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Special Needs Mom Life

As a special needs mom, we never want to talk about the hardships we experience or the exhaust we feel, because we feel guilty for complaining. I mean our children have to go through so much hardships and experience so many struggles in life, why should we complain about what we do for them?

After 20 years of being a special needs mom, I think it is good to let it out. Express your anger and fear for your child and admit the exhaustion you are enduring. We do it all because of the love we have for our child, so it is okay to feel emotions and talk about your struggles.

Here is my life as a special needs mom.

* The Future scares me

As a special needs mom, the future can be scary. What happens to our children when we get too old to care for them? What happens when we pass away? It can get a bit overwhelming when you sit and think about the future. You cannot just live day to day because planning for your child’s future is so crucial. 

* Schedules change day by day

With a special needs child you cannot always have a definite schedule for your week, or make plans for activities because our kiddos get sick so quickly. I have had to cancel so many plans because Ciara suddenly became sick. Not too mention the chance of having a social life is slim.

* We have to Fight

With a special needs child you will learn to fight for your child. You have to fight Doctors to diagnose your child, or to treat your child. You have to fight insurance companies to get equipment or medicine your child needs. You have to fight for everything all while fighting your child to do these things we fight for them to be able to do.

* Complete exhaustion

There are times I am mentally and physically exhausted I just want to curl up in bed and sleep for days. After lifting Ciara all day, sometimes my body hurts so bad and tells me I cannot to this anymore. But I get up the next day ready to do it all again.

* Sadness

I feel sad at least once a week for the life Ciara will never have. When I watch her struggle to do simple tasks, when she tells me she wants a baby one day. She will never know a normal life and I so badly want to give her everything she desires, but there is only so much I can do.

* I thank God for her

Everyday I thank God I am able to be her mother. I thank God I am able to take care of her and give her what she needs. I thank God that I was chosen to be the mother of such an amazing person.

At the end of the day there is a lot of tears, pain and exhaustion, but it is all worth it! I know every special needs mom would agree that these special people inspire us to be better and show so much strength and courage. When I am at my weakest point, all I have to do is look at Ciara’s smile and know that this is all worth it and I wouldn’t trade her for the world.

 

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self love Uncategorized

This is Me

It has recently occurred to me that I spend a lot of time and energy putting on a persona that is not me. Maybe because Social Media has become such big parts of our lives and our whole lives can be broadcast, we feel we have to keep up with the Jones’. I may purposely not post random events in my life trying to keep up this persona and only post a glamourous life, that is not glamourous.

It is actually very stressful if you think about it, trying to be someone you are not and trying to keep up with other people. It makes me a miserable person trying to live beyond my means when I am honestly okay with what I have.

So this is ME.

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*I am a little on the Trashy Side

I am a down home country girl. I have lived in the country for most of my life and still do. I do not live in a fancy housing edition and my lawn is not perfectly landscaped, heck I am lucky if my 3 acres is mowed. I  walk around bare foot most the time and love the peace and quiet of it all. I do enjoy a glass of wine on my patio with the alluring smell of cow manure from the cow lot across the street.

 

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* I am just fine with Off Brand

Somewhere along the way I started to feel as if I needed designer things. Like my purses were not good enough or my clothes, when in all honesty I am perfectly fine with a Wal-mart purse and thrift stores. Heck most my clothes growing up were from Garage Sales and I still love me some Garage Sales. I do not need designer products to make me happy, it is just material objects and I love me some good deals!

FYI, if you come to my house you will find Great Value food, if you don’t know that that is, you might not want to visit.

 

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* I don’t need the finer things in life

I really don’t understand why we kill ourselves keeping up appearances. I mean I am one of those people out there wanting things I cannot afford and pouting when I cannot afford it. But why? For instance, I have an above ground pool and avoid inviting people over because of the shame of not having an inground pool. In my neighborhood growing up if you had an above ground pool from Wal-Mart, you were the rich kid. And my pool is actually a good above ground pool, so I am doing pretty good.

I don’t have brand new appliances, most the time I find used ones and they are just fine with me. Our camper is old and so small if someone toots it will clear the whole camper out, but we worked hard to get that tiny camper and I love it!

 

horror

* I am a Horror Freak

This year I noticed after I had decorated for Fall in my house, that I had left all the scary décor out and only had pretty Fall décor. That is soo not me, but I wanted to be able to post cute, pretty Fall pictures, like everyone else was. The real me wants you to feel like you are walking into a Haunted House when you enter my home in October. I want people to wonder what is wrong with me.

For some reason I just let myself get caught up in what I thought others wanted me to be. I love horror movies (the scarier the better), Haunted Houses and scary costumes!

 

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* I am not a fan of Starbucks or Target

Okay so I may lose some of you on this one. I know there will be eye rolling and “girl please” with this one, but just saying I don’t see the obsession. I have taken my kids to Starbucks a couple of times and of coarse snapped that pic for Social Media, but really I  was not impressed with the coffee. Now at Cooks Children Hospital when you are waiting for your child to have a procedure, the Starbucks does come in handy.

And for Target, it is not nearby for me and not convenient for me to do my shopping there. I am all about Wal-Mart, it is located close to me and I know where everything is. I actually just started doing the online grocery pickup and I looove it!! So yeah, I don’t see the Target obsession.

 

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* I don’t do Fancy

I like to dress up and wear makeup, but I really am not into Fancy living. My family and I love our usual restaurants and they are not fancy. We just don’t fit in with the fancier life. I would rather have cheap costume jewelry rather than Diamonds and I will take my redneck husband in his cut off shirt over a man in a suit.

 

 

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* My Family Is Not Perfect

Most of the time I avoid posting my real family. I am not ashamed of them by no means, but I post what I think others would be impressed with.

Where I live sports are a big thing, and my son is just not that into them right now. I get aggravated with him for not wanting to play, when in reality I just want to fit in with the other moms. Not anymore, my son can be who he wants to be and I am proud of him. He does not make all A’s but he passes and I am okay with that.

My husband does not make a ton of money but he works hard for every penny he earns and he provides for us. I am completely okay with my redneck husband and whatever job he wants to work.

My daughter is special needs and even in the special needs world you can get caught up with appearance. I worry I don’t have her in enough therapy or I am not doing enough with her to help her, because other moms are doing more. But in all honesty my daughter is tired of all the therapy and me signing her up for things she is not interested in. I am going to let her decide from now on, on what she wants to do. Well maybe with a few of her life decisions, if I leave it up to her she would sit at grandma’s house everyday getting spoiled. I am proud of who she is and what she can accomplish.

So in conclusion, I have a pretty good life and I am going to start enjoying it. I am done worrying about what others have and what others may think of my not so normal life.

I am blessed to have what I have and to be who I am.

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