Charging Bull

I've been waiting to blog until my fibromyalgia flare up ended. I thought it's be gone a long time a go but instead this time it's stuck around for a month, with no signs on letting up. Instead I'm get worse with every passing day. 

I'm in so much pain that I can't eat. I just vomit it back up. Liquids seem to be fine though so I've been sticking to dark sodas since they stay down better than clear fluids. I'm not even sure how to describe this other than if anyone knew exactly how I was feeling, then they'd probably have me admitted into the hospital. It's been a while since I've felt this truely bad and to be honest, this episode could very well be the worst I've had. 

But still I hold faith. I'm positive the pain will end (or at the least get better). I believe Gods word that after every storm there will be a rainbow. I'm just waiting for that rainbow to appear. Every morning I wake up and every night I go to bed I hold out hope that tomorrow will be that day. 

I look myself in the mirror and sternly tell myself that today isn't the day we wallow in self pitty but the day put on our brave face and push as hard as we can to make it through the day. Even if that means several naps and pjs. 

I refuse to give up. I refuse to let my heart give up. It's been fluttering more with the increase in pain. I close my eyes, take a few deep breathes and calm myself down. My body is tired after years of stress. I see that now but that doesn't mean I wave the white flag. No.  I keep fighting because that's all I know. I charge forward like a stubborn bull. 

I just pray tomorrow will be better. 

Glow Worm

We got a surprise! So today I got a call from hubby saying to get home because the dog ate Liam's gtube button. Yes folks you read that right. The dog...ate...Liam's gtube. He just decided it was a toy and pulled it out and ended up eating it. Justin said he heard Liam yelling at the dog "no dog no! Bad dog!" So he turned around and saw what happened. Liam didn't cry, he just scolded the dogs. That's a new one for us and now we know that Liam isn't allowed outside with them unless he has on clothes. Apparently the dog really like the smell and taste of the stomach leaking. Smh. Anyway. I came home and cleaned him up and put in a new button. I got to looking at it and that's when I realized it was a glow in the dark button!! We've had a blast with this tonight. We called him a ghost, ET and taught him to say "et phone home" then called him a glow worm. Liam thought it was the coolest thing ever to have his gtube glow. #etphonehome #glowworm #nightlight #glowsinthedark #gtube #amtminione #nonballoon #feedingtubeawareness #cdhawareness

Unanswered Prayers

          I recently sat down and talked with a good friend. I had something I needed to get off my chest but felt I couldn't tell someone. This was something that had been weighing on me for a little over a year and it seemed that for several days God kept reminding me. I didn't set out to tell her (my friend) but as we sat there talking my heart became heavy, my lungs didn't want to function and my brain screamed "let it out". So I did...

"I spent years bargaining with God over Liam.

First it was 'God don't let him die, take me instead'.

Later after he survived NICU and started having all his hospital stays and constant barage of problems the bargain became...

'Please God take away his pain. It's not fair that an innocent baby should suffer. Please take away his pain ad sickness and give it to me instead, anything to make my baby healthy and happy'

 I feel that after years of begging and trying to bargain for Liam to be healthy that God decided to answer my prayers.

Liam started getting healthier.

And I sicker. I feel that I can't ask God to take away my pain and suffering because I told him I would take Liam's place.

I felt this was my pennance and I would bear it and only ask for strength to endure this."

          I had never told anyone this because I felt I couldn't. I just couldnt say it out loud to anyone but myself. I didnt feel that anyone would take me seriously, not even my husband so I kept this secret of mine bottled up. Until it burst free from it's prison. My friend, whom is an answered prayer herself, didn't get frustrated with me as I rambled on almost senselessly. She didnt laugh or think I was crazy. What she did and said to me whas exactly what I needed.

          This friend is a woman of faith. We happen to attend the same church and share the same beliefs. She's not one to sugar coat things and put a fake smile on her face. When it comes to the important stuff, she's real. She's straight forward and isn't going to play games with you because in her words 'ain't nobody got time for that shit!'. I admire this highly about her. This is why talking to her is so easy. 

          After my ramble, she laid it all out on the table. She basically asked me if I knew how crazy I sounded. It wasn't asked in that  mean way some do, but she honestly needed me to hear how I sounded. She went as far as repeating what I had told her in a broken down form.  (The following is not word for word but the just of it)

You asked God to make Liam well and make you sick.

You asked God to make you sick and you think he did?

God doesn't do that.

          I then explained that I even though I realize, rationaly, God wouldn't bargain. He wouldn't trade one for another. He would make Liam better but forgo making me sick in return. But my brain wouldn't listen to that argument. I still felt that this was a penance that I couldn't ask to be taken away even if it was the devil seeing an opportunity to strike and doing so.

          Again she was so patient with me, my friend. She told me that she felt that after years and years of stress with Liam's health that my body just couldn't take it anymore. That it's tired and needs a rest and choose this time, when Liam is getting healthier to do so. Basically to thank God that my body didn't break sooner when Liam was really sick. Again this isn't word for word, just the just of the conversation.

          After she said this, it made complete sense. I just hadn't realized before that this was even an option. I hadn't realized just how tired by body and soul were from our CDH journey with Liam. She made me realize that yea, I can still tough it out and try to do more than my body wants to do right now and pay for it, but I should let it rest. Let my body and soul heal so that I can be me again. 

          I still have yet to ask and beg God to take this pain and fatigue and headached away. I have asked for strength more often and am trying to hadle this with grace and honestly. Explaining to my kids that I'm sick and that some days are better than others hasn't been easy but I'm being truthful with them. They need to know. As each day comes and on days I'm down, I explain what's happening. My daughter, who has the biggest heart ever and is gettin an award this Friday at school for her kindess and caring and helping of others (whoot whoot) tries to help me out. 

          She knows that it's very lonely and upsetting for me on days I'm in loads of pain so she always suggests things we can do together while I'm either stuck in bed or on the couch. We've played games, read books, colored, watched movies. She has a lap desk so when need be, she can get help on her homework without me having to get up and move too much. She is always asking me if I need a snack or something to drink. I hear 'it's ok momma, I can get that' and 'let me help you with that momma' from her more than I've ever heard any other kid say. 

          I remember a conversation I had with my good friend where I explained to her all that Lanie has had to go through with her brother being born with CDH. How she had her mommy ripped from her for almost a month, had to sit quietly in NICU every day all day and see her brother hooked to all kinds of tubes at 3 1/2 years old, how I spent 90% of the following 2 years away from her because of all Liam's hospita stays. I had voiced my concern about how I was afraid that this would scar her for life and that maybe I could have done things differently. But the truth was nothing could have changed. I was needed at Liam's side and hubby with Lanie at home tryng to give her the closest we could to a normal childhood. My friend had explained that this was teaching Lanie to be nuturing and careing and giving and that she could see this in her. She said that I could be very well shaping her future to be a nurse or a doctor and the same for Liam. 

          She reminded me that good always comes from bad. That I believe. So as the Garth Brooks song goes...

One of God'd greatest gifts is unanswered prayers

          All those years of praying to take Liam's place, God choose not to answer. He would indeed make Liam healthy, but he wouldn't make me sick. He knew I had another battle to forge and ensured that I had the strength to fight it and a good friend by my side to help me keep my faith.