Today is a BIG Day!

Do you see this boy? This smile? Those bright eyes? Today is a big day for him…today he is…

Can you believe it? It’s been two years since I’ve watched his eyes go up to the right and his eyebrows start to twitch. Two years since his started smacking his lips and his hands start shaking. Two years since I’ve had to sit there holding my baby boy, fighting back the tears, praying for God to make it stop while telling him over and over “Mom is right here. You are okay!” It’s been two years since I’ve felt that absolutely helpless feeling.

I truly thing that PTSD from seizures is a real thing. That awful feeling you get in the pit of your stomach when the school nurses number shows up on your phone!! Or when you look at your child and they are staring into space but that just happens to be looking in the same direction as when their seizures start and your heart skips a beat. (By the way he likes to do that and ignore me for a sec then smile and look at me like “Gotcha!” Silly kid!)

It’s been almost three and a half years since Grant’s first seizure when I got that awful call from school that changed our lives. The feeling I felt when she said the words “Grant is having a seizure” will never go away! Ever!! I can still tell you exactly what I was doing and every moment from then until the hospital. It’s all burned into my brain. And I can tell you the date of every seizure after that and what caused it and how it looked and what happened. It’s all something I will never forget…but also something I wish I never had to.

When your child has a seizure, and then more, your life changes…at least mine did. I find myself being so aware of triggers. First one caused by new antibiotics…so now before he takes any medicine that is new to him I research the heck out of it. If it has even the slightest chance of seizures it’s a no go (which is almost everything by the way even Benadryl). Second was caused by motion when jumping on the trampoline…okay so no more fun on trampolines or bouncy houses for Grant. There was two caused by heat…have to keep a very close eye on him when the temp gets hot because I’m not sure what his limit is. I have to worry when driving on hilly roads. I have to worry when he’s rough housing which he loves to do. All of this goes hand in hand with the PTSD I begin feeling when I think about those seizures.

The amazing thing is that Grant knows his limit. If he’s getting too hot and he knows it I just have to ask if he’s okay and he will shake his head yes or no. On the Fourth of July watching the fireworks he knew when it was too much and let me know. That makes me feel so much better but I just always have that fear I will look at him and he will be in the starting stage of a seizure.

Even though that feeling is always there…always on my mind…that fear will never ever go away…and I hate it…I absolutely celebrate days like today. This kind of huge accomplishment that makes me and Grant punch in and high five!

Moral of the story: As a special needs mom, PTSD is real…and life changing…but we can’t forget to celebrate the accomplishments!

Have a blessed day!

“Mom Can I Help?”

Do you ever hear those words and cringe? Maybe cringe isn’t the right word…it sounds a bit to harsh. Do you ever feel like when you hear those 4 words you could snap your fingers and be somewhere all by yourself and just focus on what needs done?

Just imagine…you need to stain so many pieces of wood and you only have a two hour time frame to do that. So you get to work. You work for two hours uninterrupted. You listen to music as loud as you want, or maybe catch up on that podcast you’ve become obsessed with. And you work! You get it done…ahh..

Then you get woke up from that daydream with “Mom can I help?”

Now let me stop and right here and just make a quick note and say that I seriously have an amazing ten year old. Matthew is always helping anyone and everyone that he can. He loves learning new things and always eager to lend a helping hand.

So…when he comes up to me and asks to help I almost always say yes. Especially when he says that Pa taught him how to stain so he’s really good at it. Saying yes is hard for me. I’m a Virgo through and through and perfectionism runs through my blood! Something I’m trying to work on is letting go of the reigns and putting my trust in someone else to do the job for me. Okay that’s a little far fetched…if it were anyone other than my kids asking I’d easily say “Nah I’ve got it. Thanks for the offer though.” Because let’s be honest…no one can stain a piece of wood as perfect as I can 🤦🏼‍♀️🙄 Please!

But I did it…I said yes. And guess what…he did amazing!! He might have put it on a little thick and will make sanding it a little bit harder but guess what…I’m 99% sure he will also offer to help sand so that will be a lesson learned on his part when his arms feel like they are going to fall off (don’t ask how I know that he will feel that way because I’ve never done this!).

I am so thankful for this boy and his helpfulness…even if he talks nonstop the entire time he’s helping.

Oh and another side note…I also had this crazy girl wanting to help me paint. So she did just that!

Moral of the story: kids will never learn if you don’t say yes! It’s hard…I know! Who has time to go back and redo what they messed up…you do! Time with your kiddos is so incredibly valuable. You can have the most amazing conversations sitting there staining some wood with your ten year old!

Here Chicky Chicky Chicky

Guess what?

My kids got chickens!! I never thought in all my life that I would have kids that were so incredibly excited about chickens. But here I am, chasing chickens around trying to catch them so the kids can hold their chicken.

Now I’m not a bird person at all. I like to watch birds outside. I don’t like to have birds in a cage in the house and I certainly never planned on holding any chickens. I think they are all gross and I feel like if I touch anything that a bird has touched I will get a disease…even a feather! Do not touch me with some random feather you found on the ground! Now I know some people are bird people. I have a friend who’s daughter is amazing with birds…but that’s just not me.

So when Pa said he was getting a chicken coup and my kids could each pick a chicken I responded with “As long as they stay at your house!” And they did just that. These little chickees are living the best life at Ma and Pa’s. And every day when we are there we definitely have to go check on them.

Matthew’s chicken is Flugal (I know he will be so mad at me because I probably got that wrong) which means wing in some language. She’s a pretty black chick with white lines. He does awesome at helping take care of them. He gives them food and water and when he’s there and they need let out or put away for the night he’s on it.

Grant’s chicken is Snowball (She’s all white!). Snowball is the smarty pants of the bunch. She has to show them all how things are done. She was the first to go up the ramp into the roosting area and the first to lead the pack back out. She’s one smart chick! Grant loves Snowball as long as Snowball isn’t on his lap. He’s not fond of holding her.

Gracie on the other hand is my little animal lover. Her chicks name is Leah (yes she’s named after a character on Shimmer and Shine). She came up with it all on her own. She’s a black chick with white splotches. Gracie is so cute to watch with her chick. She talks so sweet to it and is constantly wanting to hold Leah and have her play with Grace. When I was trying to take a picture Gracie was saying “Come on Leah, come on girl, look at mom” then she took Leah into the playhouse so she could play with her.

So yes…my kids are now chicken kids and it’s the cutest thing to watch! Now if I can convince my parents to get goats!!

Moral of the story: It’s (usually) never a bad thing to get a new pet. It teaches the kids great responsibility.

My Parents Bought A Pop-Up

We used to go camping all the time when we were kids. So many summers were spent in a tent or in the pop-up trailer we had that my mom decorated and made more amazing than any pop-up I’d ever seen. Camping was our jam! And we loved it.

There were so many memories made sitting around a campfire, sleeping in a tent, riding rollerblades around the campground and watching my dad wipe out, making cookies over a campfire, having to evacuate to a Dairy Queen while a bad, bad storm rolled through. Those are all memories we still talk about today.

But I have a confession…my kids have never been camping!! I cannot believe that I have a ten year old, nine year old and three year old and they have never been camping. One of my absolute most favorite things to do as a kid and I haven’t made those memories with them.

I plan on changing that because my parents bought a pop-up!! Now I have to admit I was pretty excited when I found out. And even though it isn’t exactly like the one we had it still brought back so many memories. But to see my kids walk into this pop-up and just make it their home made me realize that it’s time.

Matthew was blown away by the fact that there was a stove in it and he just kept showing all the things he had no idea were in a pop-up…like how you can zip the windows up when it rains. Gracie was immediately obsessed with the beds. She had to go into Ma and Pa’s house and get some toys. All three kids sat on/by the bed and played with toys just like my brothers and I did when we were little. It was so awesome to watch.

So now we must go camping!! It might start out just in the yard down at the lake but that start is better than nothing at all.

Moral of the story: Make the memories. Stop coming up with excuses or putting it off and just go out and make the memories!

High Five to Special Needs Moms

Yea that’s right! I mean you!

To you, the mom who just took your kiddo (or kiddos) to the store and barely survived the breakdowns of your special needs kid. You, who made it through the rude stares and tisks from those “perfect” moms who have no clue what your day looks like. High five to you!!

To you, the mom whose child has never said a word. You, the mom who has never heard “Mom” or “I love you” or “thank you, Mom.” To you, the mom who, even though your child can’t speak, you know exactly what he’s saying, or needs, or wants. To the mom who has a thousand conversations with your nonverbal child. High five to you!!

To you, the mom who sits here and reads this as your eyes get heavy and you want so badly to sleep but you know that’s not happening yet again tonight. To the mom who is running on so little sleep that your body is literally exhausted. To the mom who doesn’t know if you can make it through another sleepless night but yet you continue to night after night. High five to you!!

To you, the mom who has become a taxi and whose whole life is consumed with driving to therapy and doctors appointments. High five to you!!

To you, the mom who spends more time on the phone than any human should have to. Calling insurance to fight for that piece of equipment that your child DOES need to have a good quality of life. To you, the mom who has to call and schedule all those therapy and doctors appointments. Who has to repeat your child’s information and life story so many times you could say it in your sleep. High five to you!!

To you, the mom who is sitting in a hospital room, in a stiff hospital chair beside your child’s bed as you pray for God to protect your baby!! You, the mom who doesn’t know what the next moment will bring. You, the mom who the hospital staff knows by name. High five to you!!

To you, the mom who just watched your child accomplish a HUGE milestone. Whose smile is so big people would think you won the lottery. To you, the mom who is so filled with pride right now that you literally feel like you might explode! High five to you!!

To you, the mom who is about to enter yet another IEP meeting only to be beat up and torn down hearing everything your child can’t do. You, the mom who gets in the car after the meeting and the tears fall. You, the mom who has to fight to get the services your child needs from the school. High five to you!!

To you, the mom who stands in the shower and let’s the tears fall and silently cries because this life is hard. This life isn’t fair for your child. This life is a constant uphill struggle. It’s a marathon that doesn’t end. High five to you!!

Moral of the story: This special needs mom life is not easy. Most days it’s hard…very hard! But you’re not in this alone! We’ve all got this! Some days it may not feel like it. Some days It may feel like the world is falling down around us. But there are those days that we feel like we are walking on the clouds. Use those days to push through the tough ones. Because when life knocks us down to our knees we always come out of it standing tall! So high five to that!!

Sometimes I Get Angry

Tonight…tonight I’m angry!!!

I’m angry that my little boy has to fight and struggle when it comes to every aspect of his life.

I’m angry that things that come so easy to everyone else doesn’t to him.

I’m angry that I have to wipe tears that shouldn’t be shed.

I’m angry that he has to have days where he can’t control his slobber and he is on edge all day because his tummy hurts

I’m angry that every week sometimes a couple times a week I have to do the thing he hates most to help him just go to the bathroom.

I’m angry that he has to sit on the potty forever and sometimes still gets nothing out.

I’m angry that he pushes with all his might…so hard he throws up… over and over…but still nothing.

I’m angry we can be sitting here almost two and a half hours after bedtime and he still can’t stay asleep.

I’m angry that I have to sit inches from his face and practically coach my 8 year old like a woman in labor every time he sits on the potty.

I’m angry that it’s only him and I in this every single time.

I’m angry that there are no breaks. That he and I, together, have to work through our frustrations not only with the situation but also with each other.

Tonight I’m just angry!! I don’t have these nights very often…I don’t allow it…but sometimes they creep in. I don’t want your pity and I don’t want any words of advice right now (I do so appreciate all the words of advice but not right now) ❤️

Tonight I just need to be angry. I need to feel it deep. I need to cry myself to sleep (or hopefully cry it out in the shower I still have to take before I can lay down and shut my eyes because I get no breaks to even shower!!).

Tonight CP…I’m angry at you!! Tonight…I hate you!! And that’s okay because I don’t often let you get the best of me and neither does Grant but tonight…as we sat on the toilet and both had tears running down our faces you won for just a split second.

Moral of the story: it’s okay to have bad days. It’s okay to scream and cry and want to punch something. Feel that and be in it. Then take a deep breath, stand up, hold your head high and keep on going!

Have a blessed day!

Yes I Am Sitting Here Again

Yes tears are in my eyes and slowly and silently overflowing down my cheeks.

Yes I am holding my eight year old son who has Cerebral Palsy and is nonverbal.

Yes I’m wondering how many times he will wake up tonight.

Yes my mind is racing with what could be wrong. Does his tummy hurt since he has barely eaten anything? Is his ear bothering him? Does he need to poop? Did he have a bad dream? Is he scared? All these thoughts and more are racing through my mind just trying to figure out how to help him.

Yes he got frustrated with me once again and yes I got frustrated with him.

Yes…once again…it’s just me and him to work it out on our own.

Nights are rough. Most of you know that from my previous posts. Some nights are easier than others but most nights are sleep deprived and frustration filled.

Night after night I do it on my own.

Being a special needs parent is hard. But being a special needs parent who carries the weight on my shoulders is that much harder. I very rarely get a break period…but at night it never happens.

I get him ready for bed, I fix his nighttime drink, I rock him, I lay him down in his bed. When he wakes up, I get him and do the cycle all over again.

Sometimes it takes everything I have to keep my eyes open. Sometimes we raise our voices at each other. And yes…sometimes there are tears.

Sometimes I would give anything for someone to say “Hey I got this!” when I hear him wake up and to just let me lay there.

But it’s in those moments of pure frustration and sleep deprivation that it allows me to take a deep breath, look into his big hazel eyes and talk just to him and no one else. It’s in these moments I get to truly remind him how much I love him and how if he will let me and help me then I can help him. It’s in these moments that I can feel him listening and hanging on to every word I say. And when I’m finished and ask if he’s ready to cuddle and go to sleep and he gives me his reassuring smile and nod, it’s in that moment that I can feel the weight shift.

As I feel him drift off to sleep and his little trapped body relax, it’s in that moment that I’m reminded why I am his Mom!

Moral of the story: even in the moments of feeling frustrated and alone there is still a reason to take a deep breath, find the good and shift the weight!

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!

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!