My Thoughts

[stjohn1633]

Thanks for all your encouraging comments!

I feel a bit of depression. Not more than I've ever felt before, but I feel the desire to block out everything. I want to sleep as much as possible because I'm so tired after 131 days in the hospital, worrying night and day. Watching her breathe. Listening to her breathe. I feel like sleeping is a way I can "get away". Away from worrying. But then I feel guilt. Guilt for not watching her every moment. Maybe not meeting all her needs. And heaven forbid, I might be asleep when she needs me most. I have felt these feelings before. They are similar to normal "new mom" feelings. The feelings of being overwhelmed with responsibilities and fear of failing at the most important job of your life.

I usually only post when I'm having a hard time. So, you are getting only half of myself. The worst half. The other half of me is strong, full of faith and hope. Looking forward to the future. Accepting all the circumstances. Finding the positive in every situation. I love my family. I cherish reach moment. I give myself expecting nothing in return.

I know that we can handle this with God's help and grace. Soon I will share my whole story. It's not a perfect fairy tale story. It's a story of pain and loss and fear and heartache. But we stick together. We hold on to each other close. We never give up.

 

[stjohn1633]

I think I need to journal more when I'm in a good mood, to even things out, and to remind myself that there ARE good days.

Today, the nurse brought my little one a curious George doll. She loves it .

The speech therapist put on her passy-meer valve and I could hear her jabbering all the way down the hall. She also said that it's likely that our little one will start eating more normally after we take her home.

I feel more hopeful today. I'm almost afraid to hope for better days....a better life..... Stability, but I still do. I still have hope. Yes, I have changed. But I think in many ways I have changed for the better.

How have I changed?

I am more open to question everything. I have let go of superstitions that I didn't even realize that I held before! I read the bible with a more open mind. I do not try to make it say what I believe. I try to believe what it says.

I am starting to be less and less judgmental and more and more accepting and sympathetic towards others. I realize that "my way" is not the only way or even the best way.

I feel peoples' pain.

I abhor my own vanity. I push away habitual thoughts of vanity and pride in outward appearance. I grieve when I realize my own prejudice based on a person's body, clothes, hair, face, or abilities.

I feel humility. I feel unworthy of so many gifts and cards and just everything. I accept it all because I know we need it because we need to take care of our kids. We need to make sure that they have a place to live, food to eat and all the medical care that they need.

How have I changed?

I realize that life is not all about this side of heaven. Life is mostly about eternity. Our time here is so short. Our loved ones so fragile. We hold on to a HOPE. A HOPE of eternal life. A HOPE of heaven. A HOPE of a glad reunion day. A HOPE of being together forever in a place with no more pain, no more tears, and no more sad goodbyes.

My faith has been strengthened in that hope.

The day of the fire, when my other two children came up to the hospital, I told them the truth. The truth I was taught. The truth the gives hope when we are in despair. I said, "the hospital is taking care of our baby, but she still might go to heaven." My then 4 year old replied, "it's better to go to heaven." Such wonderful and beautiful faith of a child! Such amazing hope!

Faith is the substance of things hoped for and the evidence of things not seen.

I do not understand this, but I believe it.

 

[stjohn1633]

Reading that first post brought tears to my eyes. I had forgotten that pain that I felt. Thank you God for bringing me so far! After we suffer so deeply and painfully, normal life is so peaceful and sweet. Normal days are beautiful. We can look at our loved ones and cherish them. Love them. Hold them. Kiss them.

Yes, I still get overwhelmed. I'm overwhelmed with 8-10 appointments a week at the hospital for my 2 year old. I'm overwhelmed with working nights and weekends. I'm overwhelmed because my husband lives in chronic pain. I'm overwhelmed because my brother in law just had a liver transplant. I'm overwhelmed because we live in a camper because our house burned down. I'm overwhelmed because we never have enough money.

BUT....

I am millions and billions of times better than I was last year. Because all my babies are home with me. Because God has given me another chance. Because I got help when I needed it.

My therapist reduced my visits to every two weeks because I am able to deal with everything that happened and I accept everything that happened and I do not blame myself or others(most of the time ) and I am moving forward and making good choices with my life. Thank you, Jesus. Thank you, friends. Thank you, strangers that cared for me.

 

[stjohn1633]

Today, my little 2 1/5 year old miracle said a 5 word sentence! She said, "I lay down dis side". She wanted to lay between me and her daddy :) Wow! How far she has come! Amazing and wonderful <3

She still has physical and occupational therapy 3 days a week. She has several surgeries coming up in the next 2 months. She will have a heel cord lengthening surgery and a surgery to fix her hernia on her belly.

When Rose was in ICU, she swelled up so much, she gained 100% of her body weight in fluids. She was so swollen, it was cutting off her circulation. To fix the problem, they had to cut her open, right down the center of her belly, and also down both sides of both of her calves. They had her insides out... just lying on top of her, under a plastic bag. I am amazed at her recovery. I am amazed at her resilience.

I love Katy Perry's new song. I heard it today and the words just hit me... like they were written just for my daughter, my little burn survivor.

"Rise"

I won't just survive
Oh, you will see me thrive
Can't write my story
I'm beyond the archetype

I won't just conform
No matter how you shake my core
'Cause my roots they run deep, oh

Oh, ye of so little faith
Don't doubt it, don't doubt it
Victory is in my veins
I know it, I know it
And I will not negotiate
I'll fight it, I'll fight it
I will transform

When, when the fire's at my feet again
And the vultures all start circling
They're whispering, "You're out of time”
But still I rise

This is no mistake, no accident
When you think the final nail is in
Think again
Don't be surprised
I will still rise

I must stay conscious
Through the madness and chaos
So I call on my angels
They say

Oh, ye of so little faith
Don't doubt it, don't doubt it
Victory is in your veins
You know it, you know it
And you will not negotiate
Just fight it, just fight it
And be transformed

'Cause when, when the fire's at my feet again
And the vultures all start circling
They're whispering, "You're out of time”
But still I rise

This is no mistake, no accident
When you think the final nail is in
Think again
Don't be surprised
I will still rise

Don't doubt it, don't doubt it
Oh, oh, oh, oh
You know it, you know it
Still rise
Just fight it, just fight it
Don't be surprised
I will still rise

 

[stjohn1633]

I want to forget last year. I want to forget the fire. I want to forget the fear. I want to forget my baby being burned, her being in the hospital for 5 months. I want to forget the ventilator, the feeding tube, the trach, the bandages... But this has taken over our lives. Where we live, where we work, what we do, what we think about. She has permanent scars. A lifelong injury. A lifelong disability. Changed forever from how she would have looked. How do we overcome this?

 

[Tinyflame]

One small step at a time?

:hug:

 

[stjohn1633]

Still fighting... fighting anxiety... panic attacks... negative thoughts... depression...

Tonight is hard. My older daughter is in the ER with my husband getting a broken arm looked at. She caught herself wrong on the trampoline. He's been gone over 5 hours. His phone is dead. Already had a long cry today because my husband and I had an argument before he left. He broke one of my CDs with our favorite song on it. He said he would bring our daughter back but maybe not himself. He was angry because he says he does everything around here. I don't do anything. He wanted me to take daughter to the ER, but he could tell I was overwhelmed by it. I've been having panic attacks several nights a week. I'm 31 weeks pregnant... high risk pregnancy.. I'll be induced at 37 weeks.. same week nursing school will start back for my final semester. I've been having finals in nursing school for the past 2 weeks.. I had a test yesterday, a test today and I have a test tomorrow. I have 3 tests next week. My husband is disabled. Lives in constant pain from a car accident. I'm just trying to... i don't know... do the best I can. Sister come over and says I shouldn't be having to work... men are supposed to work to support their families. Whatever. I live with someone who is in constant pain and disability. I live with someone who... i don' know.. I think he is so bitter in his heart. He is a good man though. Why so much pain? Nothing makes sense to me right now.

 

[stjohn1633]

I like to come here and read from my past self. When I'm feeling low, it reminds me of how far I've come. It reminds me of how much better I have it today. How wonderful my life is today. Yes, depression creeps in. It tries to tell me that I have no reason to be happy. It tries to tell me that I should feel lonely and I should feel down. But I have so much to be thankful for. I have a house now fully paid for. I have a job making 4x what I used to make working half as much as I used to work. My husband found a medical device that has reduced his pain and given him the ability to work again. I have 4 beautiful, loving children. They are the light of my life. I don't know why I get down. I don't know why I let a stranger's words cut to my soul. I don't know why I feel so inadequate and like a failure. Help me God to not give in to the lies.