth are brushed, and those groggy sleepy heads are beginning to fully wake. How beautiful are these bed head children of mine! She kisses her sister and tells her she hopes she feels better. She heads out to do her best and this right here is why I wake. This right here makes me thankful for Just Today. This is it! This is not just any life, not just any day, this is mine!
I pray for those who fight with less than enough. I pray for those who's tools are less than sufficient. I dream of what life with three girls would be like. I wonder what words of wisdom Joeli would have for me. I listen for the random wisdoms that define Brelan and Mileigh. I pray one day they know their beauty.
Much of this is probably completely random but this is me. This is today. This is mine. This is real. Take a minute today, a minute to feel. It might be all we get. Just Today. Be Blessed!
Tuesday, October 8, 2013
Hope Today
There is hope today! Hope for change, hope for awareness, hope for more. What do you hold hope for? What is the hope that compels you forward on your road in life? Often, as a neutropenic and also as a parent of a neutropenic, life becomes stagnant. We get lost in just trying to get through another day, another drop, or cold season with no illness. Praying ourselves through another school week with no extra germs. I choose hope. I choose to put my efforts into being different and maybe making some not so comfortable decisions in hope's name.
Today started as an average day. I woke Brelan and Mileigh for school. I packed lunches, fixed breakfast, started laundry, and fixed hair for two of the cutest little girls I know. As I pulled through car line I saw hope. Did you hear me?! I SAW hope! Hope was walking into school hand in hand. That's my hope, that's your hope, they're OUR hope for tomorrow. It sends my mind reeling to several projects that are still in the works. I think of their friendship...not just their blood relation. I think of my neutro friends and family. I think of the teams of people that are committed to working together all for one purpose. To be heard. To give hope. To BE hope. All for Neutropenia. All for healing. All for people.
To sit back and read or look into our lives for a minute of time leaves me feeling a bit overwhelmed. I take that as it's just bigger than me. This hope, this condition in all it's forms, this life....it's bigger. He's bigger. I think of Joeli and what she'd sound like explaining Cyclic Neutropenia to one who has never heard. I wonder what words she'd choose. I think of the attitude she'd have in regard to her own condition and in regard to the protection of her baby sister. Some say her words were stolen from her. Maybe by some definitions that's true. Not by mine. My hope is that I bring her words to life in a way that honors her. Of course I dream of the day that I can hear them come from her beautiful little self. This wasn't the way I'd planned. I knew she was a special little girl. I knew she was destined to make a difference. Guess I'd never considered the not so common avenues that task could be accomplished.
I hold tight to my God and my faith when the road seems too long. I find Hope there like no other. I see Joeli, Brelan, and Mileigh who were given to me for such a time as this. They've taught me more than I could ever dream of teaching them. He gave me hope all wrapped up in three beautiful little girls. I look forward to watching them grow and seeing them change and become who He wants them to be. I feel privileged to be witness to Brelan and Mileigh and seeing their relationship change and grow over the years. I am blessed to have watched Joeli grow for three years and five months. I find hope in knowing that one day I'll see them all together at His feet. All three of my girls.
There is hope for us. There is hope for us as people and there is hope for us as neutropenic patients. Live loud! Don't lose your hope! Be Blessed!
Today started as an average day. I woke Brelan and Mileigh for school. I packed lunches, fixed breakfast, started laundry, and fixed hair for two of the cutest little girls I know. As I pulled through car line I saw hope. Did you hear me?! I SAW hope! Hope was walking into school hand in hand. That's my hope, that's your hope, they're OUR hope for tomorrow. It sends my mind reeling to several projects that are still in the works. I think of their friendship...not just their blood relation. I think of my neutro friends and family. I think of the teams of people that are committed to working together all for one purpose. To be heard. To give hope. To BE hope. All for Neutropenia. All for healing. All for people.
To sit back and read or look into our lives for a minute of time leaves me feeling a bit overwhelmed. I take that as it's just bigger than me. This hope, this condition in all it's forms, this life....it's bigger. He's bigger. I think of Joeli and what she'd sound like explaining Cyclic Neutropenia to one who has never heard. I wonder what words she'd choose. I think of the attitude she'd have in regard to her own condition and in regard to the protection of her baby sister. Some say her words were stolen from her. Maybe by some definitions that's true. Not by mine. My hope is that I bring her words to life in a way that honors her. Of course I dream of the day that I can hear them come from her beautiful little self. This wasn't the way I'd planned. I knew she was a special little girl. I knew she was destined to make a difference. Guess I'd never considered the not so common avenues that task could be accomplished.
I hold tight to my God and my faith when the road seems too long. I find Hope there like no other. I see Joeli, Brelan, and Mileigh who were given to me for such a time as this. They've taught me more than I could ever dream of teaching them. He gave me hope all wrapped up in three beautiful little girls. I look forward to watching them grow and seeing them change and become who He wants them to be. I feel privileged to be witness to Brelan and Mileigh and seeing their relationship change and grow over the years. I am blessed to have watched Joeli grow for three years and five months. I find hope in knowing that one day I'll see them all together at His feet. All three of my girls.
There is hope for us. There is hope for us as people and there is hope for us as neutropenic patients. Live loud! Don't lose your hope! Be Blessed!
Wednesday, October 2, 2013
The Struggle
It's been a while... I'm a pretty good talker once the heat of the fire dies down some but when the flames are roaring it's a different story for me. I'm on of those "head down, one foot in front of the other" kind of people, till it's safe to look up again. I don't speak much of my own health outside of me being Cyclic. I don't want to get hung up there or for it to ever be about that. The reason I write and the reason I talk is for her song to be heard and to use that voice to fight for Mileigh and other neutropenic children everywhere. It's an outlet for me to refer back to when a fight is required.
That's all fine and good but this post will include some of my personal struggles that have occurred recently. In 2012 I was admitted for neutropenic episodes several times with an average inpatient time of one week. That's enough of looking at four walls to make anyone nuts! I despise being admitted into the hospital. It's been nearly one year since my last admission...PRAISE THE LORD! However, a couple of weeks ago I was one fever degree away from the confining lines of intravenous antibiotics and increased G-CSF. I haven't felt "right", for lack of a better word, in a while. Life and it's daily demands have always been a struggle at times. It's always required a certain degree of pushing through. Typically I feel better once I've completed whatever it was that required that push, be it a spin class, a softball game, or even the laundry on some days. Lately however, the push is nearly impossible and I do not feel better after. Tasks are left incomplete and I'm left exhausted. I don't even like typing this to be honest right now. It sparks a feeling of defeat in me like no other.
I was able to avoid the admission a couple of weeks ago with monitored counts and daily IV infusions for several days. I stayed in constant contact with my physician and he was truly a Godsend. I appreciate his respect for Neutropenia. I also appreciate his respect for me as an educated patient who knows my body. His first response was admit and air on the side of caution. I, again, despise these admissions and my temp was hovering in the "low grade" category. We talked and came up with a treatment plan that worked for both of us...I could stay home as long as I agreed to daily IV medication, rest, and constant contact with him. It worked great and I was able to allow my body to respond at home and the fever never spiked. AMEN, AMEN, AMEN! While I'm here...I do not in any way refuse admission when it's absolutely necessary. It's a fine line we, as neutropenics, walk in regard to admission. Hospitals are germy places and precautions are serious so, for us, when it's possible to treat at home we do.
Anyhow...I write this post to just put me out there a little more. Neutropenia, regardless of source, is painful and exhausting. The struggle to live a somewhat normal life often gets put aside because it isn't the point. The point is to make it and to truly live. The struggle never goes away. I choose not to focus on the struggle most of the time because it's just part of life...we all have one and I don't owe the struggle the majority of my time.
This post finds itself nearly a month after my last one. In that time I may have struggled with my health but I've also been blessed to be in contact with people who have truly encouraged me. Encouraged me in my writing, my fight, my parenting, etc... I appreciate you. I'm not sure where this road is leading and I'm uncertain of what's next for Joeli's Song but I am absolutely certain that no matter the struggle, her song will be forever heard. Thank you for blessing me! Be Blessed!
That's all fine and good but this post will include some of my personal struggles that have occurred recently. In 2012 I was admitted for neutropenic episodes several times with an average inpatient time of one week. That's enough of looking at four walls to make anyone nuts! I despise being admitted into the hospital. It's been nearly one year since my last admission...PRAISE THE LORD! However, a couple of weeks ago I was one fever degree away from the confining lines of intravenous antibiotics and increased G-CSF. I haven't felt "right", for lack of a better word, in a while. Life and it's daily demands have always been a struggle at times. It's always required a certain degree of pushing through. Typically I feel better once I've completed whatever it was that required that push, be it a spin class, a softball game, or even the laundry on some days. Lately however, the push is nearly impossible and I do not feel better after. Tasks are left incomplete and I'm left exhausted. I don't even like typing this to be honest right now. It sparks a feeling of defeat in me like no other.
I was able to avoid the admission a couple of weeks ago with monitored counts and daily IV infusions for several days. I stayed in constant contact with my physician and he was truly a Godsend. I appreciate his respect for Neutropenia. I also appreciate his respect for me as an educated patient who knows my body. His first response was admit and air on the side of caution. I, again, despise these admissions and my temp was hovering in the "low grade" category. We talked and came up with a treatment plan that worked for both of us...I could stay home as long as I agreed to daily IV medication, rest, and constant contact with him. It worked great and I was able to allow my body to respond at home and the fever never spiked. AMEN, AMEN, AMEN! While I'm here...I do not in any way refuse admission when it's absolutely necessary. It's a fine line we, as neutropenics, walk in regard to admission. Hospitals are germy places and precautions are serious so, for us, when it's possible to treat at home we do.
Anyhow...I write this post to just put me out there a little more. Neutropenia, regardless of source, is painful and exhausting. The struggle to live a somewhat normal life often gets put aside because it isn't the point. The point is to make it and to truly live. The struggle never goes away. I choose not to focus on the struggle most of the time because it's just part of life...we all have one and I don't owe the struggle the majority of my time.
This post finds itself nearly a month after my last one. In that time I may have struggled with my health but I've also been blessed to be in contact with people who have truly encouraged me. Encouraged me in my writing, my fight, my parenting, etc... I appreciate you. I'm not sure where this road is leading and I'm uncertain of what's next for Joeli's Song but I am absolutely certain that no matter the struggle, her song will be forever heard. Thank you for blessing me! Be Blessed!
Subscribe to:
Posts (Atom)