Handmade

These days it's so easy to forget the true meaning of Christmas.

We loose sight of what's important,

and our main focus become gifts.

We have a long list of who we need to buy for,

and for most of us,

a short budget to do so.

We go out searching for the best bang for our buck,

and a lot of people are willing to sacrifice some very important moments with their families.

Thanksgiving has gone to the way side.

People push it aside as if it wasn't an important holiday,

all for the sake of searching out the best deals for Christmas.

It happens every year and is only getting worse with each passing year.

Do we even remember what Thanksgiving is?

Thanksgiving is a time we are supposed to gather with family.

Contemplate and share what we are thankful for,

and how we've been blessed.

We gather,

make great food together,

eat said food,

and create memories to last a lifetime.

No Thanksgiving is ever the same.

Every year the little ones grow,

gracing us with a new years worth of crazy joy and laughter.

We will never get another chance to recreate these memories.

To give up these precious memories all in the name of shopping..

is just plain sad.

This society is now spending their Thanksgiving,

a day to be thankful for what we have,

to face the crowds and fight over material things that just won't matter in a years time.

So I offer you a new idea.

Or a "recycled" idea.

Handmade gifts.

Let's get back to enjoying the holidays,

spending time with our kids,

and reminding them what these holidays are all about.

Family.

God.

Togetherness.

Let's put a little more time into our gifts,

a little (a lot really) less money,

and put some more magic back into our lives.

I'm enjoying spending time with my daughter creating things out of "nothing".

We've been knitting scarfs and hats.

Instead of buying clothes for my daughters "American Girl" dolls,

I've been making them.

Of course I haven't been able to keep them all secrets,

so she has seen a few things.

She thinks they are for someone else,

but her eyes still light up in joy and wonder.

We are making memories together.

Bonding over each new creation.

Even when things don't turn out perfectly.

Try something new this year.

Create something with your kids,

and create memories to last a lifetime.

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.

Tantrums, Tangents and Turmoil

Tantrum's, tangents and turmoil have been the theme of today. I'm at my wits end and just want to escape today. 

Liam has discovered tantrums. You say the word "no" and he goes of the deep end. Starts a crying screaming fit that results in retching and him running to his bedroom to get even louder. It's not even 5pm and he's had 4 tantrums today. On one hand I am thankful that he is acting his age and able to throw such fits. On the other hand, I just want some peice and quiet. 

Just about everyone is going off on tangents today. Justin over the fact that some one backed up into his truck and that it's in the shop now. Luckily their insurance is fixing it but that isn't doing much for his anxiety so every little while he's going off. 

I've gone off on a few tangents myself today. There's just so much going on right now. I'm stressed and just need a break. If love a really good pair of noise canceling head phones. 

The country is in turmoil with the Brown case in Fergusson MI. It's upset so many people, understandably. People are grieving on both sides of this. It's a tragedy but we can't use a tragedy as an excuse to riot, vandalize and loot. Don't cause chaos because it will only make the situation worse. 

Rioting, vandalizing and looting won't change the grand jury's decision. All it will do is take presidence over the actual problem. Everyone will be so focused on the riots that the cause of this turmoil will hide in it's shadow. Please, use your voice and your words. They will go further and make more of a difference than this chaos will. 

I believe that we should not be treated differently based on our skin color or our religion/beliefs or sexual preference. We should all be treated equally. I believe that just because a situation involves both a white person and an African American person that it shoudnt be automatically considered a race issue. It's unfair to all sides to consider these issues a race issue.

Let's stop making everything a race issue. Let's start treating everyone how we would want to be treated. Let's treat everyone equal. 

Liam's 1st Thanksgiving Class Party

Today was a day to be thankful for. 

A day filled with surprises and excitement. 

Today I joined Liam's preschool class to celebrate Thanksgiving. It was amazing, and fun, and exciting. I am truely thankful for the blessings we received today. 

The kids made Thanksgiving hats to resemble the Indians head dresses. 

All the peices were already cut but the kids got to do the glueing. Liam needs some extra help because he can't squeeze the bottle. Teacher Joe (pictured above) is really great with him. Liam got to place the "feathers" anywhere and however he wanted. I love it. 

Here he is sporting his awesomely amazing paper head dress. It turned out awesomely, amazingly, perfect. (Yea I'm partial). 

I got a shock of a lifetime during the actual party. For these parties, all the teachers being something for the kids to eat and all the parents do too. He ate his Gerber puffs that he magically decided to start eating wensday. Then he ate part of a cookie. 

If you know Liam, then you know he only drinks water. For a short period of time a year ago or so I was able to get him to drink watered down milk. But that was short lived. Well today teacher Joe game him a apple juice pouch because Liam expressed that he wanted it. I explained he only drank water but I didn't mind them trying as long as they didn't get mad when he didn't drink it. 

What does Liam do?

Make me out to be a liar!

He drank at least half of that apple juice box. We were all surprised. For the first time they realized just how momentous and special it was when Liam would try something new. To drink anything other than water was momentous. We all celebrated. 

Blessings come in all sizes. Even the "little" one can be the biggest. Today on the 21st day of November, I am thankful for Liam's preschool teachers and classmates. They've shown Liam how fun trying new things can be. Sure sometimes those new things aren't what's best for him or right at that moment but we can't be scared to try and grow. 

Ignorance is Not Bliss

Today is somber. Today a fellow CDHer is being laid to rest. Many others fighting for life. CDH families are left heartbroken, devastated and lost. Those with survivors feel guilty because their baby survived when so many others didn't. Parents of survivors are being judged because their child isn't "normal". I read a heartbreaking post which in simple form stated "ignorance is not bliss". I got to thinking. No it's not. It's hurtful. You may say something, thinking your helping when in turn your actually hurting. It happens daily. We just don't realize it. Having a little girl turn her head so you can't see her feeding tube and saying "now we can't see that thing on your face, and your pretty like a real dancer is supposed to be" (part of the article I read) isn't helping. Instead your breaking a heart. It's happened with Liam on many occasions. The other day a lady looked at Liam when he coughed and said "oh she's sick too. It seems all these babies are sick right now". I was furious. I had had enough. I was tired of judge mental people and I let my temper get away from me. I looked at her with a smile that wasn't really a smile and said "no, HE has chronic lung disease" in a sweet voice. I couldn't help it. Her and her husbands face dropped. She couldn't filter her response fast enough. She apologized and it seemed "sincere" until her, her husband and the little boy with them high tailed it away from us as fast as they could. It was like they were afraid they'd catch it from them like you would the flu. I could only shake my head. They had treated us as if I had said Liam had Ebola or some other highly contagious disease. You see, because these people didn't understand, because they were "ignorant", they were hurtful. It happens all the time. So please, don't judge the mom with a coughing kid whose out in public. Or the one whose checking her kid for a fever. Or one with a feeding tube. Or a kid on oxygen. Or a kid without hair or scars everywhere. You don't know the situation. These kids just want to be treated like every other "normal" kid. They don't want attention brought to their differences. And the parents don't need any more stress than they are already under going because taking a kid out with medical problems is stressful enough. We do it because our kids beg. They want to do "normal" things and we don't have the heart to continually break their hearts. ❤️❤️❤️ #cdhawareness #chroniclungdisease #thinkbeforeyouspeakoract

Social Butterfly

Today was a school day for our little lamb. Even though he's been going to school for 3 months, it's still so hard to believe. He's growing. He's relatively healthy, the healthiest he's been in his entire life and more importantly, he's happy. For the first time he has friends. Friends he made on his own, at school. He knows their names, and calls them by them. He says "hi" every school morning and "bye" to them at pickup. He comes home talking about them. He randomly talks about them all week long. I was worried our little lamb would have problems socializing, making friends and getting along with them. Turns out I had nothing to fear. He's a social butterfly, learning to get along with others, make healthy friendships and use his imagination to play with other kids his age. I am so proud of him. When I think back on a time I wanted to pull him out of preschool because it was just too much, I shutter. Because look at him. He's doing amazing. I am proud to be his mother. #cdhawareness 

Painfully Faithful

Today was one of those days. Lately I've been having a lot of them. I just have no energy. Today it was a no makeup, slip on shoes without socks and thrown together kinda day. As one of my fave blogging moms would put it, I was a "walking yardsale" today. 

My feet have been so sore lately. Walking is a difficult task but one I must do a lot of. I find myself limping and then agitated that I am doing so. I've actually been getting more sleep the last few days than I have in years, yet the circles under my eyes are growing and getting darker. Sometimes I feel like my body just wants to shut down and I have to fight against that. 

My brain has been in a fog. Thinking is a difficult task. Remembering has been worse. Every time I try to talk my brain stops working and I can't remember what I was saying. It's getting worse and noticeable to others. And oh so embarrassing for me. 

Today was one of those days my debth perception was off. I can into a wall this afternoon. A few days ago I hit my head at the doctors office just bending down to grab something. It's been interesting, and not in a good way. 

Thanks to Timehop, I know that my pain has gone back 5 years. Every year worse than the last. The diagnosis of fibromyalgia still sticks with my doctor. I've tested neg for lupus twice now. Once last year (thank you Timehop). 

My problem with this is lupus fits. 

Raised rashes

Sensitivity to sunlight

Sunlight causing rash

Swelling throughout my body

The pain can be caused by either. Plus my pain is better on steroids and steroids do not help fibromyalgia but it helps lupus. 

I'm just confused and sick of being in pain. I don't care what they label this, I just want the pain to end. 

There was a time when I thought I couldn't handle anymore test, that I felt my plate was full. I felt I was at my max taking care of a medically complex child. One who've I prayed for his health everyday and have even begged for me to take his place. I was willing to take the pain and the health problems as long as he was healthy or relatively healthy. Years I asked for this. 

Then slowly Liam started getting better, healthier. And I started getting worse. I don't believe that God is vengeful. I believe he is loving and kind and forgiving. The devil however will always kick you when your down. Use your weaknesses to try an shake your faith. I don't believe that just because I prayed for God to give me the pain and Liam to be healthy that he decided I should spend my days riddled in pain. I believe he gave Liam strength and made him healthier though. And I believe the devil decided to try and shake my faith by putting this on my plate. 

I don't spend every minute of every day wallowing in self pitty. Honestly I just try not to think about the pain. I find myself silently praying a lot through out each day. Just praying to make it through the day. Praying for strength. At the end of the day I thank God for making it through that day. 

This pain hasn't shaken my faith. It's strengthened it. There's a bright light in every dark situation. If you only open your eyes and see it. I thank God that my son is doing better. That my daughter is healthy. That I have a husband who loves me. When it's all said and done, I will take this because it could always be worse. 

Christmas Sensory Bin Ideas

Liam still has sensory issues at 3 years 4 months.

We've worked very hard with him to work through these issues,

and hard work is the only reason he's doing as well as he is.

For the majority of his Liam's life,

he hated textures.

If it wasn't super soft he refused to hold it.

He hated the feel of playdoh,

sand,

uncooked rice and noodles.

We worked past this by playing with these things over and over again.

We still have a lot of work to do.

Sensory bins are awesome.

I love how there is so much in such a small area.

It's meant to stretch their ability to be handle the stimulation with each passing use.

With Christmas coming up I thought to do a Christmas themed sensory bin.

In my Google search I found many I like.

This winter themed sensory bin is so simple and cheap.

Everything in it came from the Dollar store and added up to $5!!

I adore it. I found this at Snails and Puppy Dog Tails Blog.

She has several amazing sensory bins that I am looking forward to making for Liam.

This snowy sensory bin looks like so much fun!

We found this gem at Blog Me Mom

I feel like this is a two for one deal.

Not only so the kids get the sensory aspect out of filling the ornaments,

but when they are done,

you get some great ornaments for your tree.

I love that they used beads as well as sand to fill these up.

It gives me a great idea to use other materials as well.

I found this AMAZING idea over at Little Bins For Little Hands.

Love this sensory bin.

It has some of Liam's favorite things.

Found at Four Little Piglets

We are already so excited for Christmas!

Can't wait till closer to Christmas to do some crafts with the kids.

Easy to Forget

Sometimes we look at all the good and we forget about the bad. 

I post so many pictures on Facebook of a smiling, happy, seemingly health Liam that it's just so easy to forget that there is a little boy behind that smile that has fought for his life and that still fights for his health and happiness. 

People see a few smiling pics and they forget. It's easy to forget. I've gone through Liam's page and realized how very normal he seems. Yet the truth is he's not normal. He's extroadonary! 

He's a superhero with strength beyond our reach. He's a little boy who refuses to slow down just because he's having trouble breathing. He's strong willed and fights his tube feeds because he just wants to be able to eat and run and be normal. He's a little boy who still needs his Mommas hugs when he's trying so hard but in his eyes failing. 

Your never failing Liam, as long as you try. You don't need to be normal because you are so much more than normal. Your extroadonary and everyone only wishes they could be half as awesome as you! My little Liam, be proud of who you are. Never hide. God has a plan for you, you will see one day. Just be patient. Be kind. Enjoy being you. I know it's hard sometimes and you get so frustrated you just break down crying, but we will make it through every obstacle as we've always done...together. 

My feelings for him growing up are so mixed and confused. It feels like it's been forever since he was born, not merely 3 years and 5 months ago. Yet it feels like it was only yesterday and that we've been cheated out on so much. On one hand I want so desperately for him to catch up to a normal height so he isn't so small compared to the other kids. Yet I am secretly glad that he is growing slower so I can attempt to get back the time CDH has cheated us out of. However there is one thing I am never confused on: I always want him to be healthy. 

3 years ago yesterday we celebrated Liam reaching the 10lbs marks. 

It was such an exciting moment. I remember crying in the doctors office after he was weighed. Finally after all the struggles to get him to eat, it took a nissen fundo and a gtube for him to gain weight. This was the moment I knew 100% I had made the right choice in letting them give him a gtube. 

A few weeks ago he stepped on the scale at my doctors office and it read just over 27 pounds. It took 3 years to gain 17 pounds. He spent 2 years unable to get past 20-23 pounds. It was a hard time for everyone. 

There's so much my little superhero has accomplished. Things that we weren't sure would be possible. He didn't walk until right before his 2nd birthday. He didn't even crawl till about age 1 1/2 years. We've come far and I am happy that it's easy for most to forget he has medical needs. Finally people are able to see what I've seen all along, a sweet loving little Liam. 

Klumsie

Christmas magic is continuing here in our home. It started with Elfies blog that Lanie loves to visit and is continuing with Reindeer on the Roof. We adopted this last year on clearance so this is our first year using it. And since Lanie and Liam can't stop talking about Elfie and asking when he's going to come back, I decided no better time than tonight to open this guy up. And make the Christmas lists again. 

The kids thought he was great. They love that it came with a book and a barn. Once you write out your Christmas list, you secure it into the reindeers saddle. Then you put the reindeer on the roof of his barn and while the kids are sleeping it "magically takes off" and takes their list to Santa. 

We went online to register our adoption of a ROTR. We loved that on the front page a reindeer comes flying in and crashes into the computer screen causing it to shatter. From there we entered he code that came with our ROTR. We also got to name it and choose the color of digital reindeer. We named ours Klumsie. 

(Note: we did have technical issues with the website actually loading and saving our info but the kids for the just of it for now.) 

Now Klumsie is currently waiting for the kids to sleep so he can go on his magical flight and deliver the kids wish list to Santa. They just have to wait and see if Santa writes back. 

Strep

Lanie and I are both recovering from strep throat. I had such a bad case of it that my throat was very swollen. They put me on prednisone to get the swelling down. I learnt something while on the steroid: the steroid took away my fibromyalgia pain. I had a few blissful days of no body pain. Just the strep. The last two days I was able to get a lot done around the house that I couldn't get to before.

Sadly my last dose was yesterday morning and the pain is comming back. It's worth talking to my doctor about. 

I've also been breaking out Into a butterfly rash with just about anything I eat or drink. It's crazy. But I have to say that those few days of no body pain was amazing, even if I felt sick. 

Lanie is recovering just fine. She never got as bad as I did. I'm glad because it was horrible. Liam and Justin went unscathed by it. 

Liam is still only tolerating his night feed until 4am. I tried again last night to extend it but he started vomiting at 5am. He is only handling 8 hours of the feed versus the 12 they want him on. I'm officially putting my foot down to say enough is enough. This is what is working so this is what we are doing. We can't put a watermelon into a lime. 

I was reminded that these situations have come up in the past over Liam's tube feeds and every time I stood went with my gut, things worked out like they should. So I'm going with my gut again, and my gut says to stop trying to increase when he just can't handle it. Stop trying to increase feeds to try and increase growth you said was good bit because it was working you wanted more. More is not in the books this time. Liam's body says so. We all must learn to accept that there's a time to wave the white flag and and a time to charge on. This is a white flag occasion. I'm ok with that. Or Atleast I understand this is how it has to be. I won't push for more just to loose what we've gained. That's what happened here. 

Not anymore. Liam is who he is. He's good the way he is. He's growing. We need to leave well enough alone for awhile. 

Lanie's reading is soaring to new heights. I am so proud of how well she is doing. I spent a lot of time trying to build her confidence in reading and it's paid off. She reads daily at home. Usually 3-4 short books to her brother, then part of a big chapter book with me. She's even put books on her Christmas list. I found a few of the Ever After High stories on amazon for free download so I downloaded them for her. She's really enjoying them. We stop every so often to make sure she's grasping the story and to talk about what's going on. It's important she understand the story and not just the words. 

Liam sees her with books all the time so he started getting out his books to look through them more often. I love it. It's important to teach them early. I've read to both my kids since they were in my stomach.

Life has so many hard moments where we struggle and sometimes it's so hard to see the bright side. I've been trying so hard to see all our daily blessings. How far we've come and where we might go. Life is as good as it gets.