You Need A Chance To Exhale

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Is that not the most true statement.

I had a really good friend tell me this tonight while I was venting the weight off my shoulders. I felt this statement through and through.

Life has caught up with me and I just need a chance to exhale.

But how do you do that…how do you find the time to exhale when so much of your time is spent being needed? How do you find the time to exhale while still figuring out how to navigate the single mom/special needs mom life? How do you find the time to exhale when 91% of the time these three little people count on you to be their everything.

This week has been a tough week. Matthew has been sick in bed for 5 days with Influenza B and at risk for pneumonia. Grant had his 10th birthday this week and I feel like it was overlooked because of taking care of Matthew. Gracie has been having some major 4 going on 15 attitude this week that’s tested every last bit of my patience. This week I’ve laughed, sighed, smiled and cried but I haven’t taken the time to exhale.

The past six weeks Grant has seemed to forget how to sleep in a bed. I’ve been spending a majority of my nights sleeping on a recliner chair going from sitting up to laying back to sitting up to laying back again. He tosses and turns which means I lay awake. I’m exhausted. My body hurts. My arms are so weak from sitting the same way night after night. He finally started making some progress and then Matthew got sick. They share a room and so Grant hasn’t been able to sleep in there all week. I’ve spent all week trying to figure out how to get him to sleep. I’ve tried Gracie’s bed and my bed but there I sit on the recliner because it makes him comfy. And I forget to exhale.

I can feel me wearing down. I can feel the weight of it all weighing on my shoulders. I can feel the stress of it all bearing down on me. The constant being needed by someone. The kids being my responsibility almost all the time with the exception of a few hours on the weekends. It’s all weighing on me but the reminder that I just need a chance to exhale was just the reminder I needed. Now to find the time to do so!

Moral of the story: life gets crazy, life gets hard and life can wear you thin…but you can’t pour from an empty cup…you have to take time to exhale.

Have a blessed day!

Doesn’t Seem That Long Ago

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Ten years!

Ten incredibly lllooonnnggg but way too short years ago I made it Facebook official with this photo…

I was pregnant with our second baby!

Two months before this I found out I had endometriosis. I was told getting pregnant could very well be a challenge. After a few long conversations my husband and I decided to go ahead and start trying for another baby. We knew we didn’t want to wait too long between kiddos and if it might be a challenge we would start now because young naive us though “it will take several months probably almost a year”

The next month we starting trying and BAM big fat positive pregnancy test! I’m not going to lie I was a little scared and nervous. It wasn’t supposed to happen this fast. Matthew had only just turned 10 months!!

All the fears started rushing through my head. Did we do this too soon? Will I be able to love this new baby as much as I love Matthew? Did I cheat Matthew by not giving him enough mom time? But then someone told me that Matthew will never remember the time he had as an only child. He will always know his best friend and sibling and all the memories made.

After that I was able to start imagining the future. Will I have another baby boy? A forever best friend for Matthew? Or will it be a baby girl? Someone for Matthew to be the protector and take care of? Life had so many possible and life was so perfect!

I never imagine going to that first doctors appointment would change everything! so many unknowns. So many questions!! Over the next several months I’m sure there will be posts that walk down memory lane as I venture through one of the hardest times in my life.

Moral of the story: life is not something you can plan. You have no control. You have to just let go and let God!

Have a blessed day!

Today is a BIG Day!

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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?”

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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

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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

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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

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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!!

What No One Tells You

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When you get your child’s diagnosis you get a lot of the “your child will never” along with it.

Your child has Cerebral Palsy. He will never…

…walk

…talk

…feed himself

…have any quality of life (yes they tell you that!)

They tell you what to expect or what not to expect.

They tell you all of that. But what they don’t tell you is that there will be one phase from day one that will probably never change…

…sleep!

They don’t tell you to prepare yourself for the never ending newborn style sleep cycle and it’s exhausting. It’s something I was not prepared for!

I wasn’t prepared for my nine year old to only sleep two to three hours at a time at night. I wasn’t prepared for him to need a drink almost every time he wakes up whether it’s 10:30pm or 3:30am. I wasn’t prepared for then having to rock him back to sleep and so carefully put him back in his bed.

It’s been this way since day one. Grant has never been a good sleeper. There are so many things I attribute to his lack of sleep. If he gets hot, he can’t take the covers off. Same for if he gets cold, he can’t pull the covers up. He can only lay on his tummy and tries to get comfy but his body gets stiff and hurts after being stuck in the same position. He gets super stuffy at night and has no way to sit up and try to fix it. His tummy hurts from needing to go to the bathroom and laying on his tummy makes it worse.

I get it…I totally understand. I just wish someone had told me…prepared me. Because even though it’s been this way since day one, at times it gets truly exhausting doing it with no break night after night

But I do it…I sit here, knees curled up, arms falling asleep and neck hurting from sitting here with it cocked to the side…night after night because he deserves the world and while I can’t give that to him, what I can give him is comfort in knowing that even through the exhaustion and yes, sometimes tears, I’m always here to rock him back to sleep!

Moral of the story: keep pushing through. Fight the exhaustion. Fight the tired. Because he’s fighting an even harder battle and doing it with a smile on his face!

Have a blessed day!

Another Successful Party

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I must confess, I absolutely go crazy over birthdays. My kids birthday’s are probably more exciting to me than to them. I love getting to celebrate the day they came into my life and changed my world!

So yesterday was no different when we came together to celebrate Grant turning 9! First of all, I do not even know how nine years has flown by since Grant came into our lives and rocked our world. But it has. My littlest boy is getting ready to enter his last year in single digits.

When I was talking to him about where to have his party I knew what his choice would be. He chose a roller skating party. He did this for his party last year too and he just loves it. We rent out the rink so it’s just his party there. He gets to get out in his chair and roll around and feel like he’s just like everyone else. It’s the absolute best!

This year I had a week from the time I had to schedule his party to party day. I was really worried that his friends wouldn’t be able to make it and was really concerned when I had no RSVP’s except for those that I was able to invite on Facebook but I figured it didn’t matter we would have fun anyway.

Of course I was worried for nothing!! Some of his absolute best friends showed up and he had a blast just like I knew he would. He was all smiles as friends skated by him smiling and laughing right along with him. He had kids surround him as he sat waiting to eat cake. His smile radiated as we all sang Happy Birthday and the smile on his face when he opened presents was priceless.

One of my biggest fears when I found out he would have CP and especially as the realization set in that he wouldn’t talk was would he have friends. I never have to worry about that because look at this group that showed up to celebrate him!!

He opened presents of Fortnite characters, Hot Wheels cars, and a super big pack of Reese’s Peanut Butter Cups which are his favorite. His friends know him so well, a couple of them got him cars with buttons on top that he can push himself! They were all so incredibly thoughtful and so excited to watch him open their gift! He also got several gift cards and he’s so excited to go buy Xbox games that he can play with his adapted controller.

I do have to share this super special card from his best friend. I knew these two were close and I even told my mom that I really think they are best friends. This sweet card from his best friend, Jenna, confirmed that!

I always like to take time at each kiddos party to take a look around and soak it in. Last night, as I did that, my heart was so full of pride and love!!

Moral of the story: Never underestimate children and their ability to see past the disability and accept exceptional children for who they are…even to the point of being best friends!

Have a blessed day!

Tonight Hurt

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There’s no denying it…

Being a special needs mom is hard…like almost all the time it’s hard. But tonight was truly, hands down one of the hardest so far.

Let me start by saying that’s Grant’s school is absolutely amazing! Everyone from principal, to teachers, to staff, to lunch ladies and students. Amazing!! I have never once felt like Grant was ever overlooked or left out…until tonight!

Tonight was the 3rd Grade Shining Star night. One of my favorite nights next to S.T.E.M. Night. We get to go and see what the kids are doing in each of their specials. We participate in an activity in PE. Tonight was a fun basketball Make It, Take It game. Grant loved it as did all his other classmates, the parents and siblings. We were all smiles!

Next we went to the classroom to do a fun activity. We were one of the last to walk in. Each child is crowded around their desk with their loved ones doing a paper about their favorite things. Grant’s desktop was empty. I thought maybe I missed something and we have to get the paper from somewhere. I asked his sub (his amazing teacher had a baby early February so she’s on maternity leave…but we did get to see her and the baby tonight!) if Grant had a paper. Her response was “No he wasn’t in the room when we did them.” Now I completely understand Grant is not always in the classroom. But when all the other kids do a paper that is going to be done on a special night then make sure EVERY kid has one. If a kid was sick that day did they not have one? Grant’s desk was the only empty desk I saw. It’s not Grant’s fault. My heart shattered into a million pieces right there in that classroom (for the second time in less than three weeks but that’s a whole different story). We left the room because if I stayed in there the tears would’ve flowed.

We headed from there into the commons area and ran into the art teacher and got a sneak peek of the mask he made and the art work on display which again broke my heart because not one bit of it was done by him. The theme was baseball which I have no doubt in my mind he did choose. But that coloring and artwork was not his. So again a big tug at my momma heart.

Then we went to music…my heart was happy in music! His amazing (do you see a theme here 😁) music teacher wanted him front and center so he could interact with Grant. And he did just that!! Grant looked at him with such pride. Also a proud mom moment…I had him sitting cross cross applesauce and he was doing so so great! I was so proud! Even his teacher noticed and commented on how great he was doing sitting! Made me smile especially that she noticed!

Again, his school is amazing and I couldn’t imagine him being anywhere else! He walked in and was greeted by several of his friends. He even had one of his good friends tell him he looked nice tonight. I cannot stress that enough. But some transitions this year have not been as smooth as I had hoped and I think it’s getting to Grant.

Like I said being a special needs parent is hard enough. I’m reminded everyday…several times…of all the things Grant can’t do. I watch him watching his peers and wonder what is going on in the brilliant brain. I watch him long to do what other almost 9 year olds are doing wanting so badly to do that. But I also know all the amazing things he can do and we keep those on our hearts and try not to think about the negative. But tonight punched me in the gut and I just feel defeated! The tears streaming down my face show the pain in my heart.

Tonight hurt!

Moral of the story: this is a tough one tonight…even when life gets you down always find a reason to smile.

Have a blessed day!