New Beginnings…

The first day of school always brings so much excitement, anxiety, new friends and best of all new beginnings.

My kiddos started school today. Andon started the second grade and Noelle started kindergarten.

When Andon started kindergarten, I cried before I even woke him up on the first day. Held my tears while I dressed him, fed him and made sure he brushed his teeth. Held it together until the bus pulled away….then cried my eyes out. I quickly realized that my babies were growing up and didn’t need me as much. I followed the school bus to school, stalked….uh….I mean watched as he walked into school. Then, I called to make sure he made it into his classroom. I worried about what kind of day he was having and prepared his favorite snack for when he finally came home.

This morning with Noelle was different. I was so proud of her. I didn’t cry at all getting her ready, feeding her breakfast, brushing teeth together and doing her hair. She was so excited and I was so excited for her. We put Andon on the bus and then I took her to school (she can’t ride a bus, they wanted to transport her in an SUV….so I just decided to take her myself.) As I was driving to school a song by Switchfoot called “This is Home” came on. This is the song that Emily (one of Noelle’s NICU nurses) gave us on a CD when we left the NICU. Enter tears….BIG ONES! I know how blessed I am. But on that ride to school….I thought about all those NICU parents who didn’t get to take home their kiddos…let alone take them to the first day of kindergarten. I remembered the moments that I was unsure if Noelle would leave the NICU or start kindergarten. Those memories just came flooding back and once again realized how incredibly blessed we are!

I get a lot of reminders about how blessed we are…but today was a big one! That little miracle girl has come a long way from her 1 lb 11oz preemie! My biggest fear today was that the kids would look at her differently and not want to be her friend. Seems like the opposite happened!

Noelle has AMAZING teachers and therapists! Her teacher said that some of the kids were even correcting other kids about stepping on her tubing!! (Enter tears now!) One of the little girls even gave her a “Nice to meet you” card! I teared up this evening again as she was making a card for that kid! She did it on her own without even telling me what she was doing. It says, “I love you, Kaylee!”

These kids of mine have HUGE hearts!! Sometimes, I hate the fact that summer is over and I have to share them with school (but other times, I’m so thankful that summer is over!) Watching them blossom over a school year and make friends is priceless! I am really looking forward to a great year…. This year is going to be one of the best, I feel it!!

Cheers for new beginnings!

Xoxo,

Stacie 🙂

Things that should be easy…

You would think it would be easy for me to give Ross his first treatment shot today. I’ve watched needles go in and out of him and Noelle what feels like thousands of times! To give a shot… Knowing the side effects that the shot may cause… was sad for me today!

The shots and pills are in… So for now, we wait, we pray and we hope!!

Ross is in a great mood and even decided to do a video blog about his journey through treatment! This is crazy because he is usually such an introvert! I think he has kept this secret for so long (because even doctors have been quick to judge how he got the Hep C… Until they hear the story)… I think it feels good to let it out!!! I’m proud of him! Check it out:

Our marriage hasn’t been roses and chocolates everyday! We have had to work to keep our relationship and marriage strong. It hasn’t been easy. Tonight, it’s easy! He has always worked so hard to provide for us and love us unconditionally. I’m proud of him for taking this with such ease so far……

So, again… We wait, we pray, we hope… Thanks for joining us!

Xoxo,

Stacie 🙂

What’s The Big Deal Anyway….

. This post may actually tick some people off. It may be totally relateable to others. I am absolutely perplexed why people think it’s their business to ask about my kid when we are out in public…..

Maybe its time to start turning the conversation around and asking them about personal things….

Let me set this up. Whenever we go out in public with Noelle and Frank (Frank the tank is the name of her oxygen tank)…people inevitably stare. They point. They whisper. Any sometimes, they come up to us. Sometimes this is frightening, but mostly it is just annoying.

We were in Target the other day shopping. Practically everyone shops at Target at one time or another and we happen to LOVE Target. I was loading Noelle and Frank into the back of the shopping cart when this woman came up behind me and put her arms on my shoulder and I quickly turned around (rule #1….don’t touch me if you don’t know me!). She layed her hand on my head (I can’t make this stuff up) and started to pray for Noelle and I. I was kind of shocked and to be honest, pretty mad that this lady was touching my head that I moved away from her. I’m all about being prayed for….but God only knows if this woman washed her hands last after using the restroom! She then asked me every question in the book about Noelle. “Why does she wear that oxygen? How long has she worn it? How long will she have to wear it?” Etc….this went on for about 5 minutes before I told the lady I had to go shopping!

I try to be as nice as possible when people ask these questions, because honestly it happens a lot. Quite frankly, we like the prayers (as long as they aren’t touching us unwanted) ….but the 20 questions game has got to go. As we walked away, the lady said loudly to her friend, “Oh, I feel so sorry for that child!” This infuriated me. I turned around and glared at that lady. Then, my mother’s voice went off in my head, “If you can’t say something nice….don’t say anything at all.” The last thing my kid needs is pity or anyone feeling sorry for her. To Noelle, this is her life. She knows no different. Does she realize she’s different? …Sure! Does she care? …Heck NO!

Another time, in Walmart (the first and last time I took her there) another older woman came up as I was turning to grab an onion. As I turned around, I saw this lady kissing Noelle on the forehead (Rule #2….dont touch my kids if you dont know them. Kissing them is grounds for me punching you!!)! I started to yell at this lady to get off my kid! I took a deep breath and explained that her immune system is compromised because of her lung disease. I told her we dont really appreciate strangers touching her as I dont think any parent would appreciate that even with a normal kid. Well, that started the line of questions… (Shoot me!)

One more example and then I’ll be done ranting. Another time while in a store (I believe it was Target…yet again!), this woman came up to us asking tons of questions about Noelle. Andon was with me as well and the woman didn’t as much as look at him. Nope, she downright ignored him. She talked directly to Noelle about how cute she was and how beautiful her smile was. Didn’t say a word to Andon. (Rule #3- If that special needs kid has a brother or a sister, pay attention to them too! They inevitably have had to deal with a tough transition as well. They deserve a lot more attention than they get!).

So, this leads to my point. Not everyone looks the same. If you saw an disfigured person at a store…would you go up to them to ask them what happened? NO! Most people would smile and nod in passing. I saw a man with a prosthetic leg in a store one time. Did I go up to him and probe him to find out if it was a war wound or a farming accident….NO! There are tons of elderly people with oxygen and no one standing around trying to figure out whats wrong with them…

The point is….we came to a store to shop! Or, we came to a restaurant to eat! Not really to meet new friends or have people feel sorry or pity us. So, whats the best thing to do? If you see a person in a store with a child with oxygen, in a wheelchair or a child that is just different (for example, many of the kids on the spectrum look completely normal. You can’t see their disability. Yet, when they freak out in a store due to over-stimulation or something setting them off….people judge them for bad parenting)….the best thing to do is just let them shop. If you feel so inclined, say a (silent) prayer for that family.  If you really feel the need to say something, applaud the mom or dad and just tell them they’re doing a great job.  If they’ve ever heard that they are doing a good job before, most likely….they don’t believe it. Special needs parents spend enough time going over medical history at the bazillion (yes, bazillion is a number…ask our bazillion doctors!) doctors appointments we go to each year. The last thing we want to do is explain it to a stranger. Raising a special needs child is not easy. It has its difficulties…but certainly has its blessings.

Time to get off my soapbox!

xoxo,

Stacie 🙂

Teacher Workdays are super!

I’m pretty sure that Teacher Workdays were designed to help teachers get the grades done and get things accomplished in their classrooms. I’m pretty sure they were also designed to drive parents nuts! Don’t get me wrong…I love having my kiddos at home. I love sleeping in and staying in my PJ’s. It’s an awesome day…until my kids start complaining! “MOM!!!!!!! I’m STARVING!” or hearing an alarming scream and then… “MOMMY, Noelle hit me!” or another personal fav, “MOM….Andon took the heads off my barbies!”

I know I can’t be the only one….

So, as a super mom (which I totally am! Ha Ha!!) its our job to occupy these kiddos so they don’t drive each other or me crazy!

Of course, I attempted to let them play Wii so I could sleep in. That didn’t work for very long. The arguing over who was playing Mario and not picking Peach the Princess for Noelle quickly started the screaming.

It doesn’t matter how many times I try to instill that we don’t yell and scream at each other….it goes right out the window everyday! They seem to have good hearing…but comprehending seems to be the issue. They must get this from their dad….

Hello Netflix for Kids! Mommy needed some coffee and luckily Netflix for Kids came to my rescue. But I have this thing about too much TV and visually watching my kids brains get sucked out of their heads and straight into the TV. Blah, blah, blah….

Cue homemade playdough! This stuff is a win/win! The kids love helping me make it, stirring, watching it cook and then playing! This recipe can keep my kids busy for days. We even have a basket of cookie cutters, rollers and other fun playdough-ey toys.

Here is the recipe I use. I have no idea where I got this recipe from, but it is magical!

1 cup of flour

2 Tbsp Cream of Tartar

1/2 cup Salt

1-2 Tbsp Oil

1 Cup of Water

Food Coloring

Mix Flour, Cream of Tartar and salt. Mix food coloring into the cup of water until desired color. Mix water into flour mixture then add oil. Cook in a nonstick saucepan until thick and rolled into a ball (seems odd, but you’ll see). Knead out on a floured countertop and slap the warm playdough on the table to play with!

I find that this recipe lasts so much longer than the store bought kind. Make sure to bag it up after play to avoid drying out.

After lunch, we started to get bored again. Legos weren’t quite cutting it anymore. Cue yummy cupcake making!! I found this recipe last fall on Skinny Taste and fell in love with it. It sounds disgusting, but they are honestly super moist and yummy! I can think of better ways to tweak these to make them a bit healthier…but lets face it…my kids butt cracks typically hang out because their butts are so small. So, they can use a little sugar every once and a while! They seriously eat these up!! It’s probably the only way to get pumpkin in them. I don’t use canned pumpkin. Each fall, I boil and puree some of our fall pumpkins to freeze in 1 cup portions….just so we can enjoy these cupcakes year round!

http://www.skinnytaste.com/2011/10/low-fat-chocolate-mummy-cupcakes.html

I’m slightly bitter that there is no snow to play in….but when has a weather man ever been right?? Good thing, I always have a supply of water colors. Best paint ever invented! The kids were totally let down to realize that sledding wasn’t going to happen on muddy hills….so out came the water colors!!

As for the rest of our day, I booked our Disney World trip, ordered a boat (or van) full of oxygen for the trip, booked the minivan (Pretty sure I missed my calling as a special needs travel agent…..)and snuggled during a little Finding Nemo. Now, it’s time to figure out what to do tomorrow… Hope everyone had a great day!!

xoxo,

Stacie 🙂

I did it…..

I finally jumped in and started a blog! I’m really excited about it. I remember back in the days after Noelle was born, it was absolutely therapeutic to write out everything I felt on her carepage! Here is a link to her Care Page from way back in the day if you’re interested:

http://www.carepages.com/carepages/Mikels

I had ended the care page and started a blog about our family but never kept up with it. Not to mention, we always had 1000 things going on, so by the time I updated it…I didn’t know where to start. I’m excited about including a lot of things into this blog!! I’m a special needs momma on a mission, weight loss success story, practically a nurse (of course no degree….but seriously, Noelle could be my diploma!), Facebook and Pinterest lover who is always looking for ways to organize better and create more time in my life. So, I think this blog will be a culmination of all of that! 🙂

So, if you have any tips on blogging….please let me know with a comment! I’m definitely inexperienced…but willing to learn!

Today, is Noelle’s annual IEP meeting. It is so hard to believe that we will be planning for KINDERGARTEN! I’m not sure where the time has gone…but I want it back. Any parent would probably say that time flies with your children. But it feels like time has flown especially fast with Noelle’s fast paced life.

I remember when she was 6 days old and sitting by her isolette just praying to get a glimpse of her 5th birthday in a dream or something. She was getting ready to have heart surgery and wasn’t even 2 pounds yet! I was terrified and wished that I could trade places with her. It’s hard enough having to watch a kid get ready for heart surgery….but watching your 1lb 11oz kid get ready for heart surgery was devastating. Would the doctor operate with toothpicks? How could she possibly survive this? I just wanted to know that she would make it, I just wanted to know that her 5th birthday would be around the corner somewhere, I wanted to make sure she didn’t feel alone during surgery. I prayed and prayed and prayed … then was reminded. God was going to be with my baby girl during surgery. She wouldn’t be alone. I left her right before surgery, wiped my tears and knew it would be okay.

And it was…

Here we are about 6 months from her 5th birthday! I know what her birthday will look like. I wish I could go back in time and give myself a hug that day and say, “Buck up Stacie…this is just the beginning! Stay strong!”

Have a great day! Thanks for checking out my new blog!

 

xoxo,

 

Stacie 🙂