"Sometimes I wonder if our journey matters to anyone. Or if I matter. I know what the Bible says so don't get preachy but the battle is real. I'm exhausted, yet so much that I, myself need to get done before painters come tomorrow. Bumping into a friend was nice today. I probably did look like a zombie.
No rest for the weary.... I'm even second guessing why I did the sleep study since my son's chiari "isn't that bad" yet was enough to cause a syrinx...... Was this exhaustion and weariness worth it? We're my tears at midnight being angry over his chiari worth it? Am I crazy?
We don't fit in any world really..... Most days I'm okay with it. Yet maybe exhaustion is talking here.
I just want to be content. Content with the constant go, go, go we have to do and often appointments alone. I want to be able to not be dragged into the drama of others expecting to not have to be the one to fix it. I want to come home from long appointments to a clean house but it's not. I'm often asked to help or do favors for everyone else yet nothing in return, or at least rare.
I want to be able to go out and have at least people who want to do things with me without expecting stuff in return. I want to be able to go to Dallas and Little Rock knowing I'll have someone I know that I can talk with that understands where I am. Most that I know that go to Dallas don't anywhere near the time we do anyway.... Their journeys are different than mine too. They have worse to face more often. They have their own buddies they coordinate appointments with."
Some days I am ticked but other days I'm exhausted and other days I'm content and honestly, I even at times fight jealousy.......... It varies which bugs me too... Goes along with the journey.... I have gotten better at just being quiet and not posting on social media, especially if I'm having a "bad" moment, yet sometimes words still spill.
It is hard to feel understood, and not alone some days... Truly.....
The next day I was doing better but did come across THIS blog. The POST I read talked about battle fatigue. Talk about a light bulb moment! I personally loved her sanity saving list. I'll be the first to say that writing is MY therapy. As if that was never obvious... :D
I loved these in particular:
"But it is difficult to incorporate rest and relaxation into a lifestyle that is accustomed to caregiver chaos. Even when life settles down for me, still there is a secret soldier that lives just beneath the surface of my cheerful persona. A warrior, ever-ready and alert, instinctively programmed to pounce into action at the slightest hint of an emergency situation, an inevitable consequence of my child's many medical issues.
In response to all of this, a booming voice of doubt inside my head hollers into my soul, questioning whether I have the strength to survive this grueling pace and emotional trauma that accompanies such a life. It is a silent and paralyzing fear that secretly gnaws at my subconscious.
I am not complaining or seeking sympathy. I am painfully aware that our situation could be much worse. I realize there are families who suffer from far greater challenges.
I am thankful every day for our good fortune.
I am also however, only human, and unable at times, to overcome this feeling of helplessness.
I believe I am suffering from a type of Special Needs Battle Fatigue.
Much like a soldier who is no longer able to withstand the sight and sounds of continuous battle, I too am experiencing a type of involuntary paralysis of sorts, a shutting down of the nervous system in response to the constant demand on the fight or flight response."
"Many parents of special-needs children place huge pressures on themselves that add to their stress. Some examples include:
- "I must give 100% to my special-needs child all the time or I am a failure as a parent."
- "I should always put the needs of my special-needs child above my own needs."
- "I should feel guilty if I take a break from my caregiving responsibilities."
Than during MOPS today, I got to hear the story of one of the ladies in our church. What a story it was. She was right on this though. Our children show us what we are capable of and that God's timetable is always the best even when we can't understand it at that time. The hope of Heaven is what to remember, not the fears and worries of today. Reminds me of listening to Live on Forever.
I would never have thought 10 years ago, almost two years into marriage that I would be where I am. Yet I know as frustrating as the journey is, I have truly no regrets. I have days where I wonder if I know what the heck I'm doing or if I'm doing right but history has shown me that at least I get answers......
I, like many of us deal with storms and rainbows all the time. A "minor" thunderstorm for me could be a hurricane for someone else and vice versa. I think much of that is how we take things in. Yet trying to handle the journey differently is sometimes harder than the journey itself!
"When the storm passes and the sun shines again, it's clear to see the damage. The heartache truly sets in as we begin a new journey." ~ Susan Guy ~
Oh so hard....
Yet another favorite song has these lyrics:
"Even though I don't know what Your plan is
I know You make beauty from these ashes....
When all is taken away, don't let my heart be changed
Let me always sing Hallelujah
When I feel afraid, don't let my hope be erased
Let me always sing Hallelujah."
Even though we all face fatigue, as hard as it is, we have to hold HOPE in that. We may feel like we are in the darkest room yet the darker it is, the easier it is to see Light.
How far away can a single candle flame be seen in darkness? If Earth were flat, or if you were standing atop a mountain surveying a larger-than-usual patch of the planet, you could perceive bright lights hundreds of miles distant. On a dark night, you could even see a candle flame flickering up to 30 mi. (48 km) away. Our eyes can see a galaxy 2.6 million light-years away. That's just our human eyes!
Darkness cannot extinguish light!
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| https://robertnash30.files.wordpress.com/2012/07/light-in-the-dark.jpg?w=300&h=225 |
I will also hold tight to my own words, which I will close today with. After almost 9 years of being a warrior for my children, I think battle fatigue is expected but also the goal is to maintain peace and sanity within myself and the immediate world around me is a must too. But maybe it really is okay just to have a time to "let it out" but also pick ourselves back up by the seam of our pants and keep walking. Oh but how hard it is also to not be so hard on ourselves! Amen?!
Yet the journey has it's good sometimes too. HERE where many of us stood united is a prime example. What a ride it is though.....
Momma
by: Carol Andrews
6/2/15
Momma, you don't know you are pregnant with me yet. You will very soon though. I just want you to know that no matter what, God made me and knows my story already. God knew who my parents would be and knew that you and daddy would be strong enough for everything that I would need.
Momma, you should know that the world is going to consider me special needs. I won't be born looking or acting like most others will. There will be trials and issues that I will face that many won't. So few will understand but those that do you will learn to cherish.
Momma, you will have many battles to face to get the care and treatment I need to thrive. God knew all of this before I was created. The love you and daddy share has to stay strong so you two can fight together for me.
Momma, I already know you love me even though you don't know what I am facing yet. God knows though. He wouldn't have given me to you if He didn't already know you could do it.
Momma, today is my birth day. I am being born today. I sense your excitement and nervousness. As I am born, I see your face for the first time as you see mine. I see your tears of joy.
Momma, I know the doctor talked to you today. I see your tears. Please don't cry because of my diagnosis, cry tears of joy because I am your special gem. Don't cry because I will show the world what I can do. Stand proud momma.
Momma, I know the world sent you to Holland instead if Italy but in Holland, there are so many joys to be found. There will be hard days but days of joy too. Don't take what people say about me or you too hard. Most don't understand.
Momma, watch me prove to the world that I shine just like everyone else, only my light that I shine is a little different but it is such a pretty color that stands out. I have a heart of gold.
Momma, so many say that I won't do this or that but watch me. I may not do it like everyone else says I should but watch me. I will stand tall and shine. Will you stand there with me with your heart beaming with pride? Will you cry happy tears instead of tears of sadness?
Momma, don't mourn because I wasn't normal. Mourn for those who refuse to understand and pray for them. Yet momma, focus on those who stand with us. Feel joy for the times where you know you aren't fighting alone.
Momma, there will be seasons where you feel alone and misunderstood. There will be seasons of pain and sadness. There will be seasons of joy and excitement too.
Momma, just remember those seasons over the years will make you stronger and grow more in your faith. Through you momma, I will see what we can do.
Momma, with God, nothing is impossible. I will prove that.
Love, your son/daughter
Blessings!
~Special Momma ~
From Rebekah's blog: I love her posts!
I have sometimes been wildly, despairingly, acutely miserable,
but through it all I still know quite certainly that just to be alive is a grand thing.
~ Agatha Christie ~
Thanks. I needed every word. God bless you and be encouraged.
ReplyDeleteYou too dear one!
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