Life is so hard. Given. We all know that. What is so hard is the continual day after day. Moment after moment. One disappointment and trial after the next. Some days, no matter how hard I try or how much I beg for peace and comfort, I still feel isolated in this body and house of mine.
I am trapped. Trapped inside a house with complete reliance on others for delivery and help. I cannot just run to the store on a whim. I can't take my son to the ER if he gets hurt. There is no last minutes. All must be calculated and planned out precisely. Life is no longer spontaneous even to the just let's run to QT or Walmart or the movies or to a friends. No. Everyday things are not possible and I live trapped in a world dependent on others for freedom.
I am trapped. Inside a body that no longer does what it is supposed to. I constantly battle how much and of what activities will take me down. Doing the dishes means I cannot read with Hayden. A load of laundry requires me half of the time losing consciousness due to bending. Shaving my legs and washing my hair in the same shower...impossible. I chose between reading with Hayden or playing a game. Or between eating and walking. Nothing in my life is spontaneous...not even eating a simple apple. It all has to be calculated and planned. Any deviation and I lose consciousness. Even letting the dogs out to go to the bathroom could mean rest of the day flat in bed if the sun hits my body. My spirit is trapped in a frail and disease ridden body.
I am trapped. I am trapped by the lack of money. Not just tight or no extras but trapped with less coming in than going out. Trapped by th inability to pay our bills. We have cut everything from home phones to cable, cut every extra and trimmed on utilities and renegotiated car insurance. We budget low cost food and are ao grateful all three of us really like ramen. We are confined by knowing that no matter what we do it is never enough.
I am trapped. Trapped by the confines of doctors and medicines that I need to help me get well and the lack of money thereof. I am strapped to do the things that I know keep my body somewhat going. Without Dr.Shiflet and Q96 vitamins and frankincense to control seizures, I struggle. I laugh at the thought of the doctors telling me weekly massage would help to overcome the inability of my leg to move without so much effort. My hands are tied to seek out treatments that may save my life. It does not matter that we have insurance. It isn't enough.
I am trapped. I qualify for disability in so many areas but am denied because my disease is so rare that it is not on the list. My limitations and abilities are strong. I cannot stand for more than a few minutes without passing out. I see the sun, I have a seizure. I cannot sit with my legs down or blood clots develop. My kidneys do not filter without help. I cannot walk and digest at the same time. I must sit for 2 hours after I eat each time or I vomit. I hurt. I am consumed with pain and throbbing sensations. I am trapped by the inability to get the financial help I need to help us survive.
I am trapped. I cannot work. I have tried. I have failed. I struggle with memory. I struggle with walking. The pain is intense. The complications and side effects are magnificent. I need to work. We desperately need money. But I physically am unable. I feel so guilty yet I can't do anything about it. I feel trapped by my desire to help my family out and my inability to work.
I've been lucky. Most of my life I have had the means to provide for all my needs and most wants. Life was within my reach. I don't say this for pity or help. Just to raise my voice in understanding. To say that those who struggle are not failures or worthless. I will testify that struggling to figure it out each month. Praying and pleading that Hayden has what he needs. Praying we can afford to have a roof over our heads another month and food to eat and the medications we need is all consuming. I feel so much for those struggling. I have empathy to an entirely new level.
And yet. The blessings are so prevalent. It's easy to see he Savior's hand in our lives when we rely on Him for all. I trust that if I need a ride, He will send one. I trust that I will be able to feed Hayden each day even when I am scared the food will run out. I am so blessed that miracles occur when I am unsure how we will make it the next month. I am grateful to see how my Savior takes care of me.
Most often it isn't in the ways I would expect. I see my Savior meet my needs in ways that point that it was Him that answered my prayer. Somedays I get scared and overwhelmed. Will I fall? Will I cause Hayden to go without the necessities of life so vital in his youth? Will I scar him? Yet my Savior answers the call and provides ways for my survival. I am given enough.
Cupcakes yesterday were my answer for this month's dilemma. With less than $30 to our names and bills everywhere and food scarce, I was trembling inside and praying and pleading for help and guidance. Jodi called feeling inspired to make cupcakes. I know she thought it was for saving for a treatment or further transplants. Little did she know it would be utilized to get the medications I so desperately need and provide us with much life sustaining nutrients to feed our bodies.
Suzi showed up last night with dinner for us. Lisa invited us over for breakfast. More came to our rescue. My dad took us to dinner on Friday night. Many donated. Many helped. We are grateful beyond earthly words.
The generosity and kindness of those around me astound me. The ways the Savior answers my pleas for help and guidance are answered. I know He teaches me faith and waiting patiently upon The Lord. I have learned His ways are not my ways. But I am learning to align myself to His will. I trust that He will not let me fall completely. Yes. I will stumble. I will trip. I may crawl. But my Savior will lift me and send me aid. He will rescue me and my family. Until then....we will wait patiently upon The Lord. And we are ao grateful for my sweet sister and Lisa and Katie making cupcakes yesterday. I'm grateful for those that purchased the cupcakes. I'm so grateful for those that sacrificed for me and my family.
Cupcakes to me represent hope and help and love and answers. They are the light that helps me to walk and know that I truly do not walk alone.
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