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!

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!