A New Year's Resolution

A New Year is almost upon us.

Have you given thought to your New Year Resolutions?

Were you successful in your last resolution?

I swore I was going to loose weight and get healthy.

I was doing great until a load of flare ups and worsening symptoms.

This year will be different.

Why?

Because my resolution is different.

I'm not hoping to loose a ton of weight and get skinny.

I'm not even hoping to give something up.

We, as a human race,

set ourselves up for failure.

Most of us anyway.

This year I'm not setting goals that are unreasonable or unreachable.

All I want for the New Year is to survive.

That's the simple way of putting it.

This past year...

Well year and almost 3 months,

have been difficult.

We (my doctor and I) spent 8 months trying to figure out what was wrong with me.

Why I was in so much pain all the time.

Finally he decided that it had to be Fibromyalgia.

We had done scans,

X-rays,

blood work galore,

and nothing popped up.

I even did physical therapy.

He finally started treating me for Fibromyalgia.

The meds helped but didn't make any huge difference.

Most days I couldn't even tell if they worked at all.

He said that I probably had this for years but it went undiagnossed,

He was probably right since I've been in pain for years but too busy taking care of my son's medical needs to worry about my own.

But I questioned him anyway.

He said it was a flare up.

A flare up that lasted over 8 months?

A flare up that a year and almost 3 month later am still undergoing?

In June he left the clinic and I started seeing another doctor.

One who agreed with the Fibromyalgia diagnosis.

Until I started getting more and more symptoms of Lupus.

I've been tested for Lupus 3 times now.

Have had 1 positive and 2 negative tests results.

A neck X-ray that shows that the degenerative disk disease in two disks in my neck have gotten worse since June.

The doctor says someone my age shouldn't be this bad.

Now we're waiting on CT scans of my brain.

There's something more than Fibromyalgia going on.

What it is,

we aren't sure of yet.

My doctor and one he consulted feel it could be a brain tumor.

That's the reason for the CT.

We just don't know yet.

So you see why one of my New Years resolutions are to survive.

I want less pain,

Less flare ups.

Or at least a way to cope with them better.

I don't want to be stuck in bed,

unable to participate in everyday things like playing with my kids.

I don't want to miss out on more than I already have.

I want to get more active because I feel it could help.

I want to find more energy and stamina.

I need to get myself up and moving.

What I want most of all though,

is to find out what is causing all this pain.

That's it.

It's that simple.

Recipe: Fast and Friendly Turkey Meatballs

Ingredients:

2 tablespoons olive oil

1 (20 0z) package ground turkey

1 egg, beaten

1/3 cup Italian seasoned bread crumbs

1 small onion chopped

Directions:

Preheat oven to 350 degrees F.

Grease a 9x13 inch baking dish with the olive oil and place it in the oven while preheating.

In a medium bowl, mix together the ground turkey, egg, and bread crumbs using your hands.

Using an ice cream scoop if possible, form the meat into golf ball sized balls.

Place about 1 inch apart into the hot baking pan.

Press down to flatten the bottom just slightly.

Bake for 15 minutes in the preheated oven, then turn them over and continue to bake for about 5 minutes or until somewhat crispy on the outside.

Serve with pasta or any other dish.

Recipe: Incredibly Cheesy Turkey Meatloaf

          A few years ago we ingrained ground turkey meat into our regular meals. It started with just making ground turkey burger patties and escalated from there. Over time we started using ground hamburger meat less and less until we cut it out completely. We love that ground turkey isn't fatty or greasy and it taste better than ground hamburger meat to us. 

          We now use ground turkey in everything. Chili, meatloaf, meatballs, tacos, name it and we've probably used ground turkey. I feel like I keep making the same foods over and over again and I feel it's time to add some pizazz to our meals. Before today I never thought to look up recipes. I just made the meals the same way I use to except I substituted with the ground turkey. 

          Here's a recipe I found today for Incredibly Cheesy Turkey meatloaf and it looks amazing.

Ingredients:

2 lbs ground turkey

1 cup milk

1 cup Italian seasoned bread crumbs

2 eggs

1 teaspoon salt

1/4 pound colby cheese, cut into 1/2" cubes

1/2 cup ketchup (optional)

Directions:

1) Preheat oven to 400 degrees F

2) In a bowl mix the turkey, bread crumbs and eggs by hand. Season with salt and pepper. Fold the cheese cubes into the mixture. Transfer to a loaf pan and top with ketchup.

3) Bake for 1 hour in a preheated oven, to an internal temperature of 180 degrees F

Now I don't normally use ketchup on my meatloaf. I like to make gravy and drizzle it over my mashes potatoes and meatloaf. I've also made this with soy sauce and served with white rice.

          

Recipe: Chocolate Chip Cookies

          I've always loved chocolate chip cookies. I love them fresh from the oven, chewy and soft. They have to taste good too. I've had some very bad and disappointing cookies in my time. Sometimes I like to use Betty Crocker's mix in a bag. You can find it in the baking aisle. I also love to make them from scratch. Here's a great recipe for from scratch chocolate chip cookies.

Ingredients:

• 2 1/4 cups all-purpose flour
• 1/2 teaspoon baking soda
• 1 cup (2 sticks) unsalted butter, room temperature
• 1/2 cup granulated sugar
• 1 cup packed light-brown sugar
• 1 teaspoon salt
• 2 teaspoons pure vanilla extract
• 2 large eggs
• 2 cups (about 12 ounces) semisweet and/or milk chocolate chips

Directions:

Preheat oven to 350 degrees. In a small bowl, whisk together the flour and baking soda; set aside. In the bowl of an electric mixer fitted with the paddle attachment, combine the butter with both sugars; beat on medium speed until light and fluffy. Reduce speed to low; add the salt, vanilla, and eggs. Beat until well mixed, about 1 minute. Add flour mixture; mix until just combined. Stir in the chocolate chips.

Drop heaping tablespoon-size balls of dough about 2 inches apart on baking sheets lined with parchment paper.

Bake until cookies are golden around the edges, but still soft in the center, 8 to 10 minutes. Remove from oven, and let cool on baking sheet 1 to 2 minutes. Transfer to a wire rack, and let cool completely. Store cookies in an airtight container at room temperature up to 1 week.

Routine

My biggest problem of today is running out of closet space in this tiny closet and still having more I'd rather hang than fold. Thank you God for the simple things, for making every day better than the last and giving more days. 

There was a time when things were so bad when I had to constantly worry about Liam's health, his lungs, tons of appointments and had to keep a bag packed and ready to go for a hospital stay because we never knew when the time would come when we'd have to rush off to Children's. 

A time when I had to have an entire weeks worth of "spare" clothes that stayed packed 24-7. When I had to have extra toothbrushes and toiletries. A time when all electronic I would use while at the hospital would be charged frequently, and placed back into my backpack as soon as I was done using them along with their power cords because staying in touch with Family and friends while there kept be tethered to real life. Got me through hard lonely times. 

Truth be told, I have a toiletry bag in the bathroom ready to go. My suitcase never out of reach and I know my closet and dresser better than the back of my hand. I may not have to keep that bag packed and ready to go anymore, but I know that without a doubt that I can pack enough for Liam and I in less than 15 min and be out that door. Yes, I am that good. 

But it's not about being that good. It's about the years of doing this that I just can't stray from. It's still just too new to have just long periods of time between emergency hospital runs.

I'm a creature of habit. Habit is what gets me out of bed in the morning like a robot. When a wrench is thrown Into my habits, I have...complications. I always thought I was a go with the wind kinda person. I was at one point. I thrived on spontaneous actions. That was all before Liam. I'm not spontaneous anymore. I fear doing something spontaneous will lead to forgetting something vitally important. Forgetting something vitally important will lead to serious consequences. 

I may not keep my bag packed anymore, but if you look hard at my stuff, you can pinpoint exactly where it is I will rushedly grab things in the case of an emergency hospital run. 

My days are filled with meds, tube feeds, fighting a toddler to eat more, laughs, silliness, and what some would call boredom. But it's my routine. This is what I do and who I am now. 

So if my biggest problem of the day, after all I've been through is not enough closet space...I'll take it and run. 

It's Not About Santa, It's About Jesus

(Pictured above is Santa kneeling beside baby Jesus, apologizing and asking Jesus for his forgiveness because he didn't mean to "replace" or over power Jesus and the true meaning of Christmas)

Getting ready to clean the house and I look under the tree at the presents and think

"Why?"

We get carried away when shopping for The kids for Christmas. All we think of is how their faces will light up and the squeals that will insue when they open the presents Christmas morning. 

We get excited at the thought and it drives us to go overboard. We don't think about all the time we will spend trying to get the kids to pick up their toys and clean their rooms. We don't think about the pain or the explitives that will come pouring out of our mouths when we step on tiny peices of toys that were forgotten until that very moment. 

And then we ask ourselves if we are teaching our children right. 

Do the presents and Santa over power and mask the true meaning of Christmas? 

Do they realize the importance of this day?

Do they realize that, like the song from the church play Lanie participated in, you can't have Christmas without Jesus and you can't have Christmas without the cross?

I think Lanie is starting to understand but is it enough? Will she ever know truely? What can I do to help? 

We're guilty of not going to church often enough. Of not showing our children the way soon enough. We are guilty of making excuses. 

In the last 6 months to a year, we've (I've) been trying to change that. I've encouraged Lanie to get more involved in church by participating in the kids programs and making friends who also go to church. I find when you have someone whome you share interest with, like God band church, then you get more involved with those activities because you have someone at your side. It's a start to changing and atoning for the lack of God and worship in the past.

We've always believed in God and taught our kids about all God has done for us but it wasn't enough. Not if presents and Santa ovetbear and mask the true meaning of Christmas. 

We can't forget to teach our children the story of when Jesus was born. Or to remind them what He did for us all. 

(Pictured above is Elfie our Elf on the Shelf wrapped in Santa paper with a book he brought the kids from the North Pole and Santa about the Story of Jesus). 

'Just before Jesus went up to Heaven, he appeared to his disciples and told them to travel to faraway places and teach people to obey his words. "And I will be with you always." Promised Jesus, "until the end of the world."'

(From 'The Story Of Jesus' by Jane Werner Watson, written in a way children can understand Jesus's, birth, life, death, rebirth and love for all)

My NICU PTSD Experience

PTSD doesn't just effect those who've been to war or in the military. We learned the hard way that it effects families of those whose children are born sick and spend time in the NICU watching their baby struggle and almost loose the battle. When I was first told by a NICU nurse that she thought I had PTSD I was confused and asked why she thought that. After talking to her extensively about it, it became painfully true. And even more painfully true as my doctor back home diagnosed me with it as well. It was hell. Reliving the heartbreaking tragic moments over and over again. Flash backs and nightmares. The crying and freak outs. I never knew when I would have an "episode". I am thankful that 3 1/2 years after Liam was born that I haven't had an "episode" in a while and the last few nightmares I had I was able to get through and not let the feelings linger. In a way I feel blessed to have gone through this journey because it has only made me and my family stronger and now we get to concentrate on the present and making up for lost time. We try to enjoy each day for what it is. God gave us a little boy that can overcome anything and a little girl who has learned to overcome anything in her path and loves with all her heart. We could have walked away from this sad and miserable but we choose not too because life is too short. We choose not to let the bad take away the good. The first year was the hardest. The second came real close. His third year has been a complete different experience and for that we have to be thankful. If you aren't thankful for what you have then you don't deserve to have it. I won't say that I'm 100% PTSD free. I don't think I will ever be. But it's manageable and will get better with time. Maybe it's Gods way of reminding me that sometimes you have to have nothing to have everything. When I was on my knees (well stuck in bed after an csection) I ran to God. I prayed, begged and pleaded for Liam to survive. I confided in him and told him that I truely didn't think I was strong enough to go on without my baby boy. It was the weakest I've ever felt in my entire life. Everything about NICU seemed like my own personal hell. The first week was difficult to say the least. I couldn't take anything good from the experience. All I saw was hell. All I did was pray. The beeping of the machines. The alarms going off telling us something was wrong. The tubes, wires, all overwhelmed my tiny little boy laying on the bed. On many occasions I was pushed out of the way so that they could help him. I didn't mind being pushed. I got out of their way as fast as I could knowing that his life was in their hands, and Gods. Day in and day out, I sat there alone listening to the beeping. When the day came for his repair surgery, I sat there alone, not knowing if he would make it through the procedure or the critical days to follow. I can't say I processed things properly. I don't even think there's a proper way to process it but I did the best I could. I'm happy and blessed to be in a much better place mentally now than I was then. I reach out to other parents who've gone through this or are going through this and help them in any way I can. It's my way of overcoming and making sure no one goes through this alone like I did. It's a rough road and you come out with scars but you can survive. 

Live Reindeer Feed With Santa and Elves

          Yesterday I volunteered in Lanie's class at the end of the day for their "Christmas Party". Her teacher had a Live feed of Santa's reindeer on the big screen for the kids. We're talking real life reindeer. Not the animated stuff. The kids loved it. Every now and again a computer generated elf would pop up on the screen and the kids would laugh until they were doubled over.
          I made sure to get the website from her so that I could check in on them and show Liam. Last night I logged in so that Liam could see. He thought it was the coolest thing ever. "Santa's reindeer! WOW! Cool!". Yes it was, but that wasn't the coolest part. Not two minutes after we started watching, a real elf came on the screen and started talking to the reindeer over the fence. You can imagine how much these two kids freaked out.
          I'd say that was the coolest thing, but it wasn't. Not 5 minutes after we started watching guess to else made an appearance? Santa!! The kids were thrilled, squiling and yelling in utter delight. We watched as Santa fed the two male reindeer then proceeded to pet them and talk to them. After he checked his mailbox. Now my internet was bogging down so we weren't the best of the feed, but it looked and sounded like Santa read a letter from someone. It was awesome.

          Just when we thought he was done, he got a chair and took a book out of the mailbox and read a Christmas story to everyone. My kids enjoyed listening to Santa's story (even if my internet was slow). After Santa read the story he told everyone to be good, and for all the kids to say their prayers before bedtime. That right there folks, that had me hooked. In this day and age, religion is being taken out of just about everything, but not this Santa. Nope. He's standing up for his beliefs and I love that my kids were able to hear Santa, someone they look up too, say that he too believes in God.
          Santa will be making another appearance tonight at 6pm, and my kids are excited. You can tune in as well and share the magic of Santa and his reindeer with your little ones http://reindeercam.com I won't be taking Liam to the mall to see Santa. I'm still weary of taking into crowded places for fear that he might catch some virus and have another setback. I was sad that I didn't feel comfortable enough to do this and that he was going to miss out. This is the first year he's really seemed interested in Santa. They must have been learning about Santa as school because Liam gets all excited when someone says Santa or he sees something with Santa on it. That made me sadder. However finding Reindeer Cam has allowed us to keep the magic of Santa and his reindeer going for the kids.
 

        I had made magic reindeer food and handed it out to the kids in Lanie's class as well as a few of her friends from other classes. It's just oatmeal and glitter but it brought the kids so much joy thinking that they can leave out a treat for Santa's reindeer. After watching this feed, they were even more excited to see who they were leaving the treat out for. I am thankful that the people behind Reindeer Cam are doing what they are doing to help share the Christmas magic that so many have lost. 

Christmas In The Heart

It is Christmas in the heart that puts Christmas in the air -W.T. Ellis

Only 11 days until Christmas.

Our tree is up.

Presents are wrapped and placed under the tree.

The house lit up at night like a gingerbread house.

The stockings are hung.

Elfie is in full swing with tricks and treats.

It's Christmas.

Today the the church kids preformed the musical play they've been working on.

It was Lanie's first play.

I'm not going to lie,

she rocked it!

She had no fear.

Only confidence.

The play went off without a hitch.

Well maybe a few hitches but no one noticed,

The congregation clapped and cheered them on.

They got a standing ovation.

I am so proud of them all.

There's only one week left before Christmas break.

Then the fun begins.

Sleeping in (yea right!)

Everyday will be pajama movie day (I'm laughing hard because yea right)

The kids will be perfectly content and well behaved for some Christmas crafts fun (where's my laughing until I cry emoji when I need it?!)

It'll be great.

Hey at least we'll try <3 p="">

You Deserve More

Dear Liam,

Lover of the rain,

Master of the smile,

Little Boy who finds joy in the world,

When others see it dark and bleak.

You deserve more than days filled with breathing treatments and meds.

You've given the world more than it will ever give you.

You brighten the world.

You see beauty and wonder.

The world should take lessons from you on how to see the world.

My precious 3 year old,

you've missed out on so much of life already.

You've never had a "normal" childhood,

but you've never complained.

I love the little boy you have become,

and always want the best for you.

I pray you never loose your love of life.

I pray your days get better with each one passing.

Crazy Morning

This morning has been crazy. 

*Justin took Lanie to school for me.

*I got Liam ready for school but couldn't find his jacket anywhere. I've been looking for it for a week now. It was the one from last year and in pretty sure I did not get rid of it. So he went to school in a sweatshirt and beanie 😔

*I drove across town to FHCN after I dropped off Liam. I was standing in line to check in for my X-ray when my phone rang. It was Liam's school. 

*I had to leave FHCN before I could get my X-ray and drive back across town to pick Liam up. His gtube was bothering him and he kept bending over, holding his tummy saying "owie owie". 

*Turns out his tube had leaked because I had given him a bolus before school because I had to turn off his feed in the middle of the night. And the wetness was causing irritation. 

*My phone rang again as I was pulling into Liam's school. Your looking at WG new PTA Secretary. 

*Walked into Liam's class and he was painting a pine cone. We waited till he was done before leaving. He told me his tummy had owies and he wanted to go bye bye. 

*I had to take Liam with me to go look for a coat for him. Rescued Treasures had nothing so we went to Twice Upon A Time. Scored a new looking, thick reversible jacket for only $7 w/ tax. 

*I then dragged Liam back to FHCN with me so I could get my X-ray done. 

*luckily I got called back almost immediately. Liam had to sit outside the room with a staff member while they took like 6 different X-rays of my neck in various poses. (I bet it would have been hilarious to see me standing there with my jaw open as wide as possible for an X-ray 😮😂) Liam did very well with the staff. He sat in the chair quietly and waited. They have him two Thomas the train stickers. 

*after we came home. We put his new stickers on some paper and hung it on his wall. He was thrilled lol. Now he's watching Thomas the train and I need to clean his gtube site again and clean the house because this afternoon will be even crazier with a birthday party and church.  

Finding Strength In Faith

Today isn't one of my best days. Unfortunately it seems like I'm doing worse with each passing day. It's ok though. I survived last years horrible flare so I'm sure I'll survive this too. It got to where I couldn't hardly walk last year so at least this year I'm still walking lol. The way I see it, I can either wallow in my own self pity and make the situation worse or I can rise above it and try to overcome it. 

No I'm not happy about being in constant pain. I'm not happy that I'm loosing control of my hands. I'm not happy I have muscle spasm, headaches and can hardly stay awake. But this is life. Life isn't perfect and neither am I. In our imperfections we find strength and beauty, a will to go one when others would have quite. There's no quitting. That word doesn't exsist in my vocabulary. 

I spend every day praying and wishing I would feel better so I can be a better mom with my kids. While most Christmas lists are full of material things, mines filled with things money can't buy. 

1) I want to be healthy and pain free.

2) I want Liam to continue to progress with his health. I want him hospital free and eventually tube free and thriving. I want him to be happy. 

3) I want happiness and strength for Lanie. I want her to stay healthy and know I love her always. 

4) I want Justin to know that even at our worst, I always and will always love him. I want his anxiety to go away because it's holding him back. 

I should rest more and take it easy when my body says so. Instead I'm pushing myself just so I can be there for my kids. So web can enjoy simple things like making crafts and playing with cars and watching movies. Lanie notices I don't have the energy I used too. I live off caffeine because I am always exhausted no matter how much sleep I get. But we will get through this because thats what we do, we survive. 

I have faith in God and that he has a plan. I can't loose faith, I can't let whatever this is win. I wake up each morning and see the smiling faces of my kids and know that no matter how painful, this day will be good. 

A Future Unknown

          I can't deny that I'm scared. I'm the kind of person who needs to know what the future holds. What to expect so I can prepare for it. My future still stands on a balance beam. My future is unknown. The unknown scares the utter baloogas out of me. We know I have fibromyalgia. There's no cure, just a lifetime of constant pain, and flare ups that have me stuck in bed. But there's more.

          Yesterday I wen't to the doctor. I went expecting a med change. There's a back story to this:

          I went to the doctor a few weeks ago after I had strep throat. I didn't seem like I was getting any better. When I went he discovered that I had a sinus infection as well. I was given Zyrtec for my allergies and Flonase for my nasal symptoms. I had explained to him that when I was on Prednisone (oral steriod) for three days that I had no pain (with the exception of my  throat). He said that if the Flonase helped my pain to go back and see him and we can add an oral steriod to my meds.

          Those that know me really well know that I hate taking meds. Even your basic tylenol or vitamin. I know that I didn't like taking them before Liam came along, but after his birth and all the meds he's had to be on that it intensified my dislike for meds. I've been hating to have to take the meds for my fibromyalgia. The last thing I wanted to do was add another med into the mix. But I'm desperate for relief. 

          So I went into my appointment just expecting him to add an oral steroid to my med mix. What really happened was far from expected. I told him about my hands. How they've been hurting really bad and how I'm loosing strength and drop things all the time. I explained how once again my feet are getting worse. I let him know that my memory is getting worse. I can be talking and all of a sudden I'll stop. I'll either forget what I was saying or I'll not even remember I was talking. It's very frustrating for my family. I can walk into a room and forget what I was doing or going to do. I forget how I got from point a to point b. 

          My doctor asked about headaches. I was a bit annoyed because we had gone over this in the past. I have chronic constant headaches. They get worse to a migraine, then lighten up to livable but I'm never headache free. We talked about my eye sight and how it's getting blurrier. They did an eye exam and I have 20/30 vision. Not bad at all. I just have to concentrate really hard to make out the letters. I explained how my sensitivity to light has gotten worse. How the light hurts my eyes and causes pain as well as rashes and makes me sick to my stomach. I explained that the rashes I was getting just on my face are now getting worse. Not only to I break out in one more often (several times a day) but that its spreading from just my face/ears, to now my chest as well. 

          After talking he decided it was best to go consult another doctor. He felt we were dealing with more than one medical issue. After consulting the other doctor he came back in the room. He ordered a bunch of blood work and test as well as referals to nurology and rhuematology. He ordered blood work to test vit D, B1, B12, kidney function, infection, cancer and again Lupus. The Lupus test is apparently different from the last two they ran. He ordered an MRI of my neck as well as a CT of my brain. He wants rhuematology to see me because he really feels like I have Lupus. He wants nurology to see me because he feels that I have something wrong in my brain.

          What it all boils down to is that both my doctor and the one he consulted feels like I have two more medical issues besides fibromyalgia. They feel I have Lupus as well as a brain tumor. He explained that some symptoms are screaming Lupus (rash, whole body swelling and pain and sensitivity to light and more) and other scream brain tumor (numbness, tingling, loss of strength, constant headaches that even the "miracle" migraine meds don't help, eye sight, memory). He said that it's really the only things that make sense. 

          After dropping this atomic bomb on me, he said that adding a new med to the mix would not be smart. He feels we need to at least get the blood work back before doing anything. I was devastated. Not only does Lupus keep coming up but now a brain tumor! And cancer?? So to deny being scared would be a waste of time because I am very much scared. I have a family to think about. Two small children that need me to be healthy and at  my best to love them and care for them. I can't be down. I just can't. It breaks my heart to even think about this.

          I keep getting asked what I want for Christmas. There are only a few things on my list and it's nothing money can buy:

          *For Liam to be healthy, strong and happy.

          *For Lanie to stay healthy, stay happy and grow up to be a strong, smart, young woman.

          *For Justin to know how much I love him, and for his to be rid of his anxiety issues that are holding him back from being the best he can be.

          *For me to be healthy and pain free.

          Money can't buy happiness. Money can't buy back time lost with your loved ones. I can only sit here and wait, and pray that the best outcome possible happens. That they find out whats wrong with me and fix it. And pray that I have many many many more years with my family. I don't know if it's the increase of my ampitripaline the doc did or not but I feel calm and resolved. Whatever happens is going to happen no matter how hard I fight it. That's why I'm praying. God has given us miracle with Liam's health and I have faith he will do the same for me.

          If you could find it in your heart, please keep us in your prayers. 

-Aubin

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.