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!!

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!

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!

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!