Behind The Scenes

Truth be told there are a lot of things leading to this post. On the Bobby Bones show this morning they were talking about how no one posts the gory details or the truth on social media. Everything is sugar coated. When you ask someone how they're doing the automatic response is "great thanks for asking" not "well shitty actually". I've tried to keep things real here and not sugar coat it, but I think I failed. 

I'm always trying to stay positive even when I don't feel positive. That's just how I am, who I am. So let's do some behind the scenes recon here and be real. 

"How are you doing?" Well pretty shitty actually. I'm super stressed. Liam's sick AGAIN. He was just sick last month. We narrowly avoided a hospital stay. It was pretty scary to watch him have problems breathing. Truthfully it brings back memories from the first time I held him and he turned blue on me. They had to call a code blue. I guess before then I never thought about why they call it a code blue and it pretty much freaked me out. I was scared to hold him for a long time and had so much anxiety over it. To say that that experience really messed me up would be to put it lightly. I have a hard time holding other people's babies because of this and when I do get the courage to, it's only for a minute or two before anxiety sets in. 

We're on our last option for home treatment right now. Oral steroids and another antibiotic. He's been on oxygen all week. Today is the first time in 3 days he's gone without it for lasted more than 5 minutes. It's scary. I'm on edge. Our bags are packed and ready to go in case it comes to that. If it wasn't for last nights storm, I would have been driving him to children's hospital. But this morning he's better. This storm has caused us to go without electricity twice in two days for long periods of time. Which is scary when you have a kid on oxygen and the concentrator needs electricity. So not only were we getting sudden pitch black darkness but a loud alarm screaming at us telling us there's no electricity going to his oxygen machine. Yea that 3am wake up call about gave us all a heart attack! It's a good thing we have oxygen tanks. 

I'm not a fan of repetitiveness or alarms to say the least. They raise my anxiety and caused flashbacks so I'm always jumping up the minute they go off to shut them off. I just can't deal with it. My morning wake up alarm is a song on my phone because I can't take alarms. I have freaked out and screamed at both his feeding pump and pulse ox. I've broken down crying in frustration and anger because no matter what I did he alarm would go off. 

On top of it all is Liam's fits today. Crying over everything. Crying for no apparent reason. Crying because he was told no. Crying because he wants the cartoons changed every 2 minutes. Crying because he wants me to make him a specific food then crying when I do because he no longer wants it. Crying because the kitten looked at him wrong. He wanted me to hold him then would use his elbows into my stomach (pretty sure accidentally). Then he'd try to put his fingers in my mouth (not accidentally). 

I would pull my hair out if stress wasn't already helping with that. I'm exhausted. Haven't slept more than 2 broken hours per night in the last week. The circles under my eyes tell the whole sordid "secret". Hiding them is no longer an option, nor do I have the energy to try. I'm drinking a pot of coffee every morning for the last two mornings then another mid day. My bones ache from the electrical storm we had. And my body is in a ton of pain. I haven't brushed my hair today. I barely brushed my teeth. I haven't eaten anything but Gordettos and fruit roll ups today. I'm in need of a shower. I might as well throw my makeup in the trash. And while I'm at it throw away any jeans or tight clothes. 

I feel worse than I look and I look pretty horrible lol. 

I'm wearing leggings and a tank top. Liam's chewing on everything that isn't nailed down... Oh wait scratch that. He's chewing on everything. 

And I wore these "sexy" spider Webb leggings to the bank (drive through) and dollar store this morning after dropping my daughter off at school. At least I was looking for Halloween decorations in my Halloween leggings. Well actually I was looking for colored pencils and got sucked into the Halloween section vortex and couldn't get out. The holiday sections in stores always suck me in. 

And do I care that I left my house looking like that? Not today. I do t care that I went out in those leggings and threw on a sweater or had messy hair and no make up. Why? I'm done caring what others think and could care less about pleasing anyone anymore. I too far gone now that I am unable to hide this walking yard sale any longer. 

I have two priorities:

My children's health

My children's happiness. 

Living with a chronic illness and having a child with a chronic illness goes beyond words. It's hard enough to take care of a child whose always sick. It's takes a lot of energy and patience. It trying to take care of a child with a chronic illness while living with one yourself is a whole new world. I have to fight harder to do what needs to be done. At the end of the day I'm too exhausted to eat  do anything but fall into bed once the kids are in bed. 

And I'm going to admit it, my house isn't spotless. One when you have two young kids running around making 2 messes for every 1 you cleaning seems nothing gets done. I have chronic fatigue as well as fibromyalgia so getting out of bed is difficult for me. Laundry gets back upset times thanks to a dryer that doesn't dry the first round. There's usually always some dishes in the sink. Toys cover the floor I every room because my 4 year olds mentality is that there HAS to be toys everywhere and he's playing with ALL of them, in every room, at the same time. SMH. 

There may be loads of laundry but there's loads of love in this home. We work together. We clean every day even though it looks messy again 10 minutes later. The kids may fight and torment each other but they love each other. I may want to run away from all the chaos and noise sometimes but I wouldn't trade this for anything. 

I knew being a mom and raising kids would be tough. I knew being a mom wasn't for everyone, after all look at my own mother. She didn't raise any of her 3 kids. He couldn't even handle being in her kids lives after they became adults. I knew that once I had kids I was in it for the long haul and I promised I'd never give up, or walk away. I expected sleepless nights, being thrown up on and pooped on. What I didn't expect was this life. I didn't know it could ever get this rough. I didn't know my baby could ever be sick I was expecting healthy happy children. Not one who had to fight for his life from the Minute he was born. 

I didn't expect CDH, chronic lung disease, feeding tubes of any of that her stuff I didn't expect to be exhausted and stressed all the time. I never expected I'd ever have my heart and soul shattered the way it did when Liam was born with CDH. But those were the cards God dealt me and I learned to adapt to the situation.  I learned to embrace it. Because if I hadn't I wouldn't have my little lamb. 

This is my life now. It's far from pretty and perfect. Things don't come wrapped in a bow. It can be gory and ugly at times. But this is my life and I'll defend it until the end. I was shattered but slowly am putting myself back together. It's not instant.  I can't just pop it in the microwave and it be done. Super glue won't hold. It's going to take slow steady careful stitches.

But this is my life and I love my kids for who they are not what I wish they were. 

Not Helpless

A parent should never feel helpless when it comes to taking care of their child. But as I sit here at 2:30 am after another one of Liam's coughing fits, that is exactly how I feel. And I'm reminded of all the other times when I could not help him but only sit at his side. 

That's when I remember what the nurses in NICU always told me:

 You are never helpless. Your doing exactly what your baby needs you to do by just being here, sitting by their side and holding their hand. That's not nothing. That's huge. Giving them comfort and love while they fight makes a difference in how they fight. Your doing the right thing. 

Thank you to all those nurses at UCSFs NICU who drilled this into my head because years down the road when I most needed it, there it was to comfort me. 

I will always say that this journey is never easy. It's road it full of potholes and detours. Some days you'll feel like there's nothing you can do but remember that just by being there, you're helping. No one can comfort your babies like you do. 

Us moms are always the hardest on ourselves. We feel like we have to carry the weight of the world on our shoulders and never ask for help. But one day that weight will crush you so find that one person you can be real with. That one person that will let you vent and will straight up tell you what they think or feel without any sugar coating. We need that. It makes the journey much harder without someone by your side. 

I've felt alone in this for all too long. I still do. But truth is I was too afraid to ask for help from those around me because I thought everyone around me expected me to handle it on my own. Truth was they just didn't know what I needed from them so they did nothing. Because of this I hold an unwarranted grudge against many including my husband and I'm having a hard time letting go of that anger. 

As I sit here and listen to my little lamb cough in his sleep, I thank God that we are home. And I thank God for reminding me that I'm not helpless and that I'm ding exactly what Liam needs me to do. Just be here.

X-rays and O2

Today we continued to fight this battle. Liam is steadily getting worse. I sent videos to our pediatrician of Liam breathing and he ordered X-rays. We we're worried he might have pneumonia based on the heavy labored breathing and the cough. 

(Liam waiting for his X-ray today)

X-ray showed no signs of pneumonia. Pedi thought his asthma and reactive airway disease was acting up. By this time Liam was already back on oxygen. He was considering putting Liam on oral steroids again. Depending on how he does tonight and tomorrow morning will determine if he has to take the steroids or not. 

Liam was on 1 litter of oxygen but after going to sleep he needed more support. He was breathing even heavier with his saturation dropping so I increased him to 1 1/2 litters. Liam is currently sleeping comfortably and hopefully will stay that way all night. We're both exhausted. 

Fighting An Uphill Battle

I sit here looking at my son, my little lamb who is fighting another virus and on oxygen and I think "why does it have to be so hard?" 

Today I took Liam and Lanie to urgent care. Lanie had a really bad sore throat and I needed to make sure she didn't have strep. I have Liam and I checked as well. We were all negative. They said it's probably he virus that's going around right now. 

When I hear someone say "oh it's just a cold" or "its no big deal just a small virus", I want to smack them upside the head on hopes to juggle the smarts loose and override the stupid. 

With a CDHer it's never "just a virus", "just a cold". 

It's "I'm struggling to breathe and can't keep feeds down and am rapidly loosing weight" thing. 

Today at urgent care I was scared to look at the scale. I didn't want the disappointment of seeing that he'd lost more weight. I am already seeing him all skin and bones. After seeing it in KG, I was too scared to ask the nurse to convert it to pounds for me. But I decided just now to do it. 

24 pounds and 4 ounces. My 4 year old son should be way bigger. He should weigh around 40 pounds. And his BMI should be 14-18% not 0%. 

It's been such a struggle. Every time we get somewhere with weight gain, he gets sick or stops tolerating feeds and looses it all. We have no room to budge or fudge or loose here. 

I'm not asking for things to be different. I'm praying for the strength and knowledge to help my son through this. I have to keep faith that we will get there. 

I've been so disappointed for so long that I work so hard and basically kill myself to hell Liam gain and it always falls flat. But I look at him and he will just smile at me with that million watt smile that melts your heart and I know that's his and Gods way of saying it'll work out. 

For now we just need prayers. Prayers that he gets over this soon. And throw in prayers for the many many CDH kids and babies fighting harder battles right now. Baby Emily who isn't looking too good. Jaime who is in the hospital because he has a bowel obstruction. And so many many more. 

How Fibro Changed Me

As I'm sitting here having a bad pain day and therefor a bad emotional day, I'm thinking about all the ways fibromyalgia has changed me. 

-I've lightened my load in my purse. I've even put away my favorite purse and use a much smaller one that barely fits my wallet, keys and phone. I just sang carry anymore than that because it's too painful. 

-I wear my clothes looser. All the clothes I've been buying are way looser. Some 2-3 sizes too big. Tight clothing feels restricting and causes a lot of pain.

-because of the pins and needles feeling and being hypersensitive I wear a lot of long sleeves, even when it's hot outside. 

- being touched causes pain. Even hugging. I still hug and cuddle my kids and push past my limits for them but it causes pain so intense I'm left crying and needing to be left alone. Because of this I hate being touched. I hate handshakes and someone in my personal space. The good thing about having a friend who understands this is that I know it's safe to be around her because she will never try to go in for a hug like some others. And she will never get her feelings hurt by the fact that we just don't hug. 

- my house isn't as clean as it used to be. I just can't keep up. Movement causes pain and pain causes exhaustion. I get very little done before I have to sit down or lay down. It sucks. 

- I have to take naps and frequent breaks to make it through the day. The problem with chronic fatigue is your always exhausted no matter how much you sleep. 

- you know how they have so many cute shoes that you would kill to wear? Heals, boots, name it? Well wearing them kills me. Heals are a huge NO NO! Walking is painful and any shoe that's not a flip flop makes it worse. 99% of the time I'm wearing flip flops. It takes to much energy to bend over and put on shoes that have to be tied or zipped so I wear what I can slip my feet into without having to bend over. Now that cool weather has hit and flip flops aren't feesable I don't have a choice but to wear enclosed shoes. Slip on boots with no laces and minimal effort are what I'm stuck with. On a decent day I may wear something else but chances are slim. 

-I don't have the energy to wear makeup or do my hair. I'm lucky to get into the shower and wash my hair. Makeup free with the sleep deprived bags under my eyes in plain sight and hair down or ponytail. 

- lifting my arms above my shoulders is almost impossible now so anything more Han a quick ponytail is a no no, not gonna happen. This includes reaching for things and lifting. 

-heavy lifting.. Hahaha yea right! I have problems picking up and carrying my 25 lbs son!! He walks and then I put him in a cart when we go somewhere. By the time I pick him up and place him in the cart I'm out of breathe and ready to go home. 

- I try to stay clear of social situations. I just can't function in them. Between the noises and being surrounded by people I just cant hack it. 

- I don't exercise anymore, ever. Unless I want to be stuck in bed for 2 weeks!

- I use to love to read. I read every night before bed. I can't even keep my eyes awake to do so anymore. Reading out loud to my kids is difficult because I have problems with slurring words and it's exhausting. 

- I don't like to talk on the phone or talk period. I'm that quiet person who hides in the corner when I take my kids to birthday parties. I don't talk on the phone a lot and when I do its only for a select few special people like my aunt and grams. 

- by the time I'm done cooking meals I don't have the energy to eat them. I have to rest before I can eat. This is most dinners. Other meals I microwave or skip (for myself anyway). 

- I'm constantly in pain so I'm grumpy most the time. It sucks honestly. 

- hobbies. Well I don't have the energy to do hardly any. Once in a blue moon but it's usually something with my kids.m, like my previous post. It's not fair that they should have to suffer as well. My online store is basically none exsistant because of this. 

- working is impossible. I can't stand for long periods of time. I can't be surrounded by all those people and I can't think because I'm always sleep deprived. 

These are only a few ways my life has changed these last few years. People tend to not understand when you tell them you have fibromyalgia. They just don't understand how it really changes you. I'll never be the same person I was before. 

Ten Flying Brooms Craft

Since it is rainy outside today I pulled out a Halloween craft idea I'd been planning to do with the kids. I found this book called "ten flying brooms" then while on Pinterest saw an awesome craft to go with it. 

So I dug out some Popsicle sticks, felt, and the hot glue gun. I drew out the pattern and the kids cut them out. We had a blast. After making these, I brought out the book. The kids were excited and loved it. 

Here's how we made our broomsticks. 

1) cut out 10 prices of felt that are similar to a square but flaired out at one end. 

 cut slits on the large end to make fridge. 

2) put some glue on the end of a Popsicle stick. I glued about 1/4 of the way up or less. Place the stick, glue down on the felt. Make sure glue is covered by felt. 

3) put more glue on the backside of the Popsicle stick then fold over one side of the felt. Hold until cooled. 

4) repeat step 3. And that it!

We numbered our sticks so Liam has to look for said number in the book. This helps him recognize his numbers. We're also thinking about making little witches so as we read along with the story we can have the broom find its witch just like the book. 

The kids sat there and continued to play and read after we read it the first time. This is such a fun activity. 

Stomping Puddles

We got a nice surprise today and woke up to rain. It sprinkled lightly then turned into a steady steam for a few hours. Living in California we don't see much rain and we know how precious every drop is. 

We could let the "storm" pass us by without putting on the brand new rain boots we just bought (since we keep hearing El Niño is on its way and bringing loads of rain). 

The kids were in awe of the wet stuff falling from the sky. 

And then it was time to jump in whatever puddle they could find, big or small. 

Poor Liam had trouble walking in his rain boots since they're heavier than his normal shoes and a bit bigger. But that didn't stop him. 

The kids, being California born and raised and never even seen snow, decided it was too cold and that they needed jackets. 

And an umbrella. 

Poor kiddos would freeze in the snow!! Lol. 

We had a blast playing in the rain. 

Picture Day and more

Friday was picture day at school. Or as my kids chanted excitedly "picture day picture day it's picture day yay" until I thought my ears would bleed or my head expload lol. They were so excited and it made for a fun morning dressing up, doing their hair and pretending to be a wild thing.

Yes pretending to be a wild thing because where would we be if Liam didn't sport his wild thing sweatshirt with hood up and walk around the house roaring at everyone. 

What a fun sweatshirt!!

Liam had so much fun that he refused to let me take the hood off so that I could do his hair. I had to take a brush to his school with me and fix his hair as they lined up to take pictures. 

He wouldn't even take it off to take a picture with sister. Neither seemed to mind since we're all used to the antics around here. Lanie wore a new outfit picked out just for pictures. She proudly sported her healed boots that I never let her wear. (See how she's trying to make it known in the picture lol)

The snags didn't end there though! I had forgotten to go by the bank to pull money out to pay for pictures so we had to leave early to do so. After getting to school I discovered that the picture envelopes were left at home and had to hunt down two more! Thankfully Mrs B, Lanie's teacher had extra!

Once the envelopes were filled out and stuffed with money, I sent Lanie off to class and returned to Liams since it was my scheduled volunteer day. It didn't take long before his classes lined up and left to take their pictures. 

After picture time the teachers lined them up on the tables on front of the class to take a big group picture. I was able to snap a few but can't post them due to safety reasons. 

I did snap this cute picture of Liam on the bench however. I really hope he smiled just like that for his picture because it's adorable!!

The class mascot was included in their group picture so of course we had to take a selfie with her. Her name is Franny and every morning she sings songs with the kids and they tell her good morning. Liam thought it was hilarious to cover my mouth up. 

Later Friday night I took the kids out to Bella's school carnival where they had a blast playing games. 

Lanie has a pretty good arm on her. She tried out the pitching booth and did great. 

We couldn't leave without a picture at the photo booth. 

We stopped off at the 4H booth to pet the bunnies. Liam kept telling us how soft the sweet bunny was. He had no interest in the baby goat though lol. Guess he had enough of goats at the fair!

We played King Kong ping pong many many.....MANY times. Liam loved watching the ball make its way down the board. 

Liam wouldn't let us leave without trying the water gun race game... Twice. He won the second time around. By this time Liam was true my exhausted but we still had tickets to use up. 

So we went back to he photo booth and took a picture with their cousin Steven. 

And this next will have you doing a double take if you know our little lamb. 

We had to at least try the cotton candy. Well truthfully I bought some cotton candy for myself and we sat on the grass to relax. Liam took one small taste then stole the whole thing from me!! He ate it!! And he loved it!!! We ended up going through 4 cotton candys throughout the night between the three of us. Liam ate at least 1 1/2 himself. 

This is HUGE!!! Finally little lamb is fighting through his oral aversion and trying new things and loving them!! 

Friday was exhausting. We didn't get home till almost 9pm. We didn't have much recouperating time before one of our favorite littles 7th birthday party. Little Jada (whom I like to call a sour patch kid) celebrated her birthday in style today with a frozen themed party that rocked it!! 

Her mom worked so hard to make it special and it was perfect. I am lucky I got to help a little with decorations and making frozen themed candy for the kids. 

I found the Wilton mold at Michaels and used the 40% off coupon then bought winco's melts. I went to a local cake shop for edible glue glitter dust for that extra wow factor. Pictured is the first batch which turned out with too much in some spots. The kids loved them though. 

Liam and Lanie enjoyed playing with their friends and seeing some they haven't in awhile. Liam are pretzels, chips, cake and had a blast hitting the piñata. 

After a long two days id say we could use some R&R. In all honestly it's been a long two weeks for me and I desperately need some R&R but it doesn't look like I'll get any anytime soon. 

I tend to end many of my post in a similar fashion but here it is...

This is what life is all about. Enjoying every moment and making it happy and fun. Not hospitals and pain and sickness. Thank you God for another great day with my babies. 

<3 <3 <3