My NICU Miracles

Did you know that September is NICU Awareness Month?

That’s okay if you didn’t. It’s one of those things that if you’ve never had a preemie or baby that had to spend time in the NICU then you wouldn’t know. And that’s okay. But I am one of those people that knows about NICU Awareness Month because I have two NICU miracles.

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My first experience with the NICU came when I had Grant 8 and a half years ago. He came 4 weeks early at 36 weeks. He weighed 5lbs 13oz and spent 18 days in the NICU. Things were a tad different in our situation with Grant because as I have talked about before with all the complications I had with my pregnancy with him and knowing before he was even born that he would most likely have Cerebral Palsy…I also knew that he would be born early I just didn’t know how early. Him having to spend time in the NICU was also pretty much a given. It was all dependent on when he would need his last transfusion and whether it was better to transfuse or go ahead and deliver. At 36 weeks the decision was made to deliver. So I headed in for a C-section. I heard the sweetest little cry as they flashed him over the curtain then quickly whisked him away. The next 18 days he spent trying to overcome swallowing issues which was the first obstacle of his Cerebral Palsy.

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My second NICU experience was almost 3 years ago when my daughter decided to “grace” us with her presence 10 weeks and 1 day early!! After a week of being in the process of active labor she came within a couple of hours. I was one push away from having to push her out naturally as opposed to a c-section. I didn’t even get to see her beautiful face before they whisked her away. She surprised us at 29 weeks 6 days weighing 3lbs 4 oz. She was a tiny little bitty ball of fire and strength from day one. She was my little Rockstar! I always said that she was too excited to meet her brothers. She spent a very long 46 days in the NICU which included a NICU transfer to a different hospital. She did amazing and spent most of her time being a feeder and grower. Her biggest struggle was learning to drink from a bottle. Once she got that she was good to go!

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To this day the hardest couple of days of my life was when I had to walk out of that hospital for the first time leaving behind a huge piece of my heart to be taken care of by complete strangers. I remember the day we left with Grant I was waiting for my husband to pull the car up. There I sat with my bags and flowers and balloons but no baby. I sat there and watched a couple get off the elevator all smiles with their baby in the car seat. They were beaming with happiness as tears rolled down my face. It seemed so unfair.

Every day after that when I would go visit my baby in the hospital broke my heart just as much. It is the strangest feeling for it to be your child but having to follow the rules of someone else when it came to caring for them. And it’s just so unnatural to sit in a room where your walls and privacy are curtains, hearing beeping from not only your baby’s machines but all the other baby’s also and spend quality time with your brand new baby. Your bonding time was spent being interrupted by asking if you were okay, if you needed anything, if you were going to pump. Some days I just wanted to scream “I JUST WANT YOU TO LEAVE ME ALONE!!!”

And then it was time to leave again. I remember with Gracie everyday as I laid her back in her isolette and gave her a kiss and promised her I would see her tomorrow as the tears would stream down my face. Every day for 46 days I left the hospital in tears. Now don’t get me wrong…even with the pain of having to walk away everyday I knew that they were both in the best care they could possibly be in. I knew that the amazing NICU nurses and doctors were taking care of my babies better than I could’ve at the time. They knew things that even as a seasoned mom I didn’t know enough to help. But that didn’t hurt the pain!

Today they are a happy and healthy 8 year old and 2 year old (I refuse to say almost three because I still get 20 more days of her being two!) You would never know by looking at these two happy faces that their journey’s started out so rough.

Moral of the Story: I give a huge high five to any NICU moms and dads (and even NICU siblings because their lives are also turned upside down on this journey) out there. Whether it’s been decades since your NICU miracle or just yesterday. The journey is a hard one no matter how long or short and it’s a journey that a parent never forgets!

(If you are a NICU parent let me know in the comments!! I absolutely love hearing stories of NICU babies!!)

Have a blessed day!

What Are You Doing?

That is the question I have been asked a lot lately. Well that and “Do you have any tips?”

Let me tell you a bit about the journey I’ve been on before I dive into answering those questions!

Almost three months ago I started a journey that was all about me. No I didn’t go to some exotic beach (although that sounds amazing) instead I decided to find myself again. Sound a little crazy? Or maybe a little too familiar?

So it’s no secret I’m a mom. Not just a mom but a mom to three amazing kiddos. You know how doctors get to talk about the letters after their name? Well I get to add a few awesome words to the beginning of mine and that is special needs mom. That makes life that much more incredible but also some days that much more difficult.

For the last almost 10 years (that can’t be right, can it? 2008…2018…yep! wow! okay, focus!) I have dedicated my entire being to the three little people that call me Mom. And don’t get me wrong it’s been truly amazing…I wouldn’t have it any other way. But in the midst of all that I lost sight of who I was…and I gained about 40lbs!

I know that doesn’t seem like much but here is where the special needs mom part comes in to play. It was getting extremely difficult for me to lift, hold and carry my 30lb son around. I was constantly out of breath. Constantly exhausted. Constantly in a fog. And he’s only going to get bigger so it’s only going to get even more difficult! Finally, on June 11th of this year I had said enough. I had my moment of “I just can’t do this anymore. I can’t live like this.” And I started my journey.

Now here I sit 20lbs lighter!!! Yes I said 20lbs lighter and it feels amazing. When I decided to start working on a healthier me I was the biggest I had ever been at 145.6lbs. Again, I know that’s not that big but when you are 5’3″ and up until about three to four years ago were never that big then it is a lot! Dropping 20lbs has completely changed my life. But it’s not the weight that makes me happy (although seeing 125 again put a huge smile on my face). Instead it’s the fact that I have more energy than I have I think since having my oldest. I am hardly ever out of breath anymore and the fog has lifted!! I can carry Grant for much, much longer periods of time without being out of breath. I can keep up with my crazy energetic two year old. I can get stuff done around the house even when I do take a sec to sit on the couch. I don’t sink into the couch and let it consume me because I just don’t have it in me to get back up. I feel like I have my life back.

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So enough with all that…how did I do it? It wasn’t a magic pill. No drink that I have to drink X amount of times a day (well except lots of water). It’s not a monthly subscription or auto-ship that in three to four months time I will not want to do it anymore and see no results but forget to cancel and get charged again (you know exactly what I’m talking about!).

It’s a lifestyle change…I’m following the Ketogenetic Diet.

Ugh…don’t you hate that word…diet? I know I do. It’s not a diet but like I said it’s a lifestyle change. It’s a low carb, high fat and moderate protein meal plan (does that sound better?).

This article from thrivestrive.com  perfectly explains what it is and why it works in terms that are easy to understand.

I have been posting my results throughout the last two and a half months on Facebook and Instagram. I have so many people asking me what I’m doing or if I have any tips so I decided to add an exciting piece to 8 Feet and a Set of Wheels.

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Every Wednesday I will be posting a “What’s For Dinner Wednesday” blog post. There I will share a delicious recipe with all of you. One that’s tried and true and of course tested and passed (some even from the pickiest 9 year old I know).

This has truly been the easiest lifestyle change I’ve ever made. I considered myself a very picky eater…veggies? Absolutely not!! But that has all changed for me! I get excited finding new foods and recipes to try!! And now I want to share all of that with you!

I will also be posting little tidbits of info over on our Facebook page. So make sure you “like” and follow to keep up with fun info!

Don’t worry…I’m not turning this into an all diet, all lifestyle change. Or a do what I do and you too can look like me blog!! Nope! I’m still going to be posting about life and the craziness around us. This is just something I am passionate about and want to share with all of you!

So stay tuned next week for our very first “What’s For Dinner Wednesday” post!!

Have a blessed day!

Pick Your Battles…They Say

I’ve heard that phrase all my life. Even as a child I remember hearing parents say “You have to pick your battles” referring to situations with children.

I have to say that I’m on my third kid and I have finally…truly learned what that means.

Matthew was such a laid back kiddo! He very rarely threw fits in the store. I remember one time in Dollar General when he wasn’t even two he threw a fit over a ball and I put the ball down and we left without it. I don’t remember any other time. Even at home he was so easy. Now there were some times at home that it wasn’t worth the fight so I gave in. But again that was rare.

Grant has also been pretty laid back. He’s pretty easy to get along with and he pretty much goes with the flow…for the most part. There haven’t been many times that I’ve felt like I had to compromise my decision to make him happy.

Then enter Grace! Oh mylanta!! This girl has been a constant series of picking and choosing battles, however, it’s always been pretty easy to compromise with her to end up getting my way. Until this last week…I feel like she’s won the upper hand in most the battles.

I’m not sure if it’s the crazy full moon, blood moon, lunar eclipse or her coming up on her terrifying threes but this week has been nothing but having to choose my battles and I haven’t been very successful!

But again…pick and choose. Like today for instance. I had to go to Hobby Lobby and she wanted to go. She was still in her jammies so I told her to go pick what shirt she wanted to wear. What did she pick? Her Belle princess dress up dress! I asked if she was sure and got a giddy “Yes!!” So that’s what she wore to the store today. Could I have told her no? Absolutely!! But why start a battle that wasn’t worth the fight. If she wants to look like a princess as she shops with me then her wish is my command.

Maybe it’s an age thing. I’m older now and those types of things don’t matter. Maybe it’s a third child thing…I just don’t have the energy to fight that battle. Or maybe it’s the fact that she’s my last baby and I know someday soon there will come a time when she no longer wants to wear a princess dress to go shopping and I will think back to this day with tears in my eyes and smile…remembering when that sweet little two-year old thought she was something pretty special wearing her princess dress to the store.

Moral of the story: pick your battles…absolutely! But remember to also make memories as you go!

Have a blessed day!

Tears in Walmart

Every once in awhile something happens in your life…a moment, an interaction…that makes you smile (an maybe bring tears to your eyes as you are walking through Walmart).

I was going to get on here and post a blog about how unfair life can be for a special needs child. I was all ready to talk about how Matthew is at the lake for a few days with my parents but Grant didn’t get to go. I was going to whine a little about how Grant deals with enough…but then something happened.

As we were walking through Walmart, Ryan was pushing Grant in his chair and I was following pushing Grace in the cart. Going down a main aisle Ryan cut across and I waited for a younger guy to pass first then I followed. We were standing at the phone chargers and this same young guy came up to us. Thinking we were in his way, Ryan and I both kind of parted the way. That’s when he bent down to Grant.

This is where the watery eyes started.

He bent down to Grant and talked to him. He didn’t talk to Ryan and he didn’t talk to me…he talked TO Grant. And he waited for Grant to answer him. He asked if Grant liked toys to which he got a huge smile and little nod yes. Then he asked what kind of toys. Do you like cool cars he asked Grant. Again big smile and nod as Grant looked at me like how did he know. He then looked up and asked me “Does he have Cerebral Palsy?” It always throws me when people ask that. I told him yes he does and he told us his twin brother has Cerebral Palsy. He said they are 23 years old. Then again he started talking to Grant. He handed him a $20 bill and told him to go buy him a cool car. Then he waited there for Grant to grab the money.

I’m not sure how I choked back the lump in my throat to thank him for being so kind. As he walked away and I bent down to Grant I had to wipe a tear away.

It’s those moments that make you take a step back and see the world…in that moment…as nothing but good. His kindness towards Grant and the way he spoke to Grant like a person was beyond words. There was a connection between the two of them. They understood each other and that was so amazing to witness!

Oh yes and Grant picked out an awesome car!! He was so excited to walk through the toys and search for something he wanted. His car lights up and makes noise and he can do it all by himself.

Moral of the story: Never take for granted the fact that there are still amazing people in the world. And when you get wrapped up in a moment that takes your breath away…soak it in!

Have a blessed day!

There’s No Greater Love…

…then that of a special needs sibling!

One of my greatest joys is watching my oldest and youngest with Grant. I love the look of love and adoration in their eyes as they interact. I truly believe there is no greater love.

Matthew was only 17 months old when Grant was born. He’s been there through every triumph, every mountain, every tear and every smile. He’s been there for every doctors appointment, every bad day, every great day, every small feat…He’s experienced it all with a smile on his face. He’s never once complained. He’s never once acted like Grant is a burden. He’s never once acted upset over the amount of time Grant takes from him. He is truly Grant’s biggest fan and always the first to be excited over something he has accomplished. Grant being Grant is all he’s ever known. And he is truly amazing with him and the love that Grant shows for Matthew is indescribable. I’ve said so many times that I wish Grant looked at me with half as much love and adoration that he shows when he looks at Matthew.

And Gracie…oh my she’s Grant’s little Momma! She’s always making sure he’s okay. She’s worried when he cries. She laughs when he’s silly. She loves on him when he needs it. I can always count on her sharing her food or drink with him. She had a piece of cheese the other day and I look over and she’s holding his head so gently saying “here go Gant. Take a bite. It good.” She’s always asking “where my Gant?” One day we had to drop the boys off at school and it messed Grant’s day up so he was crying. I got back in the car and she said “My Gant cry, Mom” “where my Gant go?” She loves him fiercely and I love that he always has her to look after him.

Life as a special needs sibling is not a “typical” life. You see things you shouldn’t have to see. Like, for instance, being seven years old and watching your younger brother have a seizure…and then watching it again several more times. Having to ask your mom “Can you die from a seizure? Is Grant going to die?” It’s the worry that anything could cause it to happen again. Matthew is Grant’s protector when it comes to seizures. He is always making sure he is not doing anything or exposed to anything that will cause him to have one. 

Life as a special needs sibling is being 2 years old and watching your older brother throw up so many times over and over day after day to a point that when you play doctor you act like you have to throw up but you have to have mom take you in the kitchen and hold you “like Grant” so you can throw up.

Life as a special needs sibling means not getting to do some things just because Grant can’t. Because even though it’s 2018 there are still so many places that are not handicap friendly, wheelchair accessible or good for kids with disabilities. 

Life as a special needs sibling means being told to wait “just a minute” while your mom helps your brother with something as easy as getting a drink or eating.

Life as a special needs sibling means life isn’t always fair.

But…life as a special needs sibling means that you have a kind heart! It means that you learn compassion in a way most adults will never understand. It means that you learn to put the needs of others before your own. It means that you know a love deeper than any love and so unconditional nothing can break it because your brother loves you so truly, so madly, so deeply that it makes it all worth it.

Moral of the story: Be kind to special needs siblings. They have a life unlike any other. Most days their lives are chaotic and crazy. If you get a chance to be friends with a special needs sibling, do it! They will show you kindness you’ve never seen before. Special needs siblings are the unsung heroes. The superheroes that don’t wear capes!!

Have a blessed day!

We Are Now on Facebook!

That’s right! We have a facebook page!

So now in addition to the blog posts that will continue to be posted here you can also find some great posts on our page.

Some of the posts will include fun facts, articles I find intriguing, activities for the kids and lots of other great stuff!

So if you enjoy reading all the blogs then hop on over to facebook and join our 8 Feet and a Set of Wheels page!

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We are looking forward to seeing you!

Have a blessed day!

No Straws Aren’t Good For Everyone

I’m really really torn over this! I get the reasoning behind it. Totally understand. It’s great for the environment and I’m glad to see changes being made to protect our Earth…it’s about time…

BUUUTTTT…

This is awful for Grant (along with many others with disabilities) if everywhere follows suit. You see, as you know Grant is disabled! He cannot drink from a regular cup like the majority of the population. He is working on it but he is no where near ready to take on that task. He has worked his butt off and still continues to on drinking from a plastic straw.

starbucks-cup(please refer to this article on Buzzfeed about the new Starbuck’s cups)

“So why can’t you just bring his own straws with him?”

Well here’s the thing…being a special needs parent requires a lot. I’m not talking about all the physical and mental stuff…I’m talking about all the extra baggage that has to be packed for just a simple outing like eating. So while trying to remember bibs, a fork and spoon (because he can’t eat off of plastic ones because he breaks them), wipes, and making sure we have pull-ups and a change of clothes just in case. Add to that everything we need for our two year old and that’s a lot of stuff. So what happens when I accidentally forget to pack a cup because now places don’t offer straws. Or what happens when I don’t pack the bendy straws (which by the way if I still continue to use them doesn’t that defeat the purpose?). I will tell you what happens…he doesn’t get a drink…and that is just not right!

No I know there are other alternatives to plastic straws that I could use but let me explain why they aren’t an option.

Grant cannot use stainless steel straws. When he has something hard that goes in his mouth he bites down hard. It seems like the harder the object is the harder he bites.  So I’d prefer to for him to keep his awkward looking permanent teeth that are coming in :).

But there are paper straws…those aren’t hard. You’re right…there are paper straws. But imagine this…you know when you suck and suck on a sucker and the paper stick starts coming off in your mouth? Yeah that’s what would happen if Grant used a paper straw. Instead of getting a good drink of his yummy chocolate milk he would probably gag when instead a chunk of his paper straw comes off in his mouth.

Last is the silicone straw…it’s a great fix…not hard for him to break his teeth on and not paper for him to get chunks in his mouth. The problem? He can chew them off! Yep that’s right. I don’t really want him swallowing chunks of silicone!

With plastic straws he can drink out of them really good. Like I said not perfect but he’s getting the hang of it. Usually all I have to do his hold his lips together on the straw for a sec to get him started and he goes to town. And again…if need be…yes I can pack straws to take with us…but what if I forget? Again that makes life not fair for Grant.

Moral of the story: Well I think honestly the moral of the story is that once again the special needs community is no considered and not as important as saving the earth and animals in the sea. Don’t get me wrong I love see life and the animals in it but I think my son matters more!

Have a blessed day!

I Smile Because…

Look at this picture…what do you see?

After looking for a second you will obviously notice Grace being silly and Grant cracking up.

Look a little longer and some of you might be saying “Look at the counter and sink!” Or “Look at all that junk all over the floor!” Or “Is that a TV in her kitchen?”

Yes! Look in the background. You will see chairs scattered, a printer on the floor, a misplaced Spongebob desk that needs fixed. You will see a broken TV that I have been needing to get rid of for a couple months and yes that’s a plate of food that looked like a good place for Grace to put it when I asked her to put it away because I was helping Grant.

You might also notice that beside Grace is a sink full of dirty dishes. They are in there because I didn’t get a chance to help Grant do his chore of unloading the dishwasher yet. You will find a dirty counter in need of a good cleaning because eating healthy requires a lot of mess in my kitchen.

Also, what you don’t see is on the floor beside Grant are some bags of groceries that are still sitting there from yesterday when we went grocery shopping. There are two baskets of towels and blankets that have been sitting since Friday because our weekend was so busy and I haven’t had a second to get them done.

But what you don’t see is that behind the camera I have the biggest smile on my face. I smile because of Grace being silly. I smile because of hearing Grant laugh (which is seriously contagious and can turn your bad upside down the moment you hear it). I smile because Gracie wanted me to fix pancakes this morning and the color of choice was pink and orange. I smile because I get to wake up each morning to three beautiful kiddos. I smile because these two are the silliest and love to make each other laugh.

I smile because in this picture there is no disability. There is no disapproval. There is no discrimination.

I smile because in this picture I see love. I see laughter. I see acceptance. I see a brother and sister truly enjoying each other’s company. And I see pride. Pride in these two little people I get to call my own.

Because of this…I smile!

Moral of the story: sometimes it’s easy to look deeper and see the bad and judge someone because of what’s in the background. But sometimes it’s okay to take it for what it’s worth and find the beauty in it and smile!

Have a blessed day!

Slime…Every Mom’s Worst Nightmare

Okay maybe not every mom. I will say I’m in that category. My kids love slime…I love when they play with slime!

What?! How is she a mom and loves when her kids play with slime? Because the entire time they play with slime…they are quiet. I get time to do things around here that I need to do while they enjoy some sensory play fun.

I will say I’ve heard other mom’s talk about how they don’t like slime because their kiddos make a mess and it gets on their clothes and carpet and anywhere else you could imagine. Well when my kids play with slime they play at the kitchen table. They keep the slime on the table. It has dropped on the floor or even their clothes but we have hardwood under our table so it’s not a problem at all. As for the clothes. They know to take that piece of clothing off and I run it under hot water and all is okay.

My nine year old loves slime. My 8 year old son with Cerebral Palsy loves slime. My two year old loves slime.

It’s a win-win for us all!!

Just recently on a trip to Target Matthew found some slime in a plastic petrie dish with a frog in it. Of course it was in the Dollar Spot for only $1 so we had to get three…one for each of them. That was the best $3 I have spent in a long time.

Not only have Matthew and Grace played with it for almost an hour at a time with no fighting or pestering (who knew a nine year old and two year old could pester each other so much?!) but Grant also loves it. Grace is constantly asking to play with slime. She’s played with the frogs in it, she’s played with her dinosaurs in it. She’s played with her little Hatchimal surprise toys in it. She loves slime!! And when she plays with it, it’s usually for 30-45 min at a time which allows me time to do anything I chose to do…which is usually feeding Grant or sitting with him while he watches his ipad 🙂

Moral of the story: Don’t get so wrapped up in the bad and negative of slime so that you don’t enjoy the good and fun of it!

Have a blessed day!

Nonverbal Doesn’t Mean We Don’t Talk

Think about how many conversations you have with your child. Think about the hundreds of questions you get asked daily by your toddler.

Think about the questions you ask your 7 year old when they get in the car from school.

Think about the conversations you have with your nine year old, sixteen year old, twenty year old.

Now imagine all those conversations being made with a nonverbal child. Does it sound crazy? Maybe! But I have more conversations with Grant some days then I have with Matthew! I would say the same for Grace but she’s two…all she does is talk!!

I have conversations with Grant about literally everything going on in life. He wakes up in the morning and it’s “Good morning Grant. Did you sleep good? Did you have sweet dreams?” I get the usual smile and head nod yes. I read him the lunch menu for school and ask if he wants hot or cold lunch. It’s usually cold so I ask him what he wants, what kind of chips, which cookies. I talk to him about all the things I have to do. I talk to him about anything fun or exciting or things that I know will happen in his day that might be a little stressful for him.

We talk about the weather. We talk about the crazy videos he watches on YouTube Kids. I talk to him while I change his clothes and brush his teeth and fix his hair.

I walk him through everything I do at home. “Grant I need to clean.” “Grant I have to go to the bathroom.” “I guess I will sweep the floor, Grant.” EVERYTHING I do he usually knows about. Even to the point that sometimes I say it even when he’s not here…that might make me a little crazy!!

He gets in the car from school and it’s “How was your day?” “What therapies did you have today?” “What was your special?” “Did you eat all your lunch?”

We talk about anything and everything. I’m in big trouble if Grant ever starts talking because he knows some of my biggest secrets! We can also have a conversation without either of us saying a word.

One of my favorite things is when he laughs out loud about something that was said (usually that is completely inappropriate and he shouldn’t understand but he does) or something we are watching. A couple of weeks ago there was a video on Facebook of chickens chasing kids. Sometimes he would start laughing at even before I did which made me laugh even harder.

I won’t lie…it’s not always easy with him being nonverbal. But guess what…in those not so easy times we still talk. He will get mad and throw his hands down at me which means stop. Or he will screech at me or snap at me. Even in those moments we are talking.

He even has conversations on the phone. He talks to his Ma and Pa all the time on the phone. They know the sounds he make and what they mean. He answers every question they ask.

I can’t imagine a life without those quiet conversations we have. Where a look between us can mean so much. Where he can be watching a movie for the first time and hear the line “Nobody puts baby in a corner” and immediately look at me with this smile and I know that he is saying “Hey that’s what Pa says!”

Grant being nonverbal has taught me to be more aware of a person. Not just what they are saying but their body language, their tone. It’s tuned me in to being more aware of something going on with Matthew that his voice might not be saying.

In this day people take so much for granted. I remember being heart broken the moment I realized he may never “talk” but he does talk and boy does he have so much to say!

Moral of the story: just because the words don’t come out verbally doesn’t mean they are not being said! Learn to adapt and listen with more than your ears!

Have a blessed day!