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!

facebook

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!

I Loathe the Isolation

There are so many great things about being a special needs mom. I could sit here all night and type out my list of good, great and amazing reasons being a special needs mom is awesome. But that’s not why I’m here.

I want to write about something that is just to common in the world of special needs moms…isolation. Yes…it’s true…it’s real and it sucks!! I used to have so many friends. I went out every Tuesday night with my group of friends and we had a blast. Now I’m not going to lie a lot of those friends disappeared when I got married and that’s okay. That’s life. I was in a place a lot of them weren’t. That’s not what hurts.

So what does hurt? Those very few, very close friends I did have that have slowly diminished into no friends at all. I miss having friends to invite us to do things. “Hey we are going to the zoo do you and the kids want to come?” “Hey it’s a beautiful day. Want to join us at the park?” I long for those friends.

Being a special needs mom can turn into a very lonely world…seriously! I feel like since I don’t have a life that I can run and grab a drink because my husband works long hours so that I can stay home and make sure our kids are taken care of makes me seem like a bad friend. Trust me I wish when my husband got home I could say “Hey, I’m going to grab a drink with the girls. It’s been a rough day!” But that’s not the life I live.

I sometimes honestly feel like I have no one. I long to have that friend that our kiddos get together frequently and play even if that means making a few accommodations for Grant. I long for that friend that just knows when I’m having a bad day and shows up with a coffee in hand and we sit on the couch and watch our kiddos play in the living room. I want that friend that just gets it…gets my life and all the good…and bad…that comes a long with it. That understands that even when invited I can’t always make it but never stops inviting me.

Moral of the story: I love being a special needs mom! Wouldn’t trade it for the world because it’s made me into the person I am today. But I am human…and I miss having a person!

Have a blessed day!

Decisions are the Worst

They can be anyway!

We go through life from the time we are younger all through adulthood making decisions. Mostly decisions for ourselves. Then we meet someone and fall in love and our decisions aren’t all about us anymore but about this other person. Then we have kids and our decisions become bigger and more meaningful. We help our child learn to make decisions for himself and the one day they start making their own decisions and you hope and pray that you have taught them all they need to know.

However for parents of children with special needs it doesn’t always work like that. From the moment Grant was born I had to start making decisions for him…not too different than any other parent however my decisions were BIG decisions and will remain that way for the rest of his life. And yes I have a husband and we talk about things but the decision always falls on me. That’s a heavy burden to bear.

It started with simple decisions. Like when his early intervention physical therapist was coming once a week and asked if I would like to increase the visits to twice a week or every week. That was an easy decision to make. I’ve had a lot of easy decisions like that but every now and then I get the big ones that have me second guessing myself and finding hope in prayer.

The first really big decision came just before Grant turned one. My husband and I had talked about Botox but never really said yes or no. Finally I decided to take him in for the initial evaluation. I walked out of there with a list of twelve different spots that the doctor wanted to shoot needles into my teeny tiny little boy. My decision was no…he’s too young.

Then I found out about a form of therapy called ABM but the closest therapist that practiced this method was in St. Louis which was three and a half hours away. I decided to send an email. We went for a free session and I decided let’s do it. The problem…. we had to make the two to three day trip once to twice a month to get this therapy done. That meant my husband had to take a couple days off work, we had to rent a car (most the time because of crappy car history), we had to book a hotel and pay for the therapy that was not covered by insurance. Now this was a time that money was tight. It was really really rough. We did that for almost a year. We saw good progress but in that time money was scarce and what we did have went towards the trips to therapy. Needless to say we lost our house and filed for bankruptcy. But it was worth it and I’d do it all again because it’s better than wondering what if my entire life.

At almost a year we found out about a therapist that practiced the same form of therapy that had just moved to our area. Thank goodness! I decided to stop our trips to St. Louis and stay home. Again we saw progress but it got to be just too hard for various reasons. So I decided to end that journey. By this time he was almost two and I decided it was time for Botox.

For almost three years Grant got Botox injections every three months. At first it was amazing and did amazing things for his body. Then it was like we hit a wall and progress stopped. That’s when I expressed my concerns with his orthopedic surgeon and told him I only wanted Grant seen for hip evaluations and wanted to stop getting botox. A few days later I received a letter stating he was letting Grant go as a patient. Did I make the right decision? I knew I did at that point.

Next big decision came when I started researching Stem Cells. After lots of research I knew again it was something we had to try. However that meant a flight to Arizona, a few days stay in a hotel, and stem cells. All of which were not cheap at all!! But I decided we were doing it! After raising $6500 (just for the treatment) with the help of our amazing support system of family and friends we were off. Best decision for sure!! So much so that we are doing it again in a couple of months!

In the last few days I’ve made another big decision regarding Grant that I don’t want to discuss quite yet but one that took a lot of research and praying about. Still not sure what this journey will hold but praying it is the right one.

So in the last almost eight years my life has been full of making these huge, possibly life changing decisions for Grant. Some of which not only affect him but our entire family and our way of living. But the decision has to be made. Sometimes these decisions cause me lots of tears and anxiety and stress but I don’t know if we don’t try. Knowing that this is how decisions will be made for the rest of his life sending a shooting pain through my heart. Knowing that I’m the sole person responsible for anything and everything Grant does is daunting. But I would make every decision and be there holding his hand and cheering him on through the entire journey because I’m his mom and he is amazing!

Moral of the story: yes decisions are hard but someone has to make them.

Have a blessed day!