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I’m totally going to skip over the fact that the world has been swallowed up in a pandemic. We have been quarantined and sanitized. I have loved having my kids home, but I hated how their school year ended. I’m skipping it.

This is what I want to talk about... Mommas.

Being a mom is what I was made to do. I love these boys and who they are all becoming. It’s hard. Balancing life with 4 boys is hard. I won’t lie and tell you I’m perfect in any aspect of mothering. I just do my best that day, move on, and work on it. Speaking of work—I have worked outside of the home for many years. I have also worked on being a wife and momma without having to work outside of my house. It was difficult to work when I wanted to be with my kids. It has been difficult to be home because it can be isolating. I can’t have it both ways. That’s life.

Even before Asher was diagnosed, I knew something wasn’t right. I needed to focus on him. We needed to figure out how to help him. With every appointment, there was a new issue and a million questions. Man, we felt hopeless. As a family, we decided that I would no longer teach school. Fortunately, I am blessed to have a husband that works hard. We are 100% blessed to be able to do life this way.

Ok, so it’s been 4 years of trying to seamlessly focus on Asher and my other boys. Y’all know how much running you have to do with kids. There is always somewhere to go. Mommas have many jobs. One of my jobs is driving Asher an hour to and from school  I have been doing it for years. My parents wanted to take him 2 days a week for me. From the get-go, I felt bad about it. I have guilt over tons of things and this was one of them. I felt bad because I know it really stinks to be trapped in Jonesboro all day. I felt bad because he isn’t always easy. I can’t tell you how many times I’ve said, “Let me know if y’all are getting tired of taking him.”  What did I do on my “off” days? I cleaned. Asher has some habits that require extra cleaning and damage control. I did laundry. I organized. I went to school programs and ceremonies. Sometimes I had to miss things. A couple of times I tried to go to the gym. Lol. I hate to say it, but I also recovered from Asher. He is 24/7. To have a few hours to work on my house and my mind helped a lot. What did I not do? I did not sit on my ass. Of course there were times that I sat and ate lunch in peace while watching The Real Housewives. I didn’t eat bonbons and sip Margaritas. I am definitely not opposed to any of it though. You do you.

Due to certain circumstances, I’m back to taking him 5 days a week. It’s going to be ok. It will be easier when all of the kids are back in school. What’s not ok is the fact that a real-life human being said that I “don’t even work.”  Yes, that person is still alive and I’m not in prison. It actually happened a few weeks ago. I wondered why I kept going back to it. I know it’s because I didn’t say what I really wanted to. I didn’t respond, and it has nagged at me. It did make me think about it though. Have you ever worried about your child? Have you ever worried about if your child will speak? use a toilet? dress himself? live with you forever? be healthy? That’s work.

If you’ve had any of these worries, you should be able to empathize with me. I’m not mad at the person. It’s just ignorance. It’s selfish thinking.

Y’all know I love to ramble  Hopefully, ya get me.

My boss

               

My Head Hurts

He doesn’t know. Asher doesn’t know that today was his last day at school before beginning a new one Monday. He doesn’t know that the routine he’s had since he was 2, is changing. He doesn’t know that all of the hugs and kisses from his teachers and therapists today are the last ones from them. See, he doesn’t know because he doesn’t understand. It’s so upsetting to me. I know his heart will feel it.

There are no hard feelings about his school closing. I am so happy for his teacher and the exciting things coming up for her family. Life changes for people. It’s just difficult when it changes for Asher. We finally had everything in order and we were cruising along. Change for him makes me nervous.  There is so much to worry about. When things like this happen, the fact that he is nonverbal and can’t express himself, scares me. Believe it or not, I want him to tattle. I want to hear the good stuff, but I’m always concerned about the bad stuff.

We found a new school for him. We visited. Everyone was nice and knowledgeable. He’s going to love this school in the country. He’ll love playing outside. I’m curious to see how he reacts to chickens. It had a homey feeling- which we loved. We asked tons of questions and I feel comfortable that he’s going to do great. BUT- so much swirls around in this momma’s head. This gets me in trouble. I think about things that are beyond my control.  He won’t be able to tell me that’s he’s nervous. He won’t understand that I am. Will he think I’m leaving and not coming back? All of my kids have gone to daycare, preschool, and started school. I can’t even explain how different this is. It’s just a lot.

Anyway, this is a messy little post. My mind always goes to a dark place when dealing with the unknown. Leave it to me to not focus on all of the new friends he’ll make. He’ll have amazing therapists and make tons of progress. He’ll have a smile when I pick him up. I ALMOST know all of this. I give myself a headache. Ugh, I’m dramatic.

Say a prayer for all of the good things Asher deserves. Say a prayer for his nervous parents.

I asked in my prayer journal for us to fall in love with the Lighthouse Center for Autism. 

So far, so good. 

Heaven Bound

I have 4 children. We are a Christian family. I’ll be the first to admit that my parents have provided my boys with the majority of their biblical education. Since the boys were little, they took them to church early for Sunday school. They took them on Wednesdays. When we moved, they started their own church service for the family to attend. They have bible study for the grandkids and neighborhood kids on Wednesdays at their home. I remember growing up and it was the same way for my grandparents. We’d stay the night at their house and go to church with them Sunday morning. I don’t think I ever stepped foot in their house without my Grandma giving me a mini lesson on how to live, treat others, and serve the Lord. Sometimes I think it’s easier for grandparents to focus on providing a Christian foundation because they’ve grown older and see the importance of it.

Each of my boys has made the decision to be baptized. That’s important in our family. As a momma, it’s the proudest moment. In a way, it’s a sense of relief. Every other aspect of parenting is easier because you know that your kids are covered. What about Asher? Yes, he is a child and he wouldn’t be held accountable for sins at this age. He’s going to get older. As of right now, he won’t have the capability to make a decision for Christ. Now, we all know that God has the power to answer prayers. We’re not going to stop praying for Asher to progress and communicate. If Asher never gets to the point of understanding, he’ll be heaven bound. He won’t have the consciousness to reject God’s love.

I’ve struggled with the “why.”  Why Asher?  Why our family? Why not progress or healing? The more I read, the more I understand. God uses Asher for his glory. He is here for a reason and he was created exactly the way God planned. I looked up specific examples and this is what I found “When the disciples wondered about the man born blind, Jesus told them ‘This happened so that the works of God might be displayed in him.’ (John 9:3)” God must really think a lot of Asher. He is using him as a vessel to teach us patience, kindness, and faith. 

We believe in the power of prayer. There is no doubt that God can make miracles happen. We will not stop praying for Asher. My heart is a little more at ease because I know that when we all meet in heaven, God promises that Asher will be healed. “Then the blind people will see again, and the deaf will hear. Crippled people will jump like the deer, and those who can’t talk now will shout with joy (Isaiah 35 5,6). I can’t wait to hear what Asher will say. 

Zoom In, Not Out

I’m really proud of Asher. He is an amazing little boy. He has so much to overcome everyday. I often get frustrated at his progress. I focus more on the big picture (potty training, talking, ) instead of celebrating all of the little things. This summer was rough. Apparently, we didn’t realize that he had outgrown his prescribed dosage of medicine until we were all overwhelmed and miserable. We didn’t take into consideration that Asher had grown. Randy and I were just trying to survive every minute with a child that was unsettled. He moved constantly. He couldn’t focus. He destroyed things. I felt like he wasn’t even taking medication. With a visit to his developmental pediatrician, we saw that Asher had grown. He weighed 53 lbs and was 4 feet tall!  A few adjustments to his meds were made and Asher is a new child.

Let’s talk about the little picture. You know, the things that you wouldn’t normally notice in a neurotypical child. Asher started Buddy Kickball. His buddy happens to be his brother, Jackson. In the first few games, Jack would get Asher’s leg and make him kick the ball. They ran the bases and Asher usually melted down by the end of the game. Now, Asher stands at the plate and kicks the ball all by himself. He is not melting down. I get so emotional at these games. I’m so excited for him. Progress.

Asher’s therapist told me yesterday that he sat for 10 minutes and worked towards completing his goal. He also sat while a story was being read. This is all big news, y’all. He’s a busy, busy boy with a mind that never stops. It’s encouraging to know that he can slow down enough to accomplish tasks. He has also been a much better passenger on the rides to and from school. There were times I would have to stop 2 or 3 times to put his arms in his seatbelt straps or get something out of the floor that he was screaming for. I don’t feel like I need a nerve pill by the time I get home now. Progress.

Asher struggles with Sensory Processing Disorder (SPD) and OCD. I was telling someone the other day that OCD is overused by people. Just because you want your house clean or your desk in order, it doesn’t necessarily mean you SUFFER from OCD. He suffers. At the beginning of the summer, Asher got several mosquito bites. He picked at these bites all summer. We put medicine on them to keep infection away. As soon as one scabbed over, he picked it off and squeezed it until he bled. Every single day he did this. I bought him footed pjs so he couldn’t get to his legs. He wore them ALL summer.  He is still in them and it is October. He has 1 more bite to heal on his leg. His neurologist told me that he could tell that he was struggling with his OCD. The medicine is helping. Progress.

I just told his therapist, Emilee, that I’m going to stop letting him have a sippy cup. At times, there was so much chaos with him, it was just easier. Now that he is a little less impulsive, he’s going to use a cup. A regular cup. Seems simple to think that a 5 year old should be using a cup with no problem, right? Well, this is a goal. When he accomplishes it, I will celebrate instead of being hyper focused on what he’s not able to do. We’ll move on to the next mountain to overcome. It will be a mountain because nothing is easy for him. Work in Progress.

I swear, I never write a blog without bawling. I tell his story to keep myself in check. I also tell it to nudge readers a little. You should try to notice the little things in your world. Time passes quickly and you wouldn’t want to miss something spectacular while waiting or worrying about what you don’t have going for you. Use a microscope not a telescope. 💙

The infamous summer pjs

He had an appointment, so I let him wear regular clothes. 

Pride and Joy 💙💙💙💙

I recently read a blog that was similar to this one. It made me think about what I would want my boys to know. This is what I came up with.

Every single time I make a post or talk about Asher, I get so many of the same responses. “Y’all are great parents.”  “You and Randy are doing a great job with your kids,” Don’t get me wrong, I love hearing/reading that. I do have a feeling of guilt though. Am I doing what I should be doing? You boys get to see me at my ugliest. I can get caught up in Mom Mode. I want the wet towels picked up. I don’t want you to yell “What?” when I holler for you from downstairs. I want there to be bottled water in the fridge. This is all very important stuff, boys. Since our family specializes in sarcasm, I know you understand me. It is really NOT what matters.

You boys are living a special life. You are blessed to have a brother that makes you feel and think in ways that most kids don’t have to. Asher has opened up a part of your hearts that you may never have known was there- at least not at your age. I want to cry (sometimes I do) when one of you helps him without being asked or when you show grace and patience when he’s done something cringe-worthy. When you’re not looking, I am watching each of you interact with him. I can, honestly, say that I have never seen an eye roll or heard a huff from any of you when things have to be adjusted for Asher. These are some of my proudest moments. It’s not a strike thrown or a charge taken. It’s not the Honor Roll or a class award. It’s not the construction of a massive Lego set or teaching the dog to sit. IT IS your spirit and your heart.

I think about the day when you will bring home “that girl,” and she’ll fall in love with Asher. It will take the perfect one, so choose wisely. When you have your own children, you will love in ways that you never imagined. I think you will look at your kids differently because of Asher. You each are learning patience and understanding. You are also learning what it looks like when I get to the end of my rope.  You have seen my heartache and frustrations. I hope you have also seen a set of parents that will do whatever it takes to push Asher towards progress.

Each of you is different. Each of you is talented. You have interests. You have dreams. You share your smiles, heart breaks, and love with me every day. I know I have great kids. WE know we have great kids. Your parents aren’t perfect, but I know that you will never for one second doubt that our love for you is unsurpassable.

I want to thank each of you for being you. No one would blame you for being jerks about some of the situations concerning Asher. I’m beyond ecstatic that I have the best kids on the planet. I know that’s due to the combination of parents, grandparents, family, friends,  and God. ❤️

 

Just the 3 of Us

“This is how it will be when it’s just the 3 of us.”

This sentence stopped me, took my breath away, and punched me in the gut all at once. It is just a random Wednesday night. Jackson went to a rodeo/concert. Riley and Knox were at Bible study. Randy and I were home with Asher. After making us a quick sandwich, I commented that I liked this supper- no clean up. Randy didn’t even think. He just said it. “This is how it will be when it’s just the 3 of us.”  I think this kind of thing to myself. I worry and try to picture our future, but for him to say it made it real.

Asher is five. We are about to start full force potty training. I don’t want him in diapers. He’s in the biggest size of Huggies. We’ll have to do something else when he grows out of them. I’m worried that he won’t catch on. I mean, it’s going to take a long time. I know this, but what if he just doesn’t get it? It just leads to a lot of emotions for me. I’m thinking about him having a teenage babysitter. How long can I expect a girl to change this kid’s diaper?

 I was looking at his little teeth tonight. He hasn’t lost one yet. Those big teeth immediately make a kid lose that baby face. I worry that he’ll start pulling them when he gets a loose one. That’s the kind of thing he would do. He would realize how to make a tooth loose and be persistent enough to pull them. He really doesn’t respond to pain.

He still sleeps with us. Right. In. The. Middle. I don’t even know how we could ever transition him to his own room. A lot would have to get better in order for that to be a possibility.

I’m seeing pictures on Facebook of kids his age starting preschool or even kindergarten. THIS!

Yes, I’ve pictured him grown. Of course he’ll be gorgeous, but he’ll also be big. I pray that he’ll be a much calmer version of himself. Now I’m envisioning Randy and I with the boys grown. Asher is at home with us. He will always be here.

I know that Jackson’s college visit today put me in an emotional state of mind. I want him to stay, and I know I have a child that will never go. That’s tough, y’all.

Nervous, Sad, Hopeful, Happy...

** If you didn’t read my last blog, you may need to catch up.

This Monday, Asher officially became a patient at St. Jude. The anticipation of the appointment  seemed to nag at me for weeks. It wasn’t just because of him, it was because of the atmosphere I knew we’d be a part of. There were going to be sick kids. There were going to be obviously sick kids. It’s emotional. I can’t watch the commercials. We’ve given to St. Jude for years, but to be there was going to be hard and I knew it.

As I expected, they were very organized and efficient. As I expected, Asher was overwhelmed. The waiting area is wide open. There are tons of people sitting, standing, and walking. There are big windows with lots of light. There are murals and bright colors. There are paintings and fish tanks and stuff hanging from the ceiling. It was just too much for him. We left Randy in an office to fill out paperwork. It was crowded and Asher was starting to fuss. We went back out to the front. He started to cry. He never cries. He didn’t want me to pull him in the wagon. He wanted me to hold him and get him out of there. I found myself carrying him. He was inconsolable. I looked around at all of the parents with their kids. Some were babies. Some were teens. Some were sleeping under blankets. Some were watching movies on their iPads. The parents looked tired. Everyone was almost in a daze. I know that those parents have worried themselves into that condition. Can you imagine how strong they all are though? (Keep them in your prayers)

I went to one of the ladies that checked us in. I explained our situation and asked if there was a smaller room we could wait in. I really didn’t want to be a burden, but he was really crying at this point. So was I. About the time she gets on the phone to make arrangements, Randy comes out of the office. The look on his face...poor thing. He comes out and we’re both crying.

Once we went back for the exam, everything was fine. Asher calmed down. We learned to call the whole gene mutation/syndrome - PTEN. They said it’s just easier that way. With PTEN, there is a risk of children developing thyroid cancer. They become concerned around the age of 10, but they begin doing ultrasounds of the thyroid at 6. So, Asher will begin his yearly visit to St. Jude next year for his ultrasound. The lipomas on his body won’t have to be checked unless we feel like they have grown. That’s not at all what we thought we were going to hear.  As a precaution, our family will be tested just to make certain that this is a new mutation and we don’t have PTEN.  That is also new and something else for me to lose hair over.

That’s really it. I know we had many prayers being said for an uneventful visit and for encouraging news. I just wanted to update everyone on what we found out.

I’ve focused the last 3 years on “fixing” Asher. I really have. As much as I say that it’s all accepted and we’re all good, the truth is that it is something we live with every day. And it’s hard. You know what though? He is so dang happy. It takes nothing more than a day outside, a paper to tear, bath water to splash, or a video of Mickey Mouse to light up his world.

 I was reading about the drowning of country singer, Granger Smith’s son. His son was 3. He said, “What if we were all given 1,000 days on this earth and you could live these days barefoot, your red hair flying back, on your go kart, on your tractor full speed ahead? If you could do that with your family around you with no real cares in the world...that’s a good way to live.”
This is what Asher does. This is who he is. If you aren’t living your life like Asher, maybe you should be.