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 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!

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!

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!