I Smile Because…

Look at this picture…what do you see?

After looking for a second you will obviously notice Grace being silly and Grant cracking up.

Look a little longer and some of you might be saying “Look at the counter and sink!” Or “Look at all that junk all over the floor!” Or “Is that a TV in her kitchen?”

Yes! Look in the background. You will see chairs scattered, a printer on the floor, a misplaced Spongebob desk that needs fixed. You will see a broken TV that I have been needing to get rid of for a couple months and yes that’s a plate of food that looked like a good place for Grace to put it when I asked her to put it away because I was helping Grant.

You might also notice that beside Grace is a sink full of dirty dishes. They are in there because I didn’t get a chance to help Grant do his chore of unloading the dishwasher yet. You will find a dirty counter in need of a good cleaning because eating healthy requires a lot of mess in my kitchen.

Also, what you don’t see is on the floor beside Grant are some bags of groceries that are still sitting there from yesterday when we went grocery shopping. There are two baskets of towels and blankets that have been sitting since Friday because our weekend was so busy and I haven’t had a second to get them done.

But what you don’t see is that behind the camera I have the biggest smile on my face. I smile because of Grace being silly. I smile because of hearing Grant laugh (which is seriously contagious and can turn your bad upside down the moment you hear it). I smile because Gracie wanted me to fix pancakes this morning and the color of choice was pink and orange. I smile because I get to wake up each morning to three beautiful kiddos. I smile because these two are the silliest and love to make each other laugh.

I smile because in this picture there is no disability. There is no disapproval. There is no discrimination.

I smile because in this picture I see love. I see laughter. I see acceptance. I see a brother and sister truly enjoying each other’s company. And I see pride. Pride in these two little people I get to call my own.

Because of this…I smile!

Moral of the story: sometimes it’s easy to look deeper and see the bad and judge someone because of what’s in the background. But sometimes it’s okay to take it for what it’s worth and find the beauty in it and smile!

Have a blessed day!

Slime…Every Mom’s Worst Nightmare

Okay maybe not every mom. I will say I’m in that category. My kids love slime…I love when they play with slime!

What?! How is she a mom and loves when her kids play with slime? Because the entire time they play with slime…they are quiet. I get time to do things around here that I need to do while they enjoy some sensory play fun.

I will say I’ve heard other mom’s talk about how they don’t like slime because their kiddos make a mess and it gets on their clothes and carpet and anywhere else you could imagine. Well when my kids play with slime they play at the kitchen table. They keep the slime on the table. It has dropped on the floor or even their clothes but we have hardwood under our table so it’s not a problem at all. As for the clothes. They know to take that piece of clothing off and I run it under hot water and all is okay.

My nine year old loves slime. My 8 year old son with Cerebral Palsy loves slime. My two year old loves slime.

It’s a win-win for us all!!

Just recently on a trip to Target Matthew found some slime in a plastic petrie dish with a frog in it. Of course it was in the Dollar Spot for only $1 so we had to get three…one for each of them. That was the best $3 I have spent in a long time.

Not only have Matthew and Grace played with it for almost an hour at a time with no fighting or pestering (who knew a nine year old and two year old could pester each other so much?!) but Grant also loves it. Grace is constantly asking to play with slime. She’s played with the frogs in it, she’s played with her dinosaurs in it. She’s played with her little Hatchimal surprise toys in it. She loves slime!! And when she plays with it, it’s usually for 30-45 min at a time which allows me time to do anything I chose to do…which is usually feeding Grant or sitting with him while he watches his ipad 🙂

Moral of the story: Don’t get so wrapped up in the bad and negative of slime so that you don’t enjoy the good and fun of it!

Have a blessed day!

Nonverbal Doesn’t Mean We Don’t Talk

Think about how many conversations you have with your child. Think about the hundreds of questions you get asked daily by your toddler.

Think about the questions you ask your 7 year old when they get in the car from school.

Think about the conversations you have with your nine year old, sixteen year old, twenty year old.

Now imagine all those conversations being made with a nonverbal child. Does it sound crazy? Maybe! But I have more conversations with Grant some days then I have with Matthew! I would say the same for Grace but she’s two…all she does is talk!!

I have conversations with Grant about literally everything going on in life. He wakes up in the morning and it’s “Good morning Grant. Did you sleep good? Did you have sweet dreams?” I get the usual smile and head nod yes. I read him the lunch menu for school and ask if he wants hot or cold lunch. It’s usually cold so I ask him what he wants, what kind of chips, which cookies. I talk to him about all the things I have to do. I talk to him about anything fun or exciting or things that I know will happen in his day that might be a little stressful for him.

We talk about the weather. We talk about the crazy videos he watches on YouTube Kids. I talk to him while I change his clothes and brush his teeth and fix his hair.

I walk him through everything I do at home. “Grant I need to clean.” “Grant I have to go to the bathroom.” “I guess I will sweep the floor, Grant.” EVERYTHING I do he usually knows about. Even to the point that sometimes I say it even when he’s not here…that might make me a little crazy!!

He gets in the car from school and it’s “How was your day?” “What therapies did you have today?” “What was your special?” “Did you eat all your lunch?”

We talk about anything and everything. I’m in big trouble if Grant ever starts talking because he knows some of my biggest secrets! We can also have a conversation without either of us saying a word.

One of my favorite things is when he laughs out loud about something that was said (usually that is completely inappropriate and he shouldn’t understand but he does) or something we are watching. A couple of weeks ago there was a video on Facebook of chickens chasing kids. Sometimes he would start laughing at even before I did which made me laugh even harder.

I won’t lie…it’s not always easy with him being nonverbal. But guess what…in those not so easy times we still talk. He will get mad and throw his hands down at me which means stop. Or he will screech at me or snap at me. Even in those moments we are talking.

He even has conversations on the phone. He talks to his Ma and Pa all the time on the phone. They know the sounds he make and what they mean. He answers every question they ask.

I can’t imagine a life without those quiet conversations we have. Where a look between us can mean so much. Where he can be watching a movie for the first time and hear the line “Nobody puts baby in a corner” and immediately look at me with this smile and I know that he is saying “Hey that’s what Pa says!”

Grant being nonverbal has taught me to be more aware of a person. Not just what they are saying but their body language, their tone. It’s tuned me in to being more aware of something going on with Matthew that his voice might not be saying.

In this day people take so much for granted. I remember being heart broken the moment I realized he may never “talk” but he does talk and boy does he have so much to say!

Moral of the story: just because the words don’t come out verbally doesn’t mean they are not being said! Learn to adapt and listen with more than your ears!

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!

Decisions are the Worst

They can be anyway!

We go through life from the time we are younger all through adulthood making decisions. Mostly decisions for ourselves. Then we meet someone and fall in love and our decisions aren’t all about us anymore but about this other person. Then we have kids and our decisions become bigger and more meaningful. We help our child learn to make decisions for himself and the one day they start making their own decisions and you hope and pray that you have taught them all they need to know.

However for parents of children with special needs it doesn’t always work like that. From the moment Grant was born I had to start making decisions for him…not too different than any other parent however my decisions were BIG decisions and will remain that way for the rest of his life. And yes I have a husband and we talk about things but the decision always falls on me. That’s a heavy burden to bear.

It started with simple decisions. Like when his early intervention physical therapist was coming once a week and asked if I would like to increase the visits to twice a week or every week. That was an easy decision to make. I’ve had a lot of easy decisions like that but every now and then I get the big ones that have me second guessing myself and finding hope in prayer.

The first really big decision came just before Grant turned one. My husband and I had talked about Botox but never really said yes or no. Finally I decided to take him in for the initial evaluation. I walked out of there with a list of twelve different spots that the doctor wanted to shoot needles into my teeny tiny little boy. My decision was no…he’s too young.

Then I found out about a form of therapy called ABM but the closest therapist that practiced this method was in St. Louis which was three and a half hours away. I decided to send an email. We went for a free session and I decided let’s do it. The problem…. we had to make the two to three day trip once to twice a month to get this therapy done. That meant my husband had to take a couple days off work, we had to rent a car (most the time because of crappy car history), we had to book a hotel and pay for the therapy that was not covered by insurance. Now this was a time that money was tight. It was really really rough. We did that for almost a year. We saw good progress but in that time money was scarce and what we did have went towards the trips to therapy. Needless to say we lost our house and filed for bankruptcy. But it was worth it and I’d do it all again because it’s better than wondering what if my entire life.

At almost a year we found out about a therapist that practiced the same form of therapy that had just moved to our area. Thank goodness! I decided to stop our trips to St. Louis and stay home. Again we saw progress but it got to be just too hard for various reasons. So I decided to end that journey. By this time he was almost two and I decided it was time for Botox.

For almost three years Grant got Botox injections every three months. At first it was amazing and did amazing things for his body. Then it was like we hit a wall and progress stopped. That’s when I expressed my concerns with his orthopedic surgeon and told him I only wanted Grant seen for hip evaluations and wanted to stop getting botox. A few days later I received a letter stating he was letting Grant go as a patient. Did I make the right decision? I knew I did at that point.

Next big decision came when I started researching Stem Cells. After lots of research I knew again it was something we had to try. However that meant a flight to Arizona, a few days stay in a hotel, and stem cells. All of which were not cheap at all!! But I decided we were doing it! After raising $6500 (just for the treatment) with the help of our amazing support system of family and friends we were off. Best decision for sure!! So much so that we are doing it again in a couple of months!

In the last few days I’ve made another big decision regarding Grant that I don’t want to discuss quite yet but one that took a lot of research and praying about. Still not sure what this journey will hold but praying it is the right one.

So in the last almost eight years my life has been full of making these huge, possibly life changing decisions for Grant. Some of which not only affect him but our entire family and our way of living. But the decision has to be made. Sometimes these decisions cause me lots of tears and anxiety and stress but I don’t know if we don’t try. Knowing that this is how decisions will be made for the rest of his life sending a shooting pain through my heart. Knowing that I’m the sole person responsible for anything and everything Grant does is daunting. But I would make every decision and be there holding his hand and cheering him on through the entire journey because I’m his mom and he is amazing!

Moral of the story: yes decisions are hard but someone has to make them.

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!

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!