I Truly Hate You Sometimes

Yes you CP!!!

My hate for you burns strong sometimes and tonight is one of those times!

I know I’ve talked before about Grant and sleep but it’s going to be a frequent topic of conversation because it’s something dealt with daily!!

This is what has been going on the last 3 nights and I just don’t know what to do. It now takes me 2-3 hours to get him to sleep. We cuddle and cuddle and he tosses and turns and whines and cries and fusses. He’s up and down. He wants a drink. He wants in his bed then cries.

I know something isn’t right but I don’t know what. He won’t tell me either. I ask if something hurts and it’s something different every time. Tonight it was his head, ear, fingers, tummy, leg and feet. That’s how many times I asked and all the different answers I got.

I try to reason with him. I try to explain to him that I can’t help him if he doesn’t tell me what’s wrong or help me figure out what’s wrong so I can help. We change positions. We get drink after drink. I’m at a loss!! I started typing this almost twenty minutes ago and have had to stop already. He’s back in my arms.

My heart is truly breaking for him. For us! We both get so incredibly frustrated! We stress each other out and when I put him down to take a breather and give myself a second he screams. He screams because he needs me…because he wants me.

Tonight is a night that I could scream from the rooftops “I HATE CEREBRAL PALSY!!!!” I don’t normally let it get to me. I don’t let it win. But tonight…it came close. However…it didn’t win!!

Moral of the story: life gets hard sometimes and it’s okay to get mad and scream and yell. But don’t let it consume you. Take a breath, stand back up and say bring it on!

Have a blessed day!

Worst Day of my Life!

Two years ago today I got the worst call of my life. I see the school number come up on my phone and wonder which boy isn’t feeling well. I answer as usual. It’s the nurse and she says “Beth it’s Beth. Grant is having a seizure…”

I can’t even tell you what she said after that. I was already in the car when she called. Gracie was playing in the passenger seat and I was cleaning the car waiting for my mom to show up so we could go to a consignment sale. I’ve never strapped Gracie in and flew to the school faster than that day!!

I walked in to see my boy having small convulsions and just completely out of it. His little eyes rolled back and face was twitching. His amazing para had him cradled in her arms and was talking ever so gently to him. I felt numb!! I wanted to scream and cry and hit something. But at the same time I was frozen. I had no clue how to help him and it broke my heart.

Finally he coughed and his para said “he’s done. He’s coming out of it” she then handed him to me. I was terrified. The paramedics came in and asked question after question. The next several minutes felt like a blur. I was so torn between him and what to do with Grace. Here she was only 5 months old and I literally just left her by the secretary. Luckily his amazing school staff watched her. They told me they had her and to take care of Grant. And they watched her until my mom made it up to get her.

That year he had three more seizures. Each of those times it happened at home. The next year he had three while in AZ before getting stem cells and after a day flying and driving and being exhausted. Then another in July when the temp in our house got ridiculously hot due to a broken a/c.

Each of those seizures was just as scary as the first but each time I felt more composed while my heart was breaking for my baby boy!! You don’t know the feeling of pure helplessness until you are holding your child in your arms and they don’t even know it. Watching their eyes roll back. Watching their mouth and lips smack. Watching their arms and legs get so stiff and convulse even if ever so slightly. And there is nothing you can do but watch and wait. You not only have to make sure your child is safe but you have to remember to check the clock as soon as it starts and continue to check it. Then it creeps closer to the golden number…5 minutes and as it creeps closer and you are comforting and praying, you have to mentally be deciding at what point you will administer the drug to help stop it. However you know that administering the drug will guarantee a trip to the hospital to be monitored. All these decisions have to be made in a few short minutes. Meanwhile you are fervently praying for it to stop on it’s own. I’ve been lucky enough that I haven’t had to give the Diastat to stop the seizures but the worry and the pain is still there. The wondering will this be the one that doesn’t stop?

Then they come to. Yes it’s over…but it’s not. You spend the next few minutes to possibly close to an hour or more helping them understand that everything is okay. You reassure them over and over that Mom is here and it’s all done and they are safe. But they are still worked up. He’s nonverbal and just went through that awful ordeal. I find myself wondering after each one if he knows what happened. Or does he know it’s coming before it starts. Does he know I’m there for him the whole time praying and comforting and loving him?

And then from the time the first seizure happens you are constantly on watch. The thought is always there. His first seizure was caused by a reaction to a Z Pack he was prescribed for strep. The next several were caused by motion. So I worried every hilly road we went over or every time he rough housed with his brother or Pa. I truly believe that seizures cause PTSD. If he’s staring off especially to the upper left I panic and shout his name. If he is asleep on my chest and his eyebrows twitch funny I jump into prepare for seizure. I sometimes feel like things I should be enjoying I can’t always truly enjoy for fear I might miss the initial signs and be prepared.

I knew that seizures were a possibility with Cerebral Palsy but I really thought we were out of the woods!! He was 5 years old and we had never seen anything close to a seizure with him.

What breaks my heart even more is that it doesn’t just affect me as his mom. It affects the whole family. Matthew has witnessed every seizure except the first one. And it terrifies him every time. It’s so hard to help Grant through a seizure all while making sure I’m comforting and reassuring Matthew the best I can. I remember in AZ after Grant’s third seizure in less than 12 hours Matthew wrote a poem that ended in “seizures are scary”. I hate that my 9 year old knows the signs and he is also always looking out for Grant to make sure it’s not going to happen.

I thank God every day that this is not an everyday occurrence and my heart and prayers go out to those that this is something they face every day. I also thank God for always placing his hand on me and guiding me through each one

Moral of the story: You never know how strong you are until being strong is the only choice you have.

Have a blessed day!

It Really Scares the Crap Out Of Me!

It does!! This whole flu…Influenza A…Influenza B…people dying from it…children dying from it.

I have a child with special needs. Is he medically fragile? Technically no…but also yes!! He has a weaker immune system due to his Cerebral Palsy. He catches literally EVERYTHING that goes around!! He’s also in mainstream school!

Protecting him at home is a breeze!! We wash our hands…we sanitize! We clean constantly!! But once he leaves our house it’s out of my control!!

Kid on the bus sneezes…Grant catches it! Kid in his class wipes his nose then helps Grant…he catches it!! And it scares the crap out of me!!

How quickly he can catch something that turns into pneumonia is scary fast!! And for kiddos like Grant on a normal, good day it would be so challenging for him to bounce back from pneumonia. But with the nasty flu season there could be no bouncing back!

So please…PLEASE!!!! If your child shows any signs that might be the flu…KEEP THEM HOME!! If they have a fever, don’t send them to school! They threw up the night before…don’t send them to school! And keep them home until they are 24 hours fever or symptom free. I know it’s hard. I know it might mean you have to take a day off of work. But to me and my family…it means the possibility of life and death for my son it means this awesome, amazing, ornery smile could be gone in a heartbeat!!

Moral of the story: please keep your sick kids home and cover your mouth and wash your hands because my son is my life!!

Have a blessed day!!

The Exhaustion is Unreal

You might find this topic a little redundant here but this is our life!

Here I sit at 5:50am knowing my alarm will be going off in less then an hour. At that time I will have gotten three hours of broken sleep. That makes it a grand total of five and a half hours of sleep in the last two nights.

My whole body hurts! Every inch of me aches. My neck is so stiff from having to sit with my head cocked to the side. My back is killing me and every little movement sends a shooting pain from my lower to upper back. My hands are numb and hurting because of my carpal tunnel. My knees are throbbing from being curled up and sideways. And my eyes burn.

The tears are streaming down my face!! I just want to sleep. I feel his body relax. Finally he’s in a deep sleep. I very careful stand up, trying not to scream from the pain, and take him to his bed. I slowly and quietly open the door and ever so softly lay him down and walk away.

He screams!! He screams like someone is hurting him!! I walk out and shut the door. He has to stop! He’s got to be exhausted. I stand there praying for him to sleep. No such luck!! I pick him and we make our way back to the living room to start all over!

I don’t know what the problem is. Is it due to the super blue red lunar eclipse moon or whatever? Possibly…gosh I hope so because then I know it won’t last much longer. Or is this his new thing? I do know he’s not hurting when I lay him down because he tells me. He does say yes to being scared but he nods with his ornery smile which makes me thing otherwise.

But I continue to do it night after night…me and me alone. Why? Because he deserves it!! Because he is my son. Because I love him with every ounce in me!! Because it’s not his fault he’s got the crappy disability that enables him from sleeping but also from talking and being able to tell me what’s wrong. It’s not his fault! So I will continue to sit here until my alarm goes off and my day starts…because he is mine!

Moral of the story: never give up and when you feel like you are going to break, close your eyes and ask God for strength!

Have a blessed day!

God Gives Special Needs Kids…Blah Blah Blah

I’ve heard the saying over and over. God gives special needs kids to special parents. So can someone explain to me what makes me so special compared to anyone else?

I ask this in all seriousness! My feeling is this…I’m not a special person! I’m not! God didn’t give me Grant because I am special. God gave me Grant and that’s what made me special.

I know people say this with only the best intentions and it doesn’t make me mad or upset me when they say it but I’ve always just wondered.

I am a regular mom who has become a better mom and a better human being because of my special needs son.

Nothing about me or my life before Grant was “special”. Heck I had only been a mom for 9 months when I got pregnant with him. I didn’t even have a full year of mom experience. To me that doesn’t shout “give her a special needs child because she is so special”. Nope! Just a regular mom who didn’t even have the whole mom thing figured out.

BUT…isn’t there always a but…I feel pretty freaking special that God gave him to me! I love that I was chosen to be granted this special gift! Grant has not only made me a better and special mom but he’s made our family special!

Moral of the story: it doesn’t take a special mom to have a special needs child…it makes you a special mom!

Have a blessed day!

Not Again! {FREE Printable Potty Chart}

So do you remember me talking about potty training? Yes the dreaded potty training that takes everything out of you but makes you oh so proud! Well…we are at it…again!

Yep you read that right. Grace was fully potty trained…well during the day, I was not even going to begin the night time craziness! Then she wasn’t. Okay so maybe it didn’t quite happen like that. The day after Christmas she got super sick with what I am guessing was a round of the flu. It was way way to cold to risk getting her out just to be tested so we stayed home and warm. She did great and had hardly any accidents even though she spent almost two weeks laying on the couch. Then she got better and the flu was gone and all of a sudden she forgot how to pee in the potty!!

What the heck!!!

So it didn’t start out too bad and I thought that maybe because she was feeling better and wanting to play she just didn’t want to stop and go to the bathroom…understandable. Then it just got worse and worse. She was not peeing in the potty at all and having accident after accident after accident. I wasn’t going to break so I kept her in undies and kept at it.

Then she started complaining about her tummy hurting…well kiddo you have to eat if you don’t want your stomach to hurt. Then it was her “Pee Pee” (okay we have boys and we’ve just always called it that. No we are not politically correct or whatever you want to call it but you do you and we will do us. Okay okay back to the story! Uh no…it has the be a UTI…right? Took her to the doctor this week and thankfully she went pee on the potty while we were there. Got a good sample and the results…negative! UGH! She had some redness causing irritation and then our amazing nurse practitioner…seriously we love her…said I would have to potty train all over again!!

NNNNNNNOOOOOOOOO!!!!!!

Deep breath! Here we go!

So last time candy did the trick but that was so last year…see what I did there 🙂

So I decided it was time for a potty chart and bucket of prizes. I took my inspiration from this potty chart from Richly Blessed and made my own little changes. My printable potty charts are available at the end. Anyway…off to Target we go. The bucket is filled and we have a long talk.

Guess what?! She’s done amazing!!!! For the last 2 days she’s only had 2 accidents and gone potty so many times! I’m so incredibly proud of her…again…and she’s so proud of herself! She has to show everyone her potty chart with all her stickers. We took it to my parents house last night and she was looking all over for Ma. “Ma where are you? Me show you my stickers.” Ugh too precious!

So I think we might be good to go…one can only hope!

Moral of the story: even though you might fail and want to give up…keep pushing forward!

Have a blessed day!

minnie potty chartTo get the Minnie Mouse Free Potty Chart Printable click here

Mickey potty chart

To get the Mickey Mouse Free Potty Chart Printable click here

The Last Time

Do you ever wish you had a time machine and could go back to a certain moment so that you can savor it one last time?

As a mom I have a lot of those moments but they are coming more and more with the growing of our final baby. Moments that you don’t realize at the time that it was the last time you will ever do that exact thing with your child. The last bottle you will ever feed your baby as you look into their big, beautiful eyes. The last time you will rock your baby to sleep. Those lasts that when you finally realize that it was the last it’s too late to truly treasure it.

I had one of those moments today. Last night I rearranged my two year old’s bedroom. Today we were playing in there and it hit me…maybe she’s having trouble sleeping because of her bed. I know weird thought. Well being the person I am when I get an idea I act on it. So I start taking her side off her crib. I was pretty proud of myself and she was so excited…until nap time.

For as long as I can remember when I put her to bed at nap time or bedtime she kisses me between the bars and gives me a big between bars hug. That’s our thing. So I put her down for her nap and there it was…it hit me hard…I will never get a between the bars kiss and hug again. Last night was the last time and I had no idea! If I had known I would’ve savored it just a little longer! I sat on my bed and bawled like a baby…quietly of course because if Matthew had heard me he would’ve been crying right along with me.

It really does break my heart how fast these kids are growing. I love the baby stage and if we lived in a perfect world I would be loving on a new beautiful baby right now…but we don’t…so we take the hand God have us and I have to say mine is a pretty good hand!! Even though I miss having a baby I truly love every stage of watching them grow. I know that I am so incredibly blessed! I have three amazing kids that are my everything.

I just wish it didn’t have to go so fast!

Moral of the story: always savor every moment as if it were the last time.

I will leave you with this poem that brings tears to my eyes! Have a blessed day!

What Did You Just Say?

As a special needs parent there are some things that happen way too often that can instantly tick you off!! It can be a phrase that you hear, stares that you get or even a certain tone someone uses to speak to your child.

I know people don’t mean any harm by what they say or do…well most people anyway…but when you have dealt with these same things on a weekly or even daily basis for years they get really old.

So let me list a few for you:

1. My son is not a baby!!

I get it…I really do!! He’s a little guy! Very little! But he’s NOT a baby! It always baffles me when people talk to him with the tone and pitch they would use for a 6 month old!! Or when they are repetitive. For example “He has a great smile. Yes you do you have a great smile don’t you?” What is that?! He’s got more than a great smile…although it is pretty freaking awesome…he doesn’t want to hear you go on and on about it. Did you notice that smile has three permanent teeth in it. Last I checked babies don’t have big teeth!!! Why don’t you ask him about school, or sports or his girlfriend then you will see a great smile!

2. “I’m so sorry”

What the what?! Again I get it! Sometimes people just don’t know what to say…but really? Saying “I’m so sorry” about my child sendsmy blood rolling!! What exactly are you sorry for? The fact that he’s in a chair but yet goes everywhere and does everything? The fact that he can’t stand or run but plays baseball? The fact that he’s nonverbal but we have so many conversations? You saying that to my child is no different than me saying “Oh little Susie has freckles…I’m so sorry!” or “I saw your son has brown hair…I’m so sorry!” So the next time you are faced with this and your natural response is “I’m sorry” maybe try “how is he doing?” Instead because I’d much rather gloat about how awesome he is rather than give you my fake smile while imagining myself throat punching you 😁

<<< strong>When people talk to me and not him.<<<<<<<<<<
n! Can he talk? No but he can hear and he can understand and he wants to interact. If he can't answer I will help him by making a yes or no question but talk to him. People ask me questions like he's not even sitting there…ask him!!

<<< strong>”Is he going to eat?”<<<<<<<<<<
lot at restaurants and it drives me crazy! The waitress/waiter comes to take our drink order and they almost always skip over Grant. I always have to stop them and tell them what he wants. Then they come to take our food order and way more than I should I hear "Is he going to eat?" Nah I though we'd sit and let him starve while we all eat!! YES HE'S GOING TO EAT!!

<<< strong>”Awe someone is tired”<<<<<<<<<<
ause I don't see any tired kiddos here!! Trust me come to my house at bedtime and you will still see no sleepy kiddos!! I don't hear this one as much anymore because he's getting much stronger in his neck. It usually happens at the grocery store when he's in his GoTo Seat or I'm carrying him. His muscles fatigue sometimes from holding that big ole brain up and he drops his head. Does that mean he's tired? Umm no that means he's working hard!! I've even had people say "look at that he's sleeping" he looks up at them and then looks around like who? Silly boy!!

<<<<<<
top my list there but could go on! I've often joked that I'm going to teach him to flip the bird when things like these happen!! Or make a button on his device that says "I'm not a freaking baby!" How funny would it be for him to say that when someone is talking to him in that obnoxious voice? I think it would be priceless!

Moral of the story: just because someone doesn't "look" a certain way or has a disability doesn't give you the right to take away what they do have with your ignorance!

Have a blessed day!

Here I Sit…Here I Stay!

Hi!! It’s 9:50pm on a Sunday night.

What are you doing? Probably getting comfy and getting ready to go to bed. You’ve got the kids down and had time to spend watching TV or reading a book or even taking a bath! That sounds amazing!

Oh what am I doing you ask? I’m sitting here rocking my special needs child for going on almost two hours.

I’ve seen many special needs blogs that discuss their daily routine. Some are so thorough they detail each hour of the day. But this is not that blog. I’m going to clue you in on what my night looks like with Grant, my 7 year old with Cerebral Palsy.

7:30-8:00pm – start getting him and my 9 year old ready for bed (they share a room). That includes changing Grant into jammies, changing his pull-up which he hates and giving him a drink.

8:00-8:30pm – bedtime! Put my 9year old to bed and scratch his head (I’ve done it since he was two and he said I will always have to). Then lay Grant in his bed, turn on the humidifier, give kisses and shut the door.

8:30-8:35 – go to the bathroom and take my contacts out and take my place on the couch. My husband gets Grant (who has been crying since I left the room) out of bed and brings him to me. This is where my next usually 2 hours takes place!

This is where I stop the usual hour by hour play commentary because that’s not possible. Every night is a different struggle.

Some nights it takes 30-45 min and he’s back in his bed sound asleep. But…that’s on a good night which here lately have been very few and far between.

Let me take tonight as an example. I laid the boys down at about 8:15am. Got in my position and that’s where our night is still taking place at 10:15pm.

He has had 3 cups of milk, I’ve rubbed him with oils, we’ve talked, and we’ve gotten frustrated with each other! He is nonverbal however very very cognitively aware and can shake his head yes and no. However, he’s decided tonight he isn’t going to make it easy!!

Round one: he went to sleep on my chest like usual. Then he starts his wiggling and moving. Ask if he wants to go to his bed and he says yes. Take him to his bed and get back in the living room. My two year old quickly hops up in the chair with me. A quick 5 minutes later and he’s crying again. I move Gracie back to the couch with dad and get back in position.

Round two: he just isn’t falling asleep. It’s now 9:25pm and I’m at a loss. I ask him what’s wrong and he looks at my hair. “Is your head itchy?” He still has extremely dry skin and itchiness from the scabies treatments. So I rub some lotion on his head. Okay we have to be ready now…nope! He starts burrowing his head into me and the grinding his teeth (I’m surprised he still has teeth)…here we go again!

Round three: at this point the frustration for both of us is setting in! For me mostly because he won’t tell yes or no to my questions when I know he can. I go through the run of the mill..does your tummy hurt? Does your head hurt? Legs? Feet? Do you itch? He just stares at me. At this point I had to set him down long enough to go to the bathroom to recompose!! Come back in and rub him with oils again. He falls asleep! Yes! Finally!! Nope! Again wakes up and wants in his bed only to start crying again…back in position!

Round four: I apologize for my frustration and give him kisses. He gives me his handsome smile that says “I love you, Mom”. I take a deep breath and don’t say another word. I bunch the blanket up where he can’t see his dad or crazy sister. Finally his eyes drift shut and he’s out! But wait…there’s more! He wakes again…okay his loud and crazy sister woke him when she should’ve been winding down herself! But he asked to go to bed. And so far…knock on wood…he’s stayed asleep. That was at 10:33pm.

So let me recap! I laid him down at 8:15pm and finally at 10:33pm he fell asleep!!

I wish I could say he will be asleep for the night but that’s not the case. He will then wake up anywhere from 1-3 times before I wake him up at 7:30am for school.

So yes the days are tough with a special needs child but the nights are the toughest time of the day…at least in our house!

Moral of the story: even though times might be tough, when he looks at me with love it makes it all okay!

Have a blessed day!

School is Back in Session!!

Ahhh….the sweet sweet sounds of my 2 year old snoring and silence!

Yep school is back in session for my oldest two and it feels…well let’s be honest…amazing!

Don’t get me wrong I love my boys with all my heart but all you moms understand what I’m saying. The past two weeks were just a little crazy and I’m so glad to be back to our “normal” or as normal as we get. And to have just a teensy bit of time to myself…not much but  just a little. I might get to watch a TV show I’ve missed out on!!

A lot happened over the break but yet nothing happened at all. Makes sense right? My husband got in a car wreck on Christmas Eve morning making a flour run. He was not hurt, nor were the people in the other car, but pretty sure the car is totaled. So after Christmas we were dealing with that fun. Since it wasn’t his fault we’ve had to deal with the other insurance company but they’ve really been great. Got us a rental asap and have been on top of it. So no we deal with the stress of (probably) having to get a new car but everyone is safe and that’s all that matters.

Now let’s talk these kids over break. We literally stayed in jammies until it was time to change into new jammies for the night! Lazy, right? Yes indeed but it was just what we needed.

The day after Christmas, Gracie came down with the flu. Thank goodness it wasn’t the throwing up flu but the highish fever and awful cold. She’s still fighting the nasty cough and runny nose so that’s been fun!

My 9 year old decided to start having an attitude over…EVERYTHING!!!! So I spent a good portion of my break telling him to watch it. I do have to say though that until now I’ve never seen this attitude so I guess I can feel pretty lucky. He did have his moments of his true sweet self and made sure to tell me he loved me several times a day. But when he wasn’t being his sweet self he was Moody Mattie…or as we call it “MM”. He did everything he could to pester his poor sick sister who wanted nothing to do with anyone but me!

Then there is Grant. Usually he is the most frustrating. Sounds awful but I don’t mean it the way it sounds. Usually he is getting mad and frustrated at me because he wants to play play play and that would’ve been so so hard since every time the thought barely crossed my mind to sit Gracie would need something. Since he can’t get up and do anything on his own he usually is ticked most of the day but he was a typical 7 year old boy completely content watching YouTube!

So all in all it was a very nice and relaxing break…staying up later than usual and sleeping in. And it was exactly what we all needed. But I did breathe a little sigh of relief and maybe did a little happy dance when I got the two crazies on the bus. Now to take back control of my house!!

Moral of the story: No matter how much you love your kiddos it’s always refreshing that first day back to school!

Happy 2018 everyone!!