Tuesday, April 28, 2015

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.  

Monday, April 27, 2015

Try and You Won't Fail

My inner child wants to stop her foot and scream like a little girl in a tantrom. As good as that would feel, I have to be a grow up and well act grown up. All mom's go through this every now and then right? 

Last week I was busy helping a friend pack and move. It was a big, momentous occasion for her and I was more than happy to help her move go as smoothly as possible. Sadly we did have one hang up or glitch. The extremely complication, expesive remote is missing for her super complicated, too smart for it's own good tv. This means she can't use her tv at all. OOPS! It went missing thursday and is still missing. Hopefully she will find it.

Sadly this sent me into a fibro flare. With so much going on I couldn't let the flare keep me down. I still had a house to catch up on cleaning and a family to care for. And since taking Liam out of preschool, it was up to be to work with him daily. So I pulled up my big girl pants and powered through it. Something I really didn't want to do.

By the time Friday arrived, I was done. I had been fighting off alergies all week as well as pain and headaches. My energy was drained, yet I woke up each day trying to take on more than my body could handle. Friday night appeared and I was worthless. I had a mountain of laundry to fold and no energy to do so. I couldn't control my body temp, something that wasn't abnormal for me, so I sat around cuddled in a sweater. Lanie ended up going to a ball game with some friends so it was just hubby, Liam and I hanging out on the front pourch. I stayed up way later than I should have, waiting for Lanie to get home, but she was super excited to tell us all about her night.

Saturday I was in such bad shape that even though I got up at 7am and made breakfast for the fam, I had to go back to bed and rest after. I ended up passing out and not waking back up until a little after 1pm. I still woke up feeling crappy but there was much to be done. I got dressed, something that took all my energy to do. After I had to sit down and rest. I went to drink a soda when my hands decided with the can halfway to my mouth that it no longer wanted to work. All the mucsles in my hand and arm went slack, resulting in my arm falling to my lap, as well as the can of soda. I looked like I had peed my pants. 

What happened next was more embarrassing. In a moment of pure weakness, I broke down crying. It took few minutes to compose myself. I was shocked by the outburst of tears. This was how I knew I was in bad shape. I should have just gone to bed and called it quits but I couldn't. Instead Liam and I went to Target in a failed attempt to find a birthday gift for my nephew. What do you get an 18 year old boy???

I was able to get a few things we needed before heading out and going to little ceasars for pizza. Of course they were out of cheese pizza for me so I got the fam peperoni and headed to the grocery store for my dinner. Because why would anything work my way? By the time I got back home, I was too exhausted to eat, so plopped on the couch and fell asleep for an hour instead.

After waking up, I microwaved myself a frozen cheese pizza, because I was dead et on cheese pizza, and the kids and I got comfy in my bed and watched the Box Trolls. Such a cute movie! I needed the time to slowly eat and rest more. After the movie I decied to tackle cleaning the bedroom and folding the laundry. Thankfully I got through it. 

My nephew ended up comming over and speding the night so he and my hubby could take off and go golfing Sunday morning. This turned out to be good because hubby paid for his golf balls and gave him cash for his birthday. They had fun. I made the kids breakfast and around 11am got enough energy to clean up the kitchen. I forced myself anyway. I used all I had to lug the trash can out side and dump the trah bag in the big trash can. Come to find out, we were out of trash bags so I had wased by enery for nothing and this made me so mad. 

We had to make another trip to Target for trash bags and more after hubby got home. Thankfully he had come with me because I was infuriated at everything. I couldn't find anything I needed and everything was making me mad. Luckily he found what we needed and we got out of there. Hubby did learn that this is the best time to take me because I don't have the energy to look around and I don't end up making senseless purchases. Like a new book (to me that's not a senseless purchase but because I have many that I need to read he prefers I wait to buy more). 

Next stop was my brother in laws to celebrate my nephew and father in laws birthdays. Seriously by this time I was done and exhausted and Im not sure how I made it through the night without passing out on everyone. 

Each day that passed my allergies just kept getting worse and worse. For the pat 4 nights I have been awake for at least 2-3 hours in the middle of the night. Funny how when your super exhausted and in pain that you just can't sleep well. 

I would say good news it's monday but, it's monday! With monday has ome a whole new barage of problems. 
Possible sinus infection
Family member passing away
Terrible migraine
NO energy
PTA problems that I'm ot even daring to discuss because I don't have te energy.

So how do you deal with things when it seems like way to much?

I tell myself that this is life. Things aren't perfect and life is designed to test us as far as our limits will allow. So if things just keep getting worse than it must mean that my limit is very high. No I won't win an award or be precognized for simply living the best way I know how, but I wouldn't want that. As much as I wish life would get better, I expect it'll only get worse, so I better make the best of it and go down smiling knowing I did all I could. As long as you try, you never fail.

Tuesday, April 14, 2015

Mommy Medical Update

I've been procrastinating on updating because to update on my medical well being, I have to think about my medical well being. That's something I don't want to do. But here it is...

April 2nd was my last appointment with the neurologist. 
-my bloodwork came back clean. I didn't have heavy metal poisoning. 
-the MRI of my brain showed I had a healthy "beautiful" brain. 
-He did an EMG to test my nerves and it showed that my nerves were fine. Whatever's causing the numbness and tingling has nothing to do with my nerves. 

Basically he found nothing neurologically wrong with me and is unable to treat me or continue to see me. How can my nervous system be effected yet not be effected. It's very frustrating. 



Today I went to the cardiologist and have a ECO done of my heart. All EKGs I've had in the past showed nothing wrong but because this problem continued everyone felt I needed an ECO. I didn't get the results of the ECO. I didn't even see the doctor today. A nurse hooked me into a heart monitor that I am wearing until tomorrow. Then I'll go and have it taken off. Again I don't think I'll get any results. 

I doubt they'll find anything wrong because that's the story of my life, or my "illness". They never figure out what's wrong with me. There's no reason why I should be in constant pain or have constant headaches or fatigue, but I do. 

And it sucks!

I've been suffering from dizzy spells and vertigo lately. Today there's been a lot of dizziness. I can't seem to shake it. I jus want it all to go away. 

On the plus side, Liam went to my appointment with me and he behaved. He was quiet in the waiting room (which by the way was akward because I was the youngest patient there and everyone kept giving my weird looks. I had to just avoid looking at anyone because they wouldn't stop staring). 

I was also able to spread CDH awareness to several of the staff members. The ECO tech was curios why Liam was so curios about the machine and why he climbed up on the table, rubbed my belly and kept saying "it ok mommy. Your ok" over and over. I explained his medical history and how he was just so used to all the procedures. I almost started crying because my baby boy was making sure I knew he was there for me just like I had done a million times over for him. That's was a sign I was doing things right. 

The nurse who put the monitor on me fell in love with Liam. She asked him for a hug and then picked him up in a hug. All of a sudden a weird look crossed her face and she asked how old he was. Hearing that he was almost 4 years old she commented on how light weight he was. That opened the window to explain why. After hearing he was failure to thrive and had a feeding tube she asked if he could have some candy. I laughed and explained he could eat whatever he wanted so she loaded him up with a sucker, Reece's fast break and a lindor truffle. Liam thought he hit the jackpot and laid on the puppy dog dreamy eyes and a huge smile on her. It was adorable. 

But the best moment of the whole day was Liam telling me "it ok mommy. Your ok". ❤️❤️❤️

Tuesday, April 7, 2015

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Monday, April 6, 2015

Time To Go

That moment when you're reminded that your home, but your not home.

This town, this state has been my home for forever now but I no longer feel like I belong here. I may be physically here, but my heart is somewhere else. For many reasons.

Yes my dad's side of the family lives there (my grams, an unce, aunt and some cousins where I want to move). It's a chance to get closer to them and develop the relationship we all lost out on. I understand that my hubby doesn't understand this. I don't expect anyone whose never been through this to understand. I miss them terribly and everyday the hole in my heart gets bigger.

When I went back to visit them last August, I noticed a HUGE difference on my physical health. After all this time trying to figure out why, I found that its because the pressure is less where they live. The elevation is higher and the higher you get the less pressure. Same thing happens with weather. The colder it is, the lower the pressure. Why wouldn't I want to leave a place where I'm in constant physical pain, where I spend much of my time bedridden, and move to a place where I am able to climb mountains?

Lately the reminders have been coming daily. Telling me I need to move. Things aren't that simple thought. I can't just pack up and high tail it out of town. I have others to worry about. Kids and a husband to uproot. Family and friends to say goodbye too. Medical and insurance arrangements to be made for my son. 

And once we leave, there will be no moving back. Visiting yes, but not moving back. 

There's jobs galore there. None here. I can't even work here because of my pain. There I could most likely go back to work since I'll be in less pain. With both of us working we could do really well for our little family. 

Justin and I watched Wild today. He seemed to be reading my mind because he randomly stated that I should probably not be watching it since I already have 
Moving in my sights. It's not just in my sights. Getting another kitten is in my sights. This is in my heart. Ingrained from the moment I stepped off that plane in Denver. The moment I saw my grams hop out of her car, grab me in a quick hug and tossed my suitcase in the trunk. 

That was the moment I realized what home really felt like. When I realized what I was missing. 

I had found that in my husband. Then in my kids. The feeling never was lost. This new feeling was different. It almost completed the missing gaping hole where my Dad should have been. I say almost because I'll never stop missing him. I'll never stop dreaming of how life would have been if he had ended up with me. If he had raised me. If he hadn't died that terrible night by the knife of some jack ass. 

Trying to get my hubby to understand these emotions has been hard. Yes he wants to move. Is seriously considering moving but thanks to his anxiety he just can't seem to take the plunge.   

I wish we were those people who could just pick up and go. But we aren't. It takes more preperation and time. Meanwhile I keep praying. 

**edited