Old Times Revisited…

Ross and I just spent the last 45 minutes looking through old photos of the past 5 years. Most people look back on old photos and reminisce about how wonderful the times have been, how precious the memories are and how wonderful it is to look back!

Honestly, ours are painful. I cried… A lot! I look into all of our eyes in the pictures and see pain. Andon feeling so left out (yet, still smiling) and ignored. Ross having just blank stares. Noelle having pictures of barely surviving, hooked up to life support and in the hospital smiling. Then there’s me!

For the first probably 2 1/2 years after Noelle was born… My life was absolute chaos! I felt so GUILTY! Guilty that I couldn’t keep my baby inside and mad at my body for failing me and my daughter! Angry for not seeing the signs sooner that she was on her way! Mad that there was no turning back time to keep her in longer! Guilty describes me best. I felt like my body failed and was responsible for turning our lives upside down. Not to mention, I often felt guilty for waving my white flag and admitting that sometimes, it was easier to admit her into the hospital rather than be so sleep deprived that I screw up her meds (yup… That happened!).

Many of those pictures were from our first few weeks at home. Noelle spent 222 days in the NICU. Came home for 3 1/2 weeks and then went back into the hospital until a few days before her first birthday. I took a lot of pictures. The doctors told me that her getting sick would potentially be fatal… I felt like pictures had to be taken, just in case!

Because of this, I turned into the germs worst nightmare! I wouldn’t let anyone in our home without washing hands. I made Ross change his clothes after work before picking up Noelle. Andon and I stayed home with the exception of Noelle’s doctors appointments. I even fired our first home nurse because she was a smoker and just dirty and gross!

I had no friends! I didn’t let them in much, especially after having to quit my job! And realistically, who would want to be friends with me? I was a crazy fool.

Noelle needed nebs every 2-4 hours round the clock. Ross had to sleep at night so he could work and function during the day. Which meant I slept about 1 1/2 hours at a time, every few hours only at night. I had to potty train and somewhat pay attention to Andon during the day. I was a sleep deprived zombie! Most of the time, Noelle also needed meds round the clock (She came home on 16 medications)!

There was one day after staying home for a few weeks by myself… Andon was acting out (heck, I would have been screaming for attention if I were him) and Noelle was screaming and desatting like she did everyday! I was overwhelmed, sleep deprived and had a to do list of too many things. We were in the process of trying to find ways to save our home and avoiding bankruptcy. I lost it… Andon was in his room screaming, Noelle was downstairs crying and beeping and I locked myself in my bedroom bathroom and cried… For what felt like hours. Crying didn’t help me face reality. I pulled myself together, said a prayer and found the strength to carry on with the day. I always tried to put on a front when people called or came by… But I was miserable.

Honestly, I didn’t realize how miserable I was until I started to look back at pictures. It does give me a sense of sadness still today. How our lives were turned upside down in an instant…

Thankfully, the guilt and anger are gone. Replaced by a little bit of sadness. Our little family has been through a lot and much of our experiences have changed us. I’d like to think changed for the better. I’m a far more patient person now than I ever pretended to be before. Andon doesn’t seem to be too phased and can’t remember “BN… Before Noelle!” Ross still gives me that blank state occasionally when I talk too much about the medical stuff. Me? I’m a far better understander of people, life, death, hard times and how everyone (at one point or another) just needs a break!

Just putting it out there… There are a LOT of feelings that come with having a preemie and a special needs kiddo. It has taken me almost 5 years to admit this! Typically, when we say we are fine… We are not! Usually, when we have a super upbeat attitude about something medical or developmental… It’s because (partly) we are still convincing ourselves! We are far from super human… But would rather have a sleepless night researching a cure or cause than sleep not knowing what’s going on. I’ve heard a special needs momma does better research than the FBI… I’m almost positive this is accurate!

I guess my point is that, yes! I smiled and put on a happy face while my world crumbled around me. But really… What choice did I have? Pretty sure if I had acted the way I felt back then… I would have been put in the looney bin! Realistically, I didn’t (and still don’t) have a choice! This is our life! Sometimes it’s still miserable! Sometimes it’s absolutely awesome! Thats why its called LIFE! Just like any normal family… We have our ups and downs.

I had a doctor tell me in the NICU that Noelle’s life would be a bit of a roller coaster for a while. I figured that. However, I failed to realize that our whole family would be on this “ride.” Obviously, our “ride” isn’t over yet. I’m not sure what (if anything) I would change at this point. This is our life… It’s normal to us now! Looking back is hard… Looking forward is sometimes hard!

One day at a time is perfection!

Xoxo,

Stacie 🙂

Disney Bound!

In about one week, Ross and I are picking up and taking the kids to Disney World. I’m pretty excited (and now pretty poor!) and literally can’t stop planning! I want to make sure this experience is once and a lifetime for my family! My mom bought the kids new Ear Hats (well, Noelle wanted to pink sparkly Minnie Ears headband…but whatever) and autograph books for all the character spots!

We are renting a mini van (in order to pack all of Noelle’s equipment with us) to drive from Virginia to Flordia and getting to see some friends along the way!! Believe me when I say…there won’t be room for anything extra in our van.

So, I’m reaching out to those who have been to Disney World with kids (ours are 4 & 6) before! What are some of the activities that you would place at the top of your to do Disney list? What are some things you wished you had skipped?

Noelle will be in her wheelchair, so I’m not too worried about lines. She would never make it from the parking lot to the gate…let alone around the park! We are planning to go to the parks in the morning, come back mid afternoon for a nap (Noelle will never make it for a full day…after 5 hours at school she takes a 2-3 hour nap as it is) and then be back at the park for dinner and evening activities.

Also, we purchased a dining package. What places to you recommend? I need recommendations for reservation and quick dine places!

I recently downloaded the My Disney Experience App on my iPhone. I also downloaded the Disney Maps app. Are there any other apps to download before we go?

Thanks for the advice ahead of time! We are super excited!!!

Somedays….we do the best we can….

Let’s face it….sometimes….I simply suck as a mom! There are moments (even days) that I feel like I’m absolutely super mom. Today does not happen to be one of those days! Today was one of those days I ran around like a chicken with my head cut off! This is the brutal honesty about being a parent and parenting…

Anyone ever thought that they were a much better mom, BEFORE they had kids? I had all these rules and things I would never do with my kids. For instance, I said my kids would hardly ever watch TV. TV rots kids brains and I was determined not to use it as a babysitter. I also was NEVER going to give my kids fast food. I wasn’t going to let them play video games for more than 15 minutes per day. I was going to have them potty trained by the age of 2. They were going to be dressed and looking cute everyday with hair in place and teeth brushed.

Currently, Andon is watching a movie on the iPad while Noelle plays video games (lets just say its been longer than a half hour) and I’m so thankful to have some peace and quiet. Oh, and we stopped and got Happy Meals on the way home today….yup….after they already had lunches at school. What can I say…maybe its a growth spurt, right?! And I can’t forget that I’m pretty sure Andon went to school this morning without brushing his teeth….and we were running so late that he ate breakfast in the car!

I pride myself on giving my kiddos lots of fresh, wholesome and healthy meals…and then bomb occasionally! I know other parents can relate…but this really is not how its suppose to be. I imagined a perfect mom in myself…doing everything right. Yet, as soon as I get stressed or have too much to do…I immediately go to TV, Video games or movies.

I wish things were like they were when I grew up. From the moment I got our of school, we ran outside to play in the neighborhood and my mom wouldn’t see us until dinner. Alas, the world has changed. Don’t I wish I could just ship the kids outside and not worry! Maybe then…their little brains wouldn’t rot with TV!

Oh well! Somedays we just do the best we can! Today will have to be good enough… 🙂 Let’s face it….I’m not the only one, right?!

 

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 🙂