My Parents Bought A Pop-Up

We used to go camping all the time when we were kids. So many summers were spent in a tent or in the pop-up trailer we had that my mom decorated and made more amazing than any pop-up I’d ever seen. Camping was our jam! And we loved it.

There were so many memories made sitting around a campfire, sleeping in a tent, riding rollerblades around the campground and watching my dad wipe out, making cookies over a campfire, having to evacuate to a Dairy Queen while a bad, bad storm rolled through. Those are all memories we still talk about today.

But I have a confession…my kids have never been camping!! I cannot believe that I have a ten year old, nine year old and three year old and they have never been camping. One of my absolute most favorite things to do as a kid and I haven’t made those memories with them.

I plan on changing that because my parents bought a pop-up!! Now I have to admit I was pretty excited when I found out. And even though it isn’t exactly like the one we had it still brought back so many memories. But to see my kids walk into this pop-up and just make it their home made me realize that it’s time.

Matthew was blown away by the fact that there was a stove in it and he just kept showing all the things he had no idea were in a pop-up…like how you can zip the windows up when it rains. Gracie was immediately obsessed with the beds. She had to go into Ma and Pa’s house and get some toys. All three kids sat on/by the bed and played with toys just like my brothers and I did when we were little. It was so awesome to watch.

So now we must go camping!! It might start out just in the yard down at the lake but that start is better than nothing at all.

Moral of the story: Make the memories. Stop coming up with excuses or putting it off and just go out and make the memories!

High Five to Special Needs Moms

Yea that’s right! I mean you!

To you, the mom who just took your kiddo (or kiddos) to the store and barely survived the breakdowns of your special needs kid. You, who made it through the rude stares and tisks from those “perfect” moms who have no clue what your day looks like. High five to you!!

To you, the mom whose child has never said a word. You, the mom who has never heard “Mom” or “I love you” or “thank you, Mom.” To you, the mom who, even though your child can’t speak, you know exactly what he’s saying, or needs, or wants. To the mom who has a thousand conversations with your nonverbal child. High five to you!!

To you, the mom who sits here and reads this as your eyes get heavy and you want so badly to sleep but you know that’s not happening yet again tonight. To the mom who is running on so little sleep that your body is literally exhausted. To the mom who doesn’t know if you can make it through another sleepless night but yet you continue to night after night. High five to you!!

To you, the mom who has become a taxi and whose whole life is consumed with driving to therapy and doctors appointments. High five to you!!

To you, the mom who spends more time on the phone than any human should have to. Calling insurance to fight for that piece of equipment that your child DOES need to have a good quality of life. To you, the mom who has to call and schedule all those therapy and doctors appointments. Who has to repeat your child’s information and life story so many times you could say it in your sleep. High five to you!!

To you, the mom who is sitting in a hospital room, in a stiff hospital chair beside your child’s bed as you pray for God to protect your baby!! You, the mom who doesn’t know what the next moment will bring. You, the mom who the hospital staff knows by name. High five to you!!

To you, the mom who just watched your child accomplish a HUGE milestone. Whose smile is so big people would think you won the lottery. To you, the mom who is so filled with pride right now that you literally feel like you might explode! High five to you!!

To you, the mom who is about to enter yet another IEP meeting only to be beat up and torn down hearing everything your child can’t do. You, the mom who gets in the car after the meeting and the tears fall. You, the mom who has to fight to get the services your child needs from the school. High five to you!!

To you, the mom who stands in the shower and let’s the tears fall and silently cries because this life is hard. This life isn’t fair for your child. This life is a constant uphill struggle. It’s a marathon that doesn’t end. High five to you!!

Moral of the story: This special needs mom life is not easy. Most days it’s hard…very hard! But you’re not in this alone! We’ve all got this! Some days it may not feel like it. Some days It may feel like the world is falling down around us. But there are those days that we feel like we are walking on the clouds. Use those days to push through the tough ones. Because when life knocks us down to our knees we always come out of it standing tall! So high five to that!!

Another Successful Party

I must confess, I absolutely go crazy over birthdays. My kids birthday’s are probably more exciting to me than to them. I love getting to celebrate the day they came into my life and changed my world!

So yesterday was no different when we came together to celebrate Grant turning 9! First of all, I do not even know how nine years has flown by since Grant came into our lives and rocked our world. But it has. My littlest boy is getting ready to enter his last year in single digits.

When I was talking to him about where to have his party I knew what his choice would be. He chose a roller skating party. He did this for his party last year too and he just loves it. We rent out the rink so it’s just his party there. He gets to get out in his chair and roll around and feel like he’s just like everyone else. It’s the absolute best!

This year I had a week from the time I had to schedule his party to party day. I was really worried that his friends wouldn’t be able to make it and was really concerned when I had no RSVP’s except for those that I was able to invite on Facebook but I figured it didn’t matter we would have fun anyway.

Of course I was worried for nothing!! Some of his absolute best friends showed up and he had a blast just like I knew he would. He was all smiles as friends skated by him smiling and laughing right along with him. He had kids surround him as he sat waiting to eat cake. His smile radiated as we all sang Happy Birthday and the smile on his face when he opened presents was priceless.

One of my biggest fears when I found out he would have CP and especially as the realization set in that he wouldn’t talk was would he have friends. I never have to worry about that because look at this group that showed up to celebrate him!!

He opened presents of Fortnite characters, Hot Wheels cars, and a super big pack of Reese’s Peanut Butter Cups which are his favorite. His friends know him so well, a couple of them got him cars with buttons on top that he can push himself! They were all so incredibly thoughtful and so excited to watch him open their gift! He also got several gift cards and he’s so excited to go buy Xbox games that he can play with his adapted controller.

I do have to share this super special card from his best friend. I knew these two were close and I even told my mom that I really think they are best friends. This sweet card from his best friend, Jenna, confirmed that!

I always like to take time at each kiddos party to take a look around and soak it in. Last night, as I did that, my heart was so full of pride and love!!

Moral of the story: Never underestimate children and their ability to see past the disability and accept exceptional children for who they are…even to the point of being best friends!

Have a blessed day!

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!

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!