Tag Archives: cp

The Exhaustion is Unreal

Posted on by

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

Posted on by

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!

What Did You Just Say?

Posted on by

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!

Posted on by

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!

Surrounded by love…feeling so lonely

Posted on by

It’s a strange feeling. I’m surrounded by all this love and all these people yet at times…I feel so alone, overwhelmed, exhausted!

Don’t worry…I’m not depressed! Not even a little. Just feeling way under appreciated and like I said…alone!

I am one person! I’m not sure if all the people in my house realize that. I’m expected to be everything for everyone! Clean…constantly…NONSTOP! Why? Because if I don’t, no one does and you should see my house right now and what it does when I don’t clean! It’s overwhelming!! I’m embarrassed to say this but there is not one spot on my counter to put a plate. The dishes sit in the dishwasher clean waiting for me to put them away because no one else can. The laundry that I have literally been doing since last Thursday…that’s a week people!!! And as I’m trying to catch up from those yucky home invaders it’s piling up in closets for me to turn around and do it all over again. Right now 3 baskets worth sit in my living room needing to be folded and put away and my bed is piled up with the same thing. Those shirts will be hung over the bed post tonight so we can go to bed and left for me to do something with them tomorrow. And I won’t even start on the rest of the house. That’s just my living room and kitchen!

I feel like I’m expected to do it all…hell I’m a stay at home mom “what else does she do with her day?” I cater to a 2 year old. Okay that’s a little much. She’s actually a very polite and compassionate toddler. But I do play with her and we learn and we cuddle and I enjoy my last little two year old I will ever have because I know how fast time goes and I’m soaking it up. I don’t do that all day I try to get away and clean here and there but she always comes to me “mom run in circles me?” “I can’t Gracie I’m trying to clean.” “Peas?” She says so sweetly with her head cocked to the side. I dare you to try to say no to that.

Then it’s nap time…yes I can finally get something done. Okay do I clean the kitchen, clean the living room, clean the bathroom, do laundry (oh wait I’ve been doing that all day!), catch up on all my orders that people are so patiently waiting on, edit my best friends Christmas pictures she’s so patiently waiting on. How do you decide what should come first? By the time I decide and really get going she’s waking back up! And night time is out of the question. Last night I rocked Grant until 11pm. I’m not cleaning then I’m going to bed because he will be up in a couple of hours.

So most of you know I’ve been trying to get Green for Grant Creations up and running but guess what…THERE’S NO TIME!

I’m so sick of apologizing to people! I’m sick of telling people I’m trying…I promise. Because you know what…they don’t understand! I’m expected to get it all done! My only thing in life is completing your order. I’m so sorry! So after I finish these orders I have I will more than likely end the “business” just like I did Zip-Ease. The things I truly enjoy doing…but there’s no time.

And I usually feel like I have no one to talk to about it…why…no one understands! I don’t have a support system (that sounds completely harsh and totally bashing to my family and the few friends I have but that’s not at all what I mean! They are all amazing!!! And I am forever grateful to have them in my life!) but I need someone at the end of the day, especially a day from hell, to hold my hand, dry my tears and tell me I’m doing a good job! Or I just need someone to SHOW me at home that I matter….that I’m human!!

I will end this by saying I am in no way looking for a pity party! Those that know me know that it is NEVER what I’m looking for! I’m strong!! I don’t like to show my weakness! But I’m human and I want this blog to reflect that! I want it to show what life is really like being a special needs mom!

Moral of the story: if you think someone might be having a hard time or might just need a hug…even if they don’t look like they do..,hug them and tell them they are doing an amazing job and they matter!

Have a blessed day!

Scabies?! Ew!!

Posted on by

So our last month has been awful!! Back at the beginning of November Grant broke out in what we thought was a rash. I took him to his doctor and she said it looked like a viral rash and should go away in about a week. Two weeks later the rash had only gotten worse. It was extremely itchy and uncomfortable for him! I still thought maybe a viral rash that’s taking longer because that’s how Grant rolls! He woke up every hour to an hour and a half at night just crying because of how bad it itched. The only relief he could get was from the Young Living Seedlings baby lotion. Finally I started getting spots that itched horribly!

Okay this is not a viral rash!! This is awful!!

I took him back to the doctor to learn that he (and I) had Scabies!!

How nasty!! I immediately felt just gross. She gave us cream that all 5 of us had to rub from head to toe. We had to wash all blankets and put away stuffed animals for a few days. Well I did everything right but just as his spots were going away they started all over again!

No way!! This has got to stop!!

Now, as I’ve said before Grant has very limited mobility so imagine having a mosquito bite on steroids times 100 and not being able to scratch a single one. Oh and he can’t talk so he couldn’t even tell me where it itched or just how frustrated he was. I’m pretty sure he cussed me out a few times in the only way he can 😁 I can’t imagine how he felt because the itching was so incredibly intense!!

So we did the cream again…ugh!!! This time I meant serious business! Bedding has been washed three times in 4 days and every piece of clothing has been washed. Stuffed animals and anything that can’t be washed but can carry these damn bugs is wrapped tight in trash bags.

But was that the end? No! Because when Grant does something he does it big!! Some of his sores got infected and he got a horrible case of cradle crap!! Yes it is cradle crap because…well it’s just crappy!

<<<<<<<<<<<<
n given a shampoo to use 2-3 times in a week. A cream to rub on the infected areas 3 times a day for 7 days. Oh and they prescribed an antibiotic…but what is a side effect of the antibiotic? SEIZURES!! (That's another story for another day). So we said no way to the antibiotic and I will be calling in the morning to see if he can get a different one.

All this started on November 10th. Today is December 10th and he's is finally showing signs of relief for the first time in a month. He is so much more relaxed and he's smiled and laughed more this weekend then the has in the last 4 weeks! I'm so relieved to have my boy back!!

Moral to the story…DON'T GET SCABIES ðŸĪŠ

Have a blessed day!

Christmas Sucks!!

Posted on by

It’s true! Christmas sucks!!

Okay, okay maybe that was a little harsh!! It absolutely does not suck and it’s actually my favorite holiday and favorite time of year!

So then why would she say that?

Well let me fill you in. Buying gifts for my kids is my favorite part of it. Thinking about the joy on their faces when they see all the gifts they got makes me so happy. Grace is easy to buy for…she’s two and a girl…enough said! Matthew is pretty easy to by for…not only does he tell me what he wants but I know what he wants. He’s easy to buy for but at nine he’s also expensive!

Now Grant…that’s where the sucky part comes in. Grant is seven. He is a boy. He likes everything boy. He wants everything boy. Awesome…so what’s the problem? Grant has Cerebral Palsy!! He cannot sit on his own, he cannot stand in his own. He has very, VERY limited mobility in his arms and hands. He cannot hold a toy and play with it. He can’t even use a remote control car without help. That SUCKS!! I have the hardest time with him and the older he gets the harder it gets. He wants the awesome toys that all seven almost eight year old boys want but he just can play with it. I do my very best at playing with him and helping him play with all his toys but let’s face it…as much as I wish I could I can’t sit every minute of everyday and play with him I can’t and that…well that sucks bad.

But what is the amazing part? I still get him all the gifts he asks for…okay not all because let’s face it I’m not a millionaire…and his face lights up just like his brother and sister. That smile that lights up the room…that does not suck!!

Have a blessed day