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!

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!

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!

Not Again! {FREE Printable Potty Chart}

So do you remember me talking about potty training? Yes the dreaded potty training that takes everything out of you but makes you oh so proud! Well…we are at it…again!

Yep you read that right. Grace was fully potty trained…well during the day, I was not even going to begin the night time craziness! Then she wasn’t. Okay so maybe it didn’t quite happen like that. The day after Christmas she got super sick with what I am guessing was a round of the flu. It was way way to cold to risk getting her out just to be tested so we stayed home and warm. She did great and had hardly any accidents even though she spent almost two weeks laying on the couch. Then she got better and the flu was gone and all of a sudden she forgot how to pee in the potty!!

What the heck!!!

So it didn’t start out too bad and I thought that maybe because she was feeling better and wanting to play she just didn’t want to stop and go to the bathroom…understandable. Then it just got worse and worse. She was not peeing in the potty at all and having accident after accident after accident. I wasn’t going to break so I kept her in undies and kept at it.

Then she started complaining about her tummy hurting…well kiddo you have to eat if you don’t want your stomach to hurt. Then it was her “Pee Pee” (okay we have boys and we’ve just always called it that. No we are not politically correct or whatever you want to call it but you do you and we will do us. Okay okay back to the story! Uh no…it has the be a UTI…right? Took her to the doctor this week and thankfully she went pee on the potty while we were there. Got a good sample and the results…negative! UGH! She had some redness causing irritation and then our amazing nurse practitioner…seriously we love her…said I would have to potty train all over again!!

NNNNNNNOOOOOOOOO!!!!!!

Deep breath! Here we go!

So last time candy did the trick but that was so last year…see what I did there 🙂

So I decided it was time for a potty chart and bucket of prizes. I took my inspiration from this potty chart from Richly Blessed and made my own little changes. My printable potty charts are available at the end. Anyway…off to Target we go. The bucket is filled and we have a long talk.

Guess what?! She’s done amazing!!!! For the last 2 days she’s only had 2 accidents and gone potty so many times! I’m so incredibly proud of her…again…and she’s so proud of herself! She has to show everyone her potty chart with all her stickers. We took it to my parents house last night and she was looking all over for Ma. “Ma where are you? Me show you my stickers.” Ugh too precious!

So I think we might be good to go…one can only hope!

Moral of the story: even though you might fail and want to give up…keep pushing forward!

Have a blessed day!

minnie potty chartTo get the Minnie Mouse Free Potty Chart Printable click here

Mickey potty chart

To get the Mickey Mouse Free Potty Chart Printable click here