Day 1 of Thankfulness

Often times in the midst of every day life, we forget to be thankful for the little things, or even the big things. I am guilty of this as are million of other people out there. 

With thanksgiving coming up this month, it's the perfect time to think about what your thankful for. Sit down and pick one thing each day. Today was a bit hard to narrow it down to just one thing, so I started going through my pictures and it hit me.

Today, I am thankful for my daughter Lanie. 

With everything going on with Liam over the years, Lanie doesn't get recognized as much as she deserves. She is my first born child (second pregnancy) and the daughter I always wanted. She's funny, smart, caring, loyal, creative and so much more. 

Last month she won student of the month in her class. All her teachers and the staff who work with her often tell me how kind and smart she is and how they enjoy having her in their class. She even has two teachers who wanted her for second grade and now one is bummed she didn't get Lanie lol. 

Lanie works hard in school, comes home and does her homework, chores and then computer homework since she goes to another class during computer time. She doesn't complain that she doesn't get to play a whole lot during the week. In fact she doesn't complain hardly at all. 

When Liam was in NICU after birth, Lanie keep up going. Kept us strong. She made us laugh when we needed it and hugged us when we needed it without us ever saying a word. She's always been very intuitive. 

She helps teach her brother Liam and care for him. She understand he needs more attention because of his medical needs and doesn't complain. Lanie is a trooper. She's stronger than any other little girl I have ever met and mature beyond her years. 

Lanies favorite color is purple. She loves Shopkins, Ever After High, Monster High and Barbie. She loves to read, ride her scooter and is a happy kid. I am so blessed to be her mom. 

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

Perfectly Imperfect

So this...

This is life. 

This is what I breathe in every day and night. 

This is what I wake to every morning. 

To outsiders it may not seem perfect. 

Truth is it's not. 

But it's my life. 

My heart. 

My soul. 

My perfectly imperfect world. 

Perfectly Imperfect Thanksgiving

I've learnt through-out my life that nothing is what it seems to be.

That perfect isn't always perfect.

Today we had a perfectly imperfect Thanksgiving.

And I'm thankful for that.

The turkey was perfectly cooked.

The ham was amazing.

All the food was great.

I was exhausted and kept forgetting what I was going.

I never changed out of my PJ's.

I never did my hair.

I forgot to take pictures.

Liam was scared of the Thanksgiving parade on TV.

He refused to eat anything today.

He fell asleep on me so Liam and I were left at home.

Then he kept waking up with night terrors.

I had a down and out moment.

Thought there wasn't much difference between the two of us being home alone,

and being at the hospital alone.

I got frustrated that Liam refused to eat at all.

That even though we were home,

we were still alone.

And then the moment was gone.

I am thankful we had a great Thanksgiving dinner together.

That we are all together at home.

Both kids seemingly healthy.

We are alive.

I am also thankful that my pain isn't worse than it is.

Instead of being upset that I missed out on a larger family gathering,

I am going to be thankful for this quiet time.

Time I was able to talk to my brother on the phone.

Time I can watch Christmas movies on Hallmark.

Time to wrap some of those Christmas gifts.

I thank God for today.

For every day,

and for our perfectly imperfect holiday.

Surprise Phone Call

          Despite going to bed with a headache last night,

waking up at 11:30p with a horrid migraine that had me in the fetal position in tears,

and waking up still with a headache,

I honestly thought today would be better.

I had gotten both kiddos off to school,

came home and was going to enjoy the peace and quiet.

Justin was at work so I had the house to myself,

and I was going to enjoy every minute of it,

and nurse my aching head.

I couldn't fall asleep so I took ibproffen.

Then I decided to make myself some food.

I ate in quiet and decided to do a bit of blogging.

After all...

I was proud of the post.

It was emotional and true.

Truth is important to me.

How can I give an accurate picture of what CDH does in our daily lives if I'm not truthful?

So again I spewed by guts out.

And for that I was proud.

(You can read the post here)

I decided to work on my book blog and marketing.

Then my phone rang.

(That's when the morning took a turn)

Surprise (yes genuine surprise)

It was Liam's school.

They noticed he was shaky.

His arms shook when they usually didn't.

His legs were shaky as well.

His equilibrium was off causing him to fall.

His face paler than normal and marbled.

And to top that cupcake off...

He was retching.

They knew this wasn't Liam.

He'd never behaved this way.

They called the LVN to the preschool rooms to have a look at him.

They called me right after to inform me.

As soon as she said Liam was acting weird I grabbed my keys.

I was out the door before she could finish telling me everything.

I told her I'd be there in 5 minutes.

When I got there I noticed all these traits as well.

Not just that but when I picked him up,

his entire body was trembling.

'Let the good times roll' I thought to myself.

One symptom on its own would be no biggie.

All these mixed together was another story.

Mix all those with what else he had exhibited at home and I knew something was up.

He had also slept 12-13 hours last night.

Liam never sleep that long.

He had diarrhea for the last 3 days and a killer diaper rash because of it.

This morning he was breathing heavier.

He seemed better after the treatment.

He was a bit quiet this morning,
and there was that whole conversation this morning.

I'm not sure what it all adds up too,

but he sees his pediatrician tomarrow.

Good day for a check up as well.

For now all I can do is comfort him.

He's cranky today and needs his mommy and cartoons.

Daily Struggles

While getting ready for school Liam seemed excited to go. On the way to school I tried to have a conversation with him. I asked if he was excited for school today. He said "no". 

I was confused. He's never said no to school. I asked him why not. He mumbled something that sounded so very close to 'I don't wanna talk about it'. 

I turned the radio off after that so I could hear him better. I asked him again why he wasn't excited for school. He responded "I don't like it". 

Huh?! What?! Since when?! 

I left it alone and finished the drive to school. 

Once at school he was super excited about being there. SMH so confusing. All I can gather is that he just didn't want to talk. He was probably still tired. 

Liam's speech is getting better but I'm unsure if the words he says are what he means. At times it seems there is a wire crossed in my brain. Things come out that just don't make sense. 

Other times Liam's words and the meanings are clear as day. Like when he really wants something and I'm hesitant to give him it he says "pretty pretty please I have ______?" It's pretty clear what he's saying and what he wants. 

Liam is like a puzzle or sometimes a brain teaser (a really hard puzzle meant to exersize your brain). You have to have a decoder ring to understand what he's saying and what he really wants. 

At times it can be very hard. There are days when he talks it's so jumbled and unclear I have no understanding what he wants. It's frustrating what he wants. On those days I get eye level with him and ask him to say it again. Even then, many times that tactic doesn't work. He ends up mad and angry and frustrated. I end up mad, angry and frustrated. We will both be in tears over it. I have to ask him to grab or point at what he wants so I can understand. But there are days that doesn't work. 

Some days it seems that not only is gibberish is all that comes out of him mouth but his brain has issues processing what I'm saying. If it's over something in the kitchen we will end up going through every cabinet, the fridge and snacks just in hopes to find what he's asking for. 

Some days everything is "no". No matter what it's no. He will ask for something (say fruit snacks) and when I had them to him it's "no" he doesn't want them. 

Liam is the hardest puzzle I've ever tried to put together. I know him better than anyone and I still get stumped. Some days he's just so hungry that he can't decide what he wants or he can't think clearly or have the energy to clearly say what he wants. It took me a long time to figure this out. On these days where nothing makes sense, he gets an extra bolus. 

He then gets angry at me that I'm bolusing his feed instead of getting him something to eat. But after we try 10 different foods it's time to throw my hands up and admit defeat. After the feed he feels better and has more energy and his spec his even clearer. This isn't always the case but sometimes. 

I thought that nothing could get more confusing than when he couldn't speak but I was wrong. These days we are both frustrated beyond belief. This frustration opens up the blood gates. All my anger with CDH pours out like a chink in a damn. Once cracked it fails to hold in the water. 

There've  been days when Liam and I hold each other tight  and cry out our frustration and anger. Some days it just needs an outlet. We both feel better after a good cry. 

I curse and cuss CDH for what it's done to my son, to our  family. For the struggles we go through on a daily basis. 

All we want is a little happiness. A chance to forget about how shitty CDH is. We didn't ask for CDH to strike our family. We didn't ask for the pain and misery it brought us. We're just trying to find a way to make it work. Because that's what we do, we survive. 

School Days

Liam loves school. Every school day we show up early. It's part of the routine and routine is important. That and I don't do it purposely. Lanie has to be dropped off first then we drive across town to Liam's school. Today he only had to wait 5 minutes before being able to go into class. 

Are you ready for Liam? Cause he's ready for you!!

School days put Liam in such a happy mood in the mornings. And doesn't he look adorable in that popeye shirt?! Ironic I know since he's a skinny boy but that's probably why I like it. 

At pickup I snuck into the room so I could watch him interact with the other kids and teachers. 

Today they were singing a song about a whale. Last wensday it was circles. (There are other kids there but I cropped the picture where they wouldn't be seen)

Liam loves music time. Today he seemed a bit tired even during this time. 

Liam made some art work today. It's so exciting to finally have art work come home from him to hang. 

Wensday they worked on hands, counting fingers. 

This came home today but was worked on wensday. 

Today they focuses on feet and counting toes. 

Try actually traced Liam's shoes to make these. Even thought this is his shoe size his feet are much smaller. His shoes just have to be big to accommodate the braces. 

I love having art work to show off. 

After getting home Liam spent some quiet time playing in his room. I had just changed his bedding this morning. 

Have I ever mentioned what a lucky little boy Liam is? For his birthday he received not one but two Thomas the train blankets. Liam loves Thomas the train so when I changed his bedding this morning and took the last Thomas blanket off his bed I decided to put another one on. This made him very happy when he came home. 

Liam would carry both blankets around the house every day if he could but he's been good and settled on snuggling with them in his bed. 

We've been so blessed that Liam has come so far. We know it could have been way worse than it was. We love our monkey boy. 

Surviving through the horrible threes

We've all heard of the terrible two's. Most of us are even warned of just how terrible a child the age of two can be. But were you aware of the horrible three's?

I never heard of this until my son was 2 1/2 years old. My daughter went through terrible two's and we both managed to get through it unscathed. Things were fine until she was about to turn 6 years old. Now she acts more like a 16 year old  during THAT time of the month!! But that's another story. 

No one warned me of just how bad a three year old could be. Not until it was too late. My sweet loving little boy? Really? I doubt he could turn into a monster. Not the same boy who even at age two acted as if he was a one year old. He hadn't even gone through terrible twos how could it get worse? 

Well right around his third birthday so many things changed. His attitude was a major one. My sweet little boy turned into a monster over night. I say that figuratively although in the midst of a three year old fit I have my doubts. I am shocked every time he has one. 

If he doesn't get that toy (or 100) he wanted in the store he throws a earth shattering scream at the top of his lungs people looking at me like I hit him kind of fit. My jaw will instantly drop to the ground in utter shock. Could this really be happening? Yes yes it is. 

Those kids that's come through my line when I was younger and didn't know better, the ones that cried and screamed because their parent refuses to spend a few dollars or even less on something they wanted. I couldn't understand why they didn't just buy them what they wanted to avoid that outburst. I mean really what's $1 gonna do? It'd give you peace and quiet. 

Oh how naive I was back then. I mean seriously I thought those were one time incidents so I figured why not just spend the $1. I saw no harm in it. I told myself that my child would never behave that way and that I'd spent the $1 for peace sake. 

Boy was I dumb! Young and dumb. Younger me was so naive. My kid has been that crying kid in a store because I refused to purchase a dollar toy. I fact it just happened 3 days ago in a dollar store. I refused to buy Liam a cheap train with tack because it looked like it would break before ever getting it out of it's package. I felt it a huge waste of money so i offered him match box cars instead. 

What happened? Screaming at the top of his lungs. I was shocked even though it has happened before. Instead of handing him the train and buying it I walked away from the toys and checked out. Nope I was sticking to my guns. Why? Because he does this every time we say no. 

I finally realized why those parents would tell their kids no and it would lead to melt downs. This was the reality. All kids throw fits. All parents either stand their ground till the child learns or they give in and this behavior continues. Seeing as how I want the behavior to end, I refuse to buy anything when the fits start. When I say no it's no. Not throw a fit and I give in. 

I finally understand that this isn't being mean. It's called being a parent trying to teach their child how to become a thriving well adjusted human being. How would I look at age 31 throwing a fit in the store because I couldn't have that Barbie doll? Ridiculous and crazy right?! Well that's what we want to avoid.

Granted he's still my sweet, loving, oh so adorable son. He just throws fits. Now to clear the air, this doesn't happen every time we go into a store. In fact I was able to take Liam shopping with me the other day and we just so happened to walk down the toys. I thought I'd test his restraint. Mean right? Not really. He needs to learn and I was walking down those aisles with purpose that did not include a new toy for Liam but a present for someone else. He kept saying things like "Oooh cool" and "look mom look cars". I would very gently tell him "No Liam we aren't buying that today" and was blessed with a drawn out "okay mommie". His voice was a little sad but he understood that today was not the day.

After walking down every toy aisle without one fit whatsoever I felt relieved and so so proud. I even wanted to reward him for his restraint so ended up buying him 2 .97cent hotwheels cars. I should of had more restraint but he had been so good I thought he earned it. These are the behaviors we want to reinforce right? So whats the harm in rewarding him for being good? I can't tell you if the reward helped or not because me being me reverted back to my old ways of giving him what he wants while in the store then discretely asked the cashier to hide them from him sight because we didn't want them.

I think the biggest lesson here is that our behaviors can and will cause our children to behave a certain way. As parent's we should stick to our guns and not buy our children everything they want but reward them when they do good. This is a hard lesson to learn, and the habit of spoiling our children is hard to break. That being said I spoil the heck out of my kids. Why? I thought that was what parents who love their children do. That's simply not true. You can love your kids and not spoil them to the point of disaster.

I guess now that Lanie is 6 and Liam is 3 I'm finally catching on to this disastrous behavior. With the recent developments in Lanie refusing to clean her room, Liam telling me no, and me having to clean up after them I'm realized I did it all wrong. Birthday and Christmas presents have always been 10x bigger than they really needed. The random buying of toys just because hasn't helped. In fact it's done my bank account some damage. Why am I broke all the time? Because any bit of pay that doesn't go to bills tends to go to toys, new clothes, new movies and books. Whatever they want.

I'm not saying laying on doing them stuff for one month will make a big difference because it won't. But when you look at the long term effect of these habits it's just shocking how much money is basically wasted. I am highly guilty of spoiling my kids and going without to get them whatever they want not just need. The light bulb went off in my head yesterday and I realized that I've been doing wrong all  these years. Sure my kids love it but where has it got me?

Broke and having to deal with huge fits being thrown when I say "No" to buying something for Liam or Lanie (but mostly Liam). Starting now I'm going to try to change these habits and see where it gets me. The money I would have spend on something they wanted is going into a jar and we will see how much I can save up. Hopefully I can re-teach my kids and fix the issue of the colossal fits. 

Untainted Joy

I see other kids Liam's age and I can't help but compare Liam to them. I mean let me honest here, it was a knee jerk reaction. 

"Awe look at your kid running, that's so awesome" Why doesn't mine run?

"Awe she/he just said the cutest thing" I have to decode what my son says. 

"Wow she/he ate all their food!! And wants seconds, sure sweetie here you go" I'm lucky if my kid take 3/4 bites of something. 

Yep knee jerk reaction. I just couldn't/can't help it. Yea I understand the difference between a "normal healthy" child and well mine. He's in a category all by himself. Atleast that's how I felt. There were few others in the category with him but none close and none we've met. Two, maybe three, at max 6 kids.

Other tube fed, cdh survivor or medically fragile child I've followed either doesn't have their tubie long, doesn't eat at all by mouth because they're basically paralyzed or have severe gastroparesis, or eat their hearts out and still don't gain weight (meaning eat everything in sight).

I really thought Liam would be in the 'eat their hearts out and still not gain weight" category. Really did. Nope. Instead my son eats when the mood strikes and doesn't give a hoot to eat on a sched. He's also extremely picky. Yet this kid will stick anything and everything that is not food in his mouth. Yea not fun to wrestle non food items out of a child mouth who have a mouth full of teeth and knows just how to use them!! 

Anyhow I'm getting off topic and not saying what I really wanted to say.

There were times people would post about how their child got their feeding tube removed and how happy they were. The same people would barely post about their tubie journey or give insight to just how they got their once none eating child to actually eat. It's quiet frustrating. Here I am trying to spread awareness about all thing CDH related including and not limited to feeding tubes. 

But still. I congratulated them and on some level was very happy for them and especially the child. Woo hoo tube free!! Amazing. And it is. It really really is. Honestly. But on some sub-level I was dismayed. Disappointed that after all my hard work my son still has his tube and still refuses to eat more often than not. And everything revolves around spaghetti, noodles, Doritos and French fries. Oh and at times fruit snacks and maybe once or twice a month dry cereal. 

But even offering the go to fave foods he still refuses more often than not. And do I really want him to live off those items? Not really. There's not enough nutritional value. 

So you can imagine my frustration (or I hope you can). I've resigned myself to tube feeds, sticky stinky formula, getting up for feeds through the night, having to put the tube in when it comes out, tube infections and fight over food. Yea I'm resigned. It is what it is. 

But today. Today I had a complete different reaction. It was a knee jerk. There were no "why won't my kid do that?" Or anything else. My reaction was pure, unfiltered happiness for someone else's child's accomplishments. I was truely happy for this little boy. And for his momma. 

I was actually taken back by my reaction of pure simple happiness and joy. This was the first time I didn't think about how I wish it were me posting this and not someone else. Nope. Not once. And do you know how that made me feel? AMAZING! 

Truely utterly amazing lifted up in a cloud of happiness. 

I was truly happy for someone else's bliss and improvements.

It felt like a weight being lifted off my chest. Some people don't realize how very stressful it is to constantly worry about your child's health and improvements. Most people never have a reason to have to constantly worry. It takes a toll on your body and your mind. 

It can drive you to the breaking point. To a point where your not sure you can ever return from. And to never be 100% happy for someone else without thinking "why not me" or "why not my kid". It's draining. 

But today I've reached a new platou. Life looks a bit brighter. The sun is shining a bit brighter. Everything has a bit more color to it. I can breathe a bit deeper and smile a guinuine smile that hardly makes an appearance. Yes this is a great day. 

I know a lot of people who if the read this would probably be offended by the fact that they never knew I wasn't completely guinuine when I said I was happy for them. It's not that I wasn't guinuine because I was, but it was tainted by...by jealously I guess. Or maybe it was despair at my own situation I don't know. But they would take this wrong. Twist the words and manipulate it until it's ugly. 

No I was happy for you but yes it was tainted but the tainted was more for my life than yours. Yes I was happy for you bit I wished mine could be doing as well. For a girl whose lived her 31 years on this world filled with more misery than anyone could ever guess, you have to admit that if I can still feel happiness for someone else after all my misery that that's HUGE. Maybe in a way I've been overly happy and overly giving to others to maybe make up for that. I don't know but that's for another post. 

When I saw this picture of a little boy whom I've been following for years now, eating corn, I was overcome with joy. Pure untainted joy. And when his momma told me all he had eatin for dinner my jaw dropped and instantly I wanted to reach into the computer and hug this little boy and his momma. 

This little boy is a CDH survivor and has basically traveled the same exact road Liam had. I bonded with this momma over it. I gave advice where I had the wisdom to share. I prayed for this little boy and his momma more than I can count. I sent his big sisters hair bows. 

When I saw this post about this little boy eating I thought:

Way to go momma!! Wait to go P!! You did it!! 

Pure unedited, untainted joy!! That felt better than anything. 

You learn so much by following others journeys through life weather it's a medical journey or not. But I believe you learn more following those who've had to fight for every breathe they take. They see live differently and are unashamed in sharing how they feel about what they've been through because it's made them who they are today. They appreciate life more. Same can be said for the families of these people. Some cases touch my heart more than other.

In the case of baby P, his story just captured my heart. Not just because he and Liam have the same birth defect or that their journys have been so similar it borders on scary. No two CDH kids are alike. Each one is different and follows his or her own path. There are probably none two as alike as Liam and P. And that fact did help to capture my heart and make me feel close to his momma. But when I looked at his face and into his eyes I felt I could see a peice of his soul. Same as with Liam. Some babies are like old souls and their eyes shine with just love, knowledge and wisdom. Their eyes seem to see into your very soul.

When I looked into baby P's eyes (via pictures) I felt this. Just as I had with Liam. It's like theres an instant bond and you feel connected to these kids. P reminded me of Liam in so many ways I just felt connected to him and therefor his momma. And like me, how I love Liam, P's momma just loves P to peices and wants the best for him. How could you deny a love like that? 

You could tell me a thousand times my son ate a whole meal and I wouldn't believe it unless I saw it. When momma posted a picture of baby P eating corn on the Cobb and mowing down, I could just see the utter joy in this babies eyes. I could (or imagine) him in his cloud of happiness just chewing away. I instantly light up like fireworks. My brain pumped out so much serotonin it was crazy! 

This picture below...this picture makes me feel total untainted joy. And for that I am so greatfull. Because of this I have reached a new platou in this journey where I no longer think "why not my son?". 

(Picture taken by P's momma and shared with permission) check out his FB group 'Baby P (fight the fight little man)

Why not my son? Because it wasn't his time. It was P's and that's something we can rejoice and celebrate. 

I say completely overjoyed and untainted:

CONGRATS BABY P!! YOU DID IT!! YOUR AMAZING!! 

And momma your doing an amazing job!! I know how hard the journey is to get your tubie to eat but you overcame than with hard work and dilligance. You never gave up. That's inspiring to all of us other moms working on getting our tubie to eat a substantial, or even unsubstantial amounts of food. Think about it for a minute. YOU did this. Your hard work is the reason he's eating. You may have a few stains on your shirt but you made it through the food fight. This is the start of a new chapter for you both! You deserve a round of applause 👏, a high five ✋, two thumbs up 👍👍...or maybe a cup of coffee ☕️. 

I don't normally go out on a limb and do this kind of post but you inspired me. I know I helped you through some rough times and you helped me through some rough times, but when I was starting to feel like giving up you inspired me to keep at it. You also helped me grow as a person just being able to follow P's journey. For that I am so thankful. Because of you I can now be joyous for others and untainted. 

You go momma! 

18 Days Till I take Flight

Flying Giraffe's! Oh my!!

In just 18 days  I will be taking flight but I don't expect to see any flying giraffe's. The only thing

I expect to see is lots of family, and not through a window either! After all this is a family reunion 20 years overdue.

My eyes cannot wait to see my Grams, Uncle, Aunt and cousins.

My arms cannot wait to fling themselves around them in a tight hug.

My brain cannot wait to soak up all the info I can to know them.

The last time I flew I was very young.

I have snitbits of memories of an airport and of sitting in a plane.

A plane I never thought even took off the ground.

In preparing for this journey I've had to learn a lot.

I had to read all the rules and regulations for flying.

I didn't realize there were so many rules of what you can't take.

Your only allowed so many ounces of "chemicals".

Shampoo's, conditioners, mouth wash and more.

No weapons, blades or razors.

This includes razors you'd use to shave your legs.

Wow!

Just wow!

Has this really happened here in the USA?

Yes it has and for good reason.

I am thankful that I had the brains to look this up.

What else did I have to look up?

Well luggage was an important one.

If you haven't flown much or at all you'll realize late in the game that you have to pay extra for luggage.

There is also a size limit on said luggage.

Your allotted a suitcase measuring 16"w x 24"t x 10"d.

It seems small when looking at the dimensions but I realized quickly while searching for a suitcase that its not too bad. I can fit everything I need and more in the suitcase I ended up with, and its smaller than these dimensions giving me a wiggle room of almost 3 inches on each side. That way I know when I get there that it will fit no matter what.

 

I'm not one who is willing to pay out a lot of money for well anything. I first tried to borrow so I didn't have to spend any money at all but no one had anything with the measurements I needed. I looked at Target and was a bit shocked at how expensive luggage was. I mean really, 199.99 for a suitcase?! Granted it was one I could fit into (I'm only 4'10" i could fit almost anywhere) but still. They did have a 3 piece luggage for $39.99. That seemed reasonable but it was still more than what I was looking for. I ventured on to the kids luggage, I mean seriously does it really matter what it looks like? They had one (well 1 boy and 1 girl) that was the right size for $23.99 but that was still more than I wanted to spend before looking around.

I left Target and went on to DD's. My niece was in search of shoes so I figured since we were going there anyway I should look to see what they had for luggage. I was pleasantly surprised by the array of suitcases they had in stock. I choose one of the smallest ones they had in hopes that it would fit within the guidelines for a carry on. I got lucky and as I said I had about 3" on each side so I knew it had to fit. So now I  know you're wondering how much I paid for this pretty purple suitcase on wheels with a extending handle. I paid a whopping $15.99 plus tax! You can't beat that for something new.It's sturdy and feels strong. Nothing about it screams "cheaply made" which was another concern. I didn't want to pay for crap.

Another obstacle I have to face now is fitting enough clothes for 4 days in this thing. Luckily I had my brain working while I was out searching for luggage and thought to get those bags you compress the air out of so spare room. I figured if I pack lightly and used these that I would have plenty of room to bring the kids back a few surprises if I found anything while there. 

Your also allowed a personal carry on. This can be a purse, breifcase, computer bag, whatever as long as it fits within strict dimensions. 18"w x 14"h x 8"d

I figure I can take the biggest purse I have if I don't have enough room in my suitcase for my camera and what not. 8" depth is not very big but again I was surprised when one of my biggest purses fit those dimensions. I can fit a lot in that purse!

So now that my luggage problem has been solved I have so much to do to get ready. Only 18 days. These next 18 days are filled to the rim with things that need to be done. School shopping is thankfully done. I've got doctors appointments for Liam for shots and tb test. His button looks infected so that will have to be looked at. We have school meeting to attend and things to get in order before I can leave. Thankfully Lanie and Liam's first days of school are different so I can be there for both. 

First Cuddles 7/28/11

3 years ago today was the first time I ever held Liam in my arms. I had waited so long and felt it would never be possible. But it was possible and exactly what I needed that night more than anything in the entire world. And once I held him I didn't want to put him back. But as exciting as it was to hold my dear sweet little 5 lb 18 day old baby the memory will forever be marred and tattooed on my brain forever. If you look at the top view of him you can see why but for those you don't see I'll elaborate. Liam wasn't ready to fly. They had just taken the feeding tube out and put him on cpap. He wasn't ready. And even though after a mere 5 min cuddling my son we had no choice put to put him back in his beg and call for respiratory. Liam wasn't getting adequate oxygen and was turning blue, slowly suffocating. A nightmare I still get to this day. They tried a different setting but before 24 hours on cpap he had to go back to the breathing tube. He just wasn't ready. A few shaky breathes later and I resigned myself to be ok with that. To accept it because there was not else I could do and I'd rather have him here with me than not. I realized then that fear can be just as strong as love. And just like love it can over take you completely even over ride love if your not careful. My love meant more than my fear. I let my love for him shine through every minute of everyday hoping that he would feel it and fight harder. I thank God everyday. 3 Yeats ago today and I still cherish every hug, kiss and cuddle as if it was the first. #cdh #cdhsucks #ihatecdh #survivor #love 

7/27/14 Selfie OP and a new Loose tooth

I was just laying here minding my own business with a pillow on my lap when Liam decided to climb up on the bed and settle himself between. My legs with his head on said pillow I say that's a selfie opportunity. 

Liam is doing very well after his mediport removal surgery. Today we've just been hanging around the house. Liam's playing with his cars, trains, books and playing his games. 

On an exciting note Lanie has her first loose tooth! Last night she was thrilled she had her first loose tooth. Today however she's singing in a whole new tone. 

Today she says her tooth is really sore and that it hurts. She's sticking to soft foods and chewing on the side of her mouth. She can't wait until it comes out so she won't hurt anymore. 

3 Days Till 3

In just 3 days my little lamb will be 3 years old!

For almost 3 years he has defied the odds.

Survived and overcame all that was thrown his way.

He is our miracle.

Today we took Liam's 3 year old pictures.

His outfit was carefully chosen.

The backdrop was perfect.

But since life isn't perfect and neither are we,

Liam choose not to smile for his 3 year old pictures.

He seemed confused over the ordeal.

The pictures came out cute none the less.

We also decided that since we were taking pictures,

we should take really good family photos.