My NICU Miracles

Did you know that September is NICU Awareness Month?

That’s okay if you didn’t. It’s one of those things that if you’ve never had a preemie or baby that had to spend time in the NICU then you wouldn’t know. And that’s okay. But I am one of those people that knows about NICU Awareness Month because I have two NICU miracles.

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My first experience with the NICU came when I had Grant 8 and a half years ago. He came 4 weeks early at 36 weeks. He weighed 5lbs 13oz and spent 18 days in the NICU. Things were a tad different in our situation with Grant because as I have talked about before with all the complications I had with my pregnancy with him and knowing before he was even born that he would most likely have Cerebral Palsy…I also knew that he would be born early I just didn’t know how early. Him having to spend time in the NICU was also pretty much a given. It was all dependent on when he would need his last transfusion and whether it was better to transfuse or go ahead and deliver. At 36 weeks the decision was made to deliver. So I headed in for a C-section. I heard the sweetest little cry as they flashed him over the curtain then quickly whisked him away. The next 18 days he spent trying to overcome swallowing issues which was the first obstacle of his Cerebral Palsy.

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My second NICU experience was almost 3 years ago when my daughter decided to “grace” us with her presence 10 weeks and 1 day early!! After a week of being in the process of active labor she came within a couple of hours. I was one push away from having to push her out naturally as opposed to a c-section. I didn’t even get to see her beautiful face before they whisked her away. She surprised us at 29 weeks 6 days weighing 3lbs 4 oz. She was a tiny little bitty ball of fire and strength from day one. She was my little Rockstar! I always said that she was too excited to meet her brothers. She spent a very long 46 days in the NICU which included a NICU transfer to a different hospital. She did amazing and spent most of her time being a feeder and grower. Her biggest struggle was learning to drink from a bottle. Once she got that she was good to go!

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To this day the hardest couple of days of my life was when I had to walk out of that hospital for the first time leaving behind a huge piece of my heart to be taken care of by complete strangers. I remember the day we left with Grant I was waiting for my husband to pull the car up. There I sat with my bags and flowers and balloons but no baby. I sat there and watched a couple get off the elevator all smiles with their baby in the car seat. They were beaming with happiness as tears rolled down my face. It seemed so unfair.

Every day after that when I would go visit my baby in the hospital broke my heart just as much. It is the strangest feeling for it to be your child but having to follow the rules of someone else when it came to caring for them. And it’s just so unnatural to sit in a room where your walls and privacy are curtains, hearing beeping from not only your baby’s machines but all the other baby’s also and spend quality time with your brand new baby. Your bonding time was spent being interrupted by asking if you were okay, if you needed anything, if you were going to pump. Some days I just wanted to scream “I JUST WANT YOU TO LEAVE ME ALONE!!!”

And then it was time to leave again. I remember with Gracie everyday as I laid her back in her isolette and gave her a kiss and promised her I would see her tomorrow as the tears would stream down my face. Every day for 46 days I left the hospital in tears. Now don’t get me wrong…even with the pain of having to walk away everyday I knew that they were both in the best care they could possibly be in. I knew that the amazing NICU nurses and doctors were taking care of my babies better than I could’ve at the time. They knew things that even as a seasoned mom I didn’t know enough to help. But that didn’t hurt the pain!

Today they are a happy and healthy 8 year old and 2 year old (I refuse to say almost three because I still get 20 more days of her being two!) You would never know by looking at these two happy faces that their journey’s started out so rough.

Moral of the Story: I give a huge high five to any NICU moms and dads (and even NICU siblings because their lives are also turned upside down on this journey) out there. Whether it’s been decades since your NICU miracle or just yesterday. The journey is a hard one no matter how long or short and it’s a journey that a parent never forgets!

(If you are a NICU parent let me know in the comments!! I absolutely love hearing stories of NICU babies!!)

Have a blessed day!

Tears in Walmart

Every once in awhile something happens in your life…a moment, an interaction…that makes you smile (an maybe bring tears to your eyes as you are walking through Walmart).

I was going to get on here and post a blog about how unfair life can be for a special needs child. I was all ready to talk about how Matthew is at the lake for a few days with my parents but Grant didn’t get to go. I was going to whine a little about how Grant deals with enough…but then something happened.

As we were walking through Walmart, Ryan was pushing Grant in his chair and I was following pushing Grace in the cart. Going down a main aisle Ryan cut across and I waited for a younger guy to pass first then I followed. We were standing at the phone chargers and this same young guy came up to us. Thinking we were in his way, Ryan and I both kind of parted the way. That’s when he bent down to Grant.

This is where the watery eyes started.

He bent down to Grant and talked to him. He didn’t talk to Ryan and he didn’t talk to me…he talked TO Grant. And he waited for Grant to answer him. He asked if Grant liked toys to which he got a huge smile and little nod yes. Then he asked what kind of toys. Do you like cool cars he asked Grant. Again big smile and nod as Grant looked at me like how did he know. He then looked up and asked me “Does he have Cerebral Palsy?” It always throws me when people ask that. I told him yes he does and he told us his twin brother has Cerebral Palsy. He said they are 23 years old. Then again he started talking to Grant. He handed him a $20 bill and told him to go buy him a cool car. Then he waited there for Grant to grab the money.

I’m not sure how I choked back the lump in my throat to thank him for being so kind. As he walked away and I bent down to Grant I had to wipe a tear away.

It’s those moments that make you take a step back and see the world…in that moment…as nothing but good. His kindness towards Grant and the way he spoke to Grant like a person was beyond words. There was a connection between the two of them. They understood each other and that was so amazing to witness!

Oh yes and Grant picked out an awesome car!! He was so excited to walk through the toys and search for something he wanted. His car lights up and makes noise and he can do it all by himself.

Moral of the story: Never take for granted the fact that there are still amazing people in the world. And when you get wrapped up in a moment that takes your breath away…soak it in!

Have a blessed day!

There’s No Greater Love…

…then that of a special needs sibling!

One of my greatest joys is watching my oldest and youngest with Grant. I love the look of love and adoration in their eyes as they interact. I truly believe there is no greater love.

Matthew was only 17 months old when Grant was born. He’s been there through every triumph, every mountain, every tear and every smile. He’s been there for every doctors appointment, every bad day, every great day, every small feat…He’s experienced it all with a smile on his face. He’s never once complained. He’s never once acted like Grant is a burden. He’s never once acted upset over the amount of time Grant takes from him. He is truly Grant’s biggest fan and always the first to be excited over something he has accomplished. Grant being Grant is all he’s ever known. And he is truly amazing with him and the love that Grant shows for Matthew is indescribable. I’ve said so many times that I wish Grant looked at me with half as much love and adoration that he shows when he looks at Matthew.

And Gracie…oh my she’s Grant’s little Momma! She’s always making sure he’s okay. She’s worried when he cries. She laughs when he’s silly. She loves on him when he needs it. I can always count on her sharing her food or drink with him. She had a piece of cheese the other day and I look over and she’s holding his head so gently saying “here go Gant. Take a bite. It good.” She’s always asking “where my Gant?” One day we had to drop the boys off at school and it messed Grant’s day up so he was crying. I got back in the car and she said “My Gant cry, Mom” “where my Gant go?” She loves him fiercely and I love that he always has her to look after him.

Life as a special needs sibling is not a “typical” life. You see things you shouldn’t have to see. Like, for instance, being seven years old and watching your younger brother have a seizure…and then watching it again several more times. Having to ask your mom “Can you die from a seizure? Is Grant going to die?” It’s the worry that anything could cause it to happen again. Matthew is Grant’s protector when it comes to seizures. He is always making sure he is not doing anything or exposed to anything that will cause him to have one. 

Life as a special needs sibling is being 2 years old and watching your older brother throw up so many times over and over day after day to a point that when you play doctor you act like you have to throw up but you have to have mom take you in the kitchen and hold you “like Grant” so you can throw up.

Life as a special needs sibling means not getting to do some things just because Grant can’t. Because even though it’s 2018 there are still so many places that are not handicap friendly, wheelchair accessible or good for kids with disabilities. 

Life as a special needs sibling means being told to wait “just a minute” while your mom helps your brother with something as easy as getting a drink or eating.

Life as a special needs sibling means life isn’t always fair.

But…life as a special needs sibling means that you have a kind heart! It means that you learn compassion in a way most adults will never understand. It means that you learn to put the needs of others before your own. It means that you know a love deeper than any love and so unconditional nothing can break it because your brother loves you so truly, so madly, so deeply that it makes it all worth it.

Moral of the story: Be kind to special needs siblings. They have a life unlike any other. Most days their lives are chaotic and crazy. If you get a chance to be friends with a special needs sibling, do it! They will show you kindness you’ve never seen before. Special needs siblings are the unsung heroes. The superheroes that don’t wear capes!!

Have a blessed day!

No Straws Aren’t Good For Everyone

I’m really really torn over this! I get the reasoning behind it. Totally understand. It’s great for the environment and I’m glad to see changes being made to protect our Earth…it’s about time…

BUUUTTTT…

This is awful for Grant (along with many others with disabilities) if everywhere follows suit. You see, as you know Grant is disabled! He cannot drink from a regular cup like the majority of the population. He is working on it but he is no where near ready to take on that task. He has worked his butt off and still continues to on drinking from a plastic straw.

starbucks-cup(please refer to this article on Buzzfeed about the new Starbuck’s cups)

“So why can’t you just bring his own straws with him?”

Well here’s the thing…being a special needs parent requires a lot. I’m not talking about all the physical and mental stuff…I’m talking about all the extra baggage that has to be packed for just a simple outing like eating. So while trying to remember bibs, a fork and spoon (because he can’t eat off of plastic ones because he breaks them), wipes, and making sure we have pull-ups and a change of clothes just in case. Add to that everything we need for our two year old and that’s a lot of stuff. So what happens when I accidentally forget to pack a cup because now places don’t offer straws. Or what happens when I don’t pack the bendy straws (which by the way if I still continue to use them doesn’t that defeat the purpose?). I will tell you what happens…he doesn’t get a drink…and that is just not right!

No I know there are other alternatives to plastic straws that I could use but let me explain why they aren’t an option.

Grant cannot use stainless steel straws. When he has something hard that goes in his mouth he bites down hard. It seems like the harder the object is the harder he bites.  So I’d prefer to for him to keep his awkward looking permanent teeth that are coming in :).

But there are paper straws…those aren’t hard. You’re right…there are paper straws. But imagine this…you know when you suck and suck on a sucker and the paper stick starts coming off in your mouth? Yeah that’s what would happen if Grant used a paper straw. Instead of getting a good drink of his yummy chocolate milk he would probably gag when instead a chunk of his paper straw comes off in his mouth.

Last is the silicone straw…it’s a great fix…not hard for him to break his teeth on and not paper for him to get chunks in his mouth. The problem? He can chew them off! Yep that’s right. I don’t really want him swallowing chunks of silicone!

With plastic straws he can drink out of them really good. Like I said not perfect but he’s getting the hang of it. Usually all I have to do his hold his lips together on the straw for a sec to get him started and he goes to town. And again…if need be…yes I can pack straws to take with us…but what if I forget? Again that makes life not fair for Grant.

Moral of the story: Well I think honestly the moral of the story is that once again the special needs community is no considered and not as important as saving the earth and animals in the sea. Don’t get me wrong I love see life and the animals in it but I think my son matters more!

Have a blessed day!

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!

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!