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 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!

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!

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!

Surrounded by love…feeling so lonely

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!