Marian's Baptism

I talked to Pastor Stan today and he gave the official "Yes" to Mary being baptized this coming up Sunday, March 6!

We are so excited for her because she is excited! We would just love it if we could fill the pews with people who are in support of our baby girl and her decision.
So if you love Mary and could be there, please join us at North Henry Baptist Church in Stockbridge, Ga at 10:45am on March 6, 2016!

We hope to see lots and lots of happy, familiar faces! <3

(I love this silly girl!)

A Nice Day

(Mary when she was 7 years old, when all of this started for her.)

Today was very uneventful. That means we had a great day! :)

It was such a beautiful day today. It wasn't too cold and it's not yet hot, so it was perfect. The wind was blowing just lightly enough to feel great, so we rode over the dam in our neighborhood to see the lake. It's just something we all love to do to relax. We can all breathe a little better for that very short ride over the water. We're all water lovers. :) That's probably why Clara picked S.C.A.D, she knew we'd follow her and we could all live by the water. We fully intend on moving down there when she goes to college... But anyway, I'm getting off track.

I was so grateful for the beautiful day. It really helped to give me a little bit of a pick me up, and I think it did for everyone else too. I love being able to marvel at the beauty of nature, (It's why I have always wanted to be a nature photographer.), and things have been so gloomy here lately. We all needed a good day and it showed. We let Aiden play on the front porch for a little while, and Kat played on the swing set. Mary still isn't ready to go outside, and Clara is just happy to have a quiet room to play Minecraft in while the babies are outside, lol. :P Preteens. SMH

We didn't hear much complaining from Mary tonight. She is either adapting to the pain or she had a good day. We played Battleship (Me and Mary), until Aiden started climbing his dresser and opening his bedroom window. He's a mess! I had to go lay down with him and Johnnie took over game night with the girls.

I got Aiden to sleep and then broke free from his room and got to sneak in a movie with Johnnie. We watched Platoon. (I'm an Army brat, love my War movies). I wish we owned Cadence and Casualties of War. It's been years since I've seen them. Platoon was a little harder to watch than it has been in the past. lol I'm either getting older or I am somehow (re)sensitizing myself. :P

Let's Try This Again

I'm going to try to give better details about the doctor's visit yesterday. I kind of just threw a blog together real fast yesterday to tell friends and family the gist of what had happened and what had been said, etc...

So yesterday I cried a lot.

Every time I tried to tell someone about what had gone on at the physical, I cried.
I cried during the physical when the doctor tried... I'm about to cry now just trying to type this, y'all, I'm a mess... when the doctor tried to move Mary's arms and then her right wrist...and couldn't.
I lost it. I broke down. I had been holding it in for so long. And then to see that...it's all I could do; cry, sobbing right there in the room with the doctor there and all. It was bad.

I should let you know that her doctor did officially diagnose her yesterday with JRA. I'm not sure why the other doctor was hesitant to make it official. I think she was just too preoccupied, maybe? I don't know. But she has been diagnosed now....Officially.

I don't know if I have told y'all, but I am a high-strung, anxiety-riddled, panic-attack having, control freak. (In case you hadn't picked up on that already.) ;)

I am the super overprotective, have to know where they are, who they are with, what they are doing, catching them when they trip or lose their balance, heart attack having Mom. That's me. I'm that person.

I love my babies. And yes, even my 10 year old and 11 year old are my babies. Forever and always. Even when they are old women with gray hair and wrinkles themselves, they will still be my babies. And I will probably still be over-protective and somewhat a control freak over them. I can't help it. It's who I am.

So when I can not do anything to help one of them, it floors me. I am a total wreck. My mind is spinning. My heart literally feels heavy and hurting. I can barely hold a thought in line to have it make sense to me, much less to someone else. I'm all over the place. I feel like I'm desperately trying to hold my skin on my body. I am always trying to think of a way out, a way around, a way to help. I am constantly worrying about how to help them, how to get them what they need, sometimes what they want too, but that takes a backseat most of the time to their needs.

To lose control of even the simplest things for a control freak is the end of the world. Everything looks different, sounds different, tastes different, your life is affected in every aspect. It affects your temperament, your moods, how you respond to others, how you respond to your environment, everything.

But when it's something big, like the health and well being of your children. That's amplifies the downward spiral of losing control even more. It's everything I just mentioned above, x1000.

This rollercoaster is huge! And the ups and downs are many. One minute, the dirty kitchen table is setting me off and causing me to hyperventilate and the next moment I'm in the fetal position crying and screaming. Then I'm laughing with the kids and ok for a while. It's crazy. I know that. I'm not delusional about who/what I am. :P

I know that this seems silly to some of you, probably a lot of you, but this disease has stolen my child's quality of life. And for a person with high anxiety, not knowing what to expect or what may happen to her baby, is the worst thing possible. We have no idea what to expect day to day, much less week to week or month to month, year to year. It's just .....wow.

The doctor thinks that Mary's right side (the badly affected side) isn't growing along with her left side. Mary is growing fine, her height and weight are where they should be, as a whole. But when you have her stand up straight, her right side is visibly lower than her right, (Just like her older sister, Clara). So she has to have a spinal x-ray done Monday. I can't even get my mind to accept that one. With everything else, I just can't even feel anything about this right now. I have to push it away and put those feelings on hold for later.

Right now, I am focused on her wrist and her hip. She can't even walk for more than a few minutes at a time and she has to sit down. It's hurts her too bad. She can't walk long distances, like around Wal-Mart, or during school, or through a big parking lot. It even hurts for her to do too much walking around the house right now.

The doctor told us it was progressing fast. But I didn't expect it to be this fast. I am watching my baby just kind of wilt right in front of my eyes. It's too much.

I don't know if I put this in the first blog post yesterday, but I noticed that I forgot to put it here, so I'm adding it in now.. Marian failed the hearing test for her left ear 6x. So now she has to go see an Audiologist.

This is what I have found on this:
JRA and Hearing Loss (Article)

Equipment Needs

Marian's right wrist is her biggest problem other than her hip. It stays inflamed all of the time and the bones have now grown together. Meaning she can not move her wrist, it doesn't bend anymore, at all. They haven't told me if its permanent or not. I'm guessing by the way she said it and by the look on her face, that it is.

This has caused Mary problems moving herself around in her wheelchair. She really can't do it anymore without it causing her really bad pain. And it only adds to the inflammation. She really needs an electric chair. I found one online, I don't know much about this stuff, so I don't know if we could find one like it cheaper, but this is what I found...

Electric Wheelchair for Marian

If anyone knows of companies that will help with these, please let me know.
We got her wheelchair now through her insurance. It's a hand-me-down loaner that has a broken arm, and she has to give back after 10 months. It's one that she has to push herself in by turning the big wheels. It's too painful for her now. :(


I was also wondering about one of the walker things that has a seat. Her doctor wants her to walk when she can and since we never know when she will fall, that seems to be the best bet for getting her to feel confident in walking short distances again. Something like this...

Walker w/Seat for Marian



And then we found these gloves that are supposed to help...

Compression Gloves for Marian


And since her shoes hurt her foot and ankle (every pair we've tried of normal tennis shoes), we found these...

Shoes for Marian

I think since they won't touch her ankle and they provide a great support for her foot, they'd work wonders for her.


There are so many more things she needs to help her, like Good Grip Utensils, an Ergonomic Mouse for doing schoolwork on her laptop at school, a Wii to keep her active but in the safety of our livingroom where if she falls, she's one soft carpet and she has seating at her convenience, Thinsulate-lined terry cloth mitts, heating pads, moist heating pads, etc....All of these things would help her tremendously.

Doctor's Visit - Physical

So today we went in for Mary's 10 year exam and to have the doctor fill out her physical for camp. Clara has been complaining about her shoulder blades hurting and now her knee is as well, so she went in with us. They have both been having trouble sleeping at night because of hurting, so they were both pretty sleepy and delirious.

(Mary fell asleep on me, Clara got sleepy waiting too).

They took us back and got their height and weight, took their temps and did their blood pressure. Then for Mary, they did a hearing test and eye exam. Her left ear failed the test 6x. She's losing the hearing in her left ear.

The doctor came in and looked at her wrists, knees, ankle, hip, foot and shoulders. She is the FIRST  doctor in all of this time to even acknowledge that her wrist is malformed!!! The first one in almost 3 years! Incredible. I felt such a relief, because it's so noticeable but no one in the medical community has ever even said they notice it. She had a word for what's happened to Mary's wrist, but I can't remember what she said. I just asked in the support group on Facebook, and someone said it happened to them too, when they were a child, they are 32 years old now and it's still that way. That crushed my heart. For him and for my baby. I can't believe this is happening to her.

They also noticed that Mary's right side is not growing with her left side. She is a little lopsided. So she has to get x-rays.

Clara has to have bloodwork done to find out why she's hurting and if the sleepiness, fever and facial rash has anything to do with it.

Clara's Journey

We are home now and dinner is cooking, so I'm going to cut this one short. I am exhausted. So ready for a night of Fuller House with the family! :) <3

Losing It

I am so ANGRY right now!! This is crap! It's not right for them to keep doing this to my child. She may just be a number to them, another dollar sign, crappy Government insurance with no face, no real value (to them), but she is my world!! And they do not care! I could chew nails right now, y'all. I'm not even kidding. My daughter is up again tonight, hurting, crying, and in REAL physical pain!! I think the bones in her right wrist may be fusing or have already fused together! She can not bend her wrist. I tried to gently help her bend it and could feel where it feels like the bones are one!!

ONE!!!!

(It hurt like crazy just to close her fingers like they are in the picture. She wakes up crying like this just about every night now.)

I am livid.

I am wanting to hurt people.

I am in full on Momma Bear mode, y'all.

I have searched and searched and can not find a contact for this doctor's office other than a phone number. The women who answer the phones are rude, they are cold, they are emotionless....unless you make them mad. Then they definitely know anger and attitude. But they do not care about your child's story, pain or condition.

Because they don't have to wipe her tears, they don't have to try to explain to her why the medicine isn't working anymore. They aren't here looking her in her face, tears streaming down her pretty little face, helplessly trying to figure out HOW TO HELP HER!!

Oh man.

Man...

I'm shaking.

I can't see straight.

I have this heavy weight sitting right on my chest.

What do I do? I am totally helpless. I can not make them see her, y'all. I can not make them care about my daughter.

My daughter... My baby girl.
Who's hurting. Who's looking to the adults to help her. Who keeps being let down and told to wait. Who keeps being told that there is nothing we can do to make her stop hurting.

The ice doesn't work anymore. The Ibuprofen that they say to give her around the clock (From November to April, y'all), doesn't work for her anymore.

I pulled out my Mom's old, dusty heating pad, even though her Pediatrician said "No heat", I am trying it!!

She put that warm pad on her wrist and my baby fell asleep! She is sleeping.

That means she is comfortable enough to fall asleep! :) <3 <3 <3

I'm telling you, this that they are doing to her, it isn't right. No child should be forced to suffer like this. No child should have to go this long in pain like this! And they are Pediatric doctors!! They know how bad this stuff is! They know how severe it can get. I can not believe that this is going on like this. And you can call me crazy, you can call me a conspiracy theorist, I don't really care, but it's because of our insurance. I know it as surely as I'm sitting here now. She doesn't matter because she's dirt poor.

I wish we had the money to completely change up her diet. People have been telling me that diet changes could be a tremendous help. We can't afford to change things so drastically without an income. It's cheaper to eat bad. That's just a fact. We just can't do it right now.

And this y'all, is what I mean by feeling overwhelmed. Something's gotta give.

Stress, stress and more stress

I really think I need a vacation. With everything we deal with and everything that we face day after day right now, getting in the car and driving away just sounds so tempting and so very inviting.

I need to find peace... somewhere, anywhere, other than here. In the mountains or at the beach, I don't really care right now, I just want to runaway for a little while.

I feel like I am drowning in everything.

When you are already dealing with something that affects every aspect of not only your life, but of everyone in your family's lives, you just wish that anything else that is even a little bit stressful, would just pause itself.

So the baby constantly taking his diaper off and either peeing or pooping in the floor, Kathryn's behavioral issues, Clara's bad attitude and disrespect toward Johnnie and I, Clara and Mary's constant fighting and arguing, Mary and Kat's constant fighting and arguing, and Clara and Kat's constant fighting and arguing, the messes that only I know how to clean for some reason, the endless hill of laundry, the floors that are never clean enough, the dishes that never seem to be done and having to make each and every meal and snack, each and every day *deep breath* you just have to stop and sit silently, crying and wish that all of that could just slow down or pause for a minute, just so you can breathe again before you have to start on yet another task...because you are still lost in the fact that your baby is hurting and swelling and there is nothing you can do to fix her.
You can't stop the swelling. You can't make the pain go away. You can't keep your 10 year old daughter from having to use a wheelchair just to get through the school day, you can't do anything to make it so that she will get a good night's sleep, you can't make her foot not hurt when she stands up...you can't do anything. You can't protect her from herself. And you just feel so lost and overwhelmed.

All of that along with not being able to find the right job for Johnnie, our taxes getting messed up, Clara's doctor's appointments coming up, Clara now complaining that her knees are hurting her, Kathryn's very important dental appointments coming up (she is having a root canal done and two fillings), Aiden's dental appointments, Mary's doctor's appointments and dental appointments and eye exam...I am running in a rat race that I feel like I just cannot win. I'd give anything to be able to hire an assistant. Or a nanny.

Or just be able to buy them the shoes they need, the clothes they need, separate beds so Mary can sleep without being hit at night, the equipment that Mary needs... and a trip.

Oh, how we need to escape reality for a few days.

Have you ever been there? Like, it doesn't even matter that you know that the problems will go with you, and you know the problems will be there when you get back, you just feel like from where you are sitting, day in and day out, you cannot breathe there anymore, and if you could just leave and go anywhere else, you would feel better? That's how we are ALL feeling right now.

It's just too much. We need a break.

We need this....

Or we need this...

It doesn't matter where, or for how long, but we definitely need to get away from this...

A Bad Night For Mary (Video)

Painful Nightmares

Family Game Night (Video)

Family Game Night and The Sillies CLICK HERE!

Marian's Walk For A Cure 2016

Join Our Team and Walk With Us! CLICK HERE!

A Half Day

Marian came home from school today shortly after being dropped off. She was dizzy and the pain was too much for her to stay at school.
Tonight she's doing a little better. And I'm hoping that she will be able to stay the full day tomorrow. Please keep her in your thoughts.

Thanks everyone! <3

A time when things were much simpler. And she was in full health. :)

Prayers For Mary

Mary had an exceptionally bad night last night. Her wrist just will not let up on her at all. The swelling is really bad, it's hot to the touch and she is in really horrible pain. It woke her up last night, she was crying and couldn't find comfort. The Ibuprofen just isn't helping much anymore. This morning she woke up and her hip was hurting her as well. She wore her wrist brace and took her wheelchair, but she is still hurting, so please, if you are reading this, please keep my baby in your thoughts.

Please whatever you believe in, be it praying, positive energy, etc... please keep her in your thoughts, that she will have healing and that her pain will ease up and go away all together. That she will find comfort and peace of mind. Also, we are hoping that her teacher, the other staff and the students are patient and understanding today.

Thank you all. <3

My beautiful baby. Hurting but still smiling.

Not a Good Night

(Marian sleeping this morning. You can see the bags under her eyes. I know I'm going to find out this was not a restful night.)

Yesterday Mary wasn't feeling very active. She spent most of the day in the recliner on my phone. She was so excited to get KIK so she can talk to her friends. But around 11pm, she sent this to my messenger:

"I'm hurting so bad right now and me and daddy don't know were the meds are plz answer back as soon as u read this. I'm done w/ the phone and I can't walk. This is an emergency! I need you and I need you now!!!!"

I took her the Ibuprofen and put her to bed. I told her that she needed to give the phone a break sometimes, and sitting all day in the same position isn't good for her joints either.

But honestly, I was screaming inside. This isn't fair!! She's 10. 10!! She shouldn't be hurting like she's my age. I should never have to get a text like that from my child.

Now I know that I am supposed to be strong, I have to hold it together for her and for everyone else, but sometimes this is too much even for me.

She asked to spend the night with a friend of hers who she had never stayed the night with, her and her family are more like family to us, so I took her over to stay with them. Before I even left, she went over to the couch and said she needed to sit down for a minute, she was feeling a bit dizzy. I didn't think it was alarm for anything, dizziness is a norm for us some days. It comes and goes. So I just let her sit down and I sat with her for a few minutes. Then when she seemed ok, I left. Around 11pm, I got a phone call that she was very dizzy and had vomited. So I went and picked her up. Got her home, tucked her in and she went right to sleep.

I asked the support group that I'm in on Facebook (for families dealing with JA), if the dizziness was a part of the JA, and they say it can be. It can also be hormones because of her age, it can be the medicines that JA kids are on (but Mary hasn't been put on anything yet other than Ibuprofen), it can be something called POTS Disease, (We can not deal with another disease). We are still figuring our way around this one!

Right now her right shoulder is hurting her, her hip is giving her lots of trouble and her wrist is hurting her and swelling further up her arm now.  This is craziness!!

I don't know what to do for her. And as a mother, that's not ok. It's not acceptable. I am her protector. I am supposed to have the answers. I am supposed to be able to stop the pain...and I can't. No matter how much I try, I can't do anything about it. I can't even get the Rheumatologist to get her in sooner. What do you do when you can't help your child? You panic. That's what you do. You stress and you freak out inside. You worry. You lose sleep. You think about ways to help her, nonstop. And then...

You just break. I worry constantly for Mary. I just want her back to herself.

Marian's Next Blog Entry

Sorry that I have not been on for a while, we've forgotten to do the blog and check in. I am going tell about my day. I woke up of course, I did some chores, hurting very badly. I did some playing on the computer, then I did another chore it didn't really hurt me that much. Then I started typing on the blog for you guys. So that was my entire day.


(Sorry that was such a boring blog)
Thanks for reading!
~Mary

Spoke Too Soon

Mary was doing great earlier today. Right before we left for Awanas, she said she felt a bit dizzy and that she had a dizzy spell at school today but was ok enough to finish out the day. When we got to church, she walked in to Awanas, no assistance needed.

Afterward, when I went to get her, she said she wanted to run in the relay race where they tied two girls together at the ankle and they had to do two laps around the gym. I asked her many times if she was sure, and she said yes. Bad idea. I should have seen that, I know.

She got around the two laps kind of leaning on the other girl a bit, but halfway through, you could see she was hurting and forcing herself to get through it. She limped out the door a little bit and then by the time we got to the truck, she was in pain and grimacing. I asked what her pain level was and she said an "8". :(

I got her home and gave her some ibuprofen and she laid down for the night.

I hurt so bad for her. I know she just wanted to join in with her friends and it looked like so much fun, so she wanted to do it too. This breaks my heart so much. I can't do anything for her. I can't take the pain away, or I would, in a second.

I am having a difficult night with this tonight. :(

I took a video of her doing the relay race, but my phone is being mean and won't allow me to upload it.
Everyone was so happy for her and proud of her. She didn't let any of them know she was hurting. She just came right up to me afterward and gave me a look. I asked if she was ok and she didn't answer me, so I asked if she wanted to go now and she shook her head "Yes."

Today was a GREAT day!!

I stayed up cleaning pretty well into the late hours of the night last night trying to make sure the house was all clean and ready for me to get up and cook breakfast and then that it would be clean when we got home from our errands. I kept a watchful eye on Mary to see how she was sleeping, if she was whining or whimpering or if she was tossing and turning, and she wasn't! Thankfully! She slept soundly and peacefully. Unfortunately, she went to bed after 9pm, which usually leads to a grumpy morning, and today was no exception. She woke up grumpy and so did her sister. I told them they would be going to bed early tonight, but I forgot it was Wednesday night. Mary goes to Awanas on Wednesdays. They will be home after 8pm, so they have their snack, get ready for school and will be in bed after 9pm again. Ugh. We will try for early bedtime tomorrow night. :P

But she did go to school on the school bus, which means she walked, no wheelchair today! Progress! I think that's 2 days in a row. That's really good for her right now. And....she's playing, outside! She is in the backyard with her sisters, playing! And she's been out there for about an hour now. Great, great day!

A Good Day

Today Mary had a good day! She was still up last night a little bit, she was still hurting and she was still a bit weak in the belly, but she got up and she went to school and she didn't take the wheelchair! She even had P.E. today and she played at recess!! :) I am one happy, happy Mommy today.



This afternoon, she got home from school and she was so excited because it's her best friend's birthday. She even invited her sister to go over to her friend's house with her (don't miss that, hold on to it for just a moment! lol She invited Clara to go with her!). I am always up for a special moment like that! They are not always so kind to each other. But here's the real kicker...Clara agreed to go, and she was even EXCITED about going with Mary! Of course that had to be kept forever by putting it here, lol.

I got two notices today from the Board of Education about Clara and Mary's absences. Clara's unexcused absences are just me having Mommy brain and forgetting to send in her doctor's notes, but Mary's are due to her pain and her not sleeping well. Here lately, she has been hurting a lot more and she's been vomiting and sick to her stomach. I'm going to be scheduling her a doctor's appointment in the morning to see if there's anything they can do. I usually avoid these appointments because the answer is normally "Give her ibuprofen, it's all we can do until she gets in to her Rheumatologist in April." Ugh. It can get very frustrating. So I wrote the Superintendent and the Principal and her teacher, (who has been absolutely amazing through all of this. We are so thankful for Mrs. McKneely and wish that Mary could take her to every grade from now until graduation!).

Mary has also been getting these little white bumps all over her face. I don't know what these are, and I doubt that her Pediatrician is going to know, but I will still be asking about them at her next appointment. I am terrified of them leading to that darn rash all over her face again. That rash is horrible and we just spend most of our time crying when we see her like that. But all we can do is wait it out.

(If anyone hasn't seen her YouTube video and isn't aware of what rash I'm speaking of, this is the one. This is the horrible, no good, having a very bad day rash. She doesn't even look like herself and these pictures are not even as bad as it has gotten.)

I am hoping for a good night tonight. Mary tossed and turned a bit last night, Kathryn had her normal night terrors and Aiden kept me up all night with a hurting belly. Even Clara was having a difficult time sleeping last night. It must've been something in the air. Who knows? But tonight, we will all be hoping for a restful night. This Mommy needs some real sleep. It doesn't seem like that comes very easily these days, for any of us. 

A Rough Night for Mary

Yesterday, Marian was fine and then all of a sudden while we were at church, she became ill. She vomited twice and said her stomach was sick. She also let me know that the arthritis pain had moved over to her left side and was hurting her. She came home and slept most of the afternoon. Then she lay on the couch for the rest of the night, watching tv. Anything she tried to eat made her sick, but she was hungry. She was so frustrated...my poor baby. :(

Last night, she was in a lot of pain. I gave her ibuprofen, but it didn't help. She was sick to her stomach and she was hurting. So she tossed and turned all night long, whimpering and whining. She's missing yet another day of school today.

And this is why I remind people that her arthritis is not the same as what people think of when they think of arthritis. This is an auto-immune disease, not just "typical arthritic joint pain". It attacks her whole body/system. We never know what the day is going to be like, or the nights. We never know where it will hit her or what symptoms she will present with that day.

If you are reading this blog, please join me in praying for her:

Lord,
I pray that she wakes up feeling better and that her pain has subsided. That she isn't nauseous any longer and that she is back to feeling like herself. I pray that her smile will be back and that she will be able to eat and laugh with me, about anything. Please wrap her in your arms, Lord and carry her through. Heal her little body, please.
In Jesus Name I pray,

Amen.

Bring the Rain

Trying Times

Today, Mary had a bad episode. She lost all color to her face (she's olive complected), and she just looked weak in her eyes. I asked if she was ok and she said her belly was hurting. She got up to go to the restroom and came back quite a few minutes later. Then almost as soon as she sat down, she had to leave again and was gone for another few minutes. She came back and said she had vomited both times. She also told me that the pain is spreading. Her hand, wrist and hip are now hurting on her left side. :(

Now she's asleep on the couch. Her face is broken out in tiny little white bumps. That usually happens right before she starts having trouble with her arthritis. I hope that's not going to be the case this time.

She looks so comfy cozy under that big, thick, heavy blanket, doesn't she? But she's hurting today and apparently she's getting sick too. She was out of the wheelchair ALL morning though. I was very happy that she wasn't hurting to where she needed the chair. I get worried about her being in it too much, I'm terrified she won't get out of it.

Tonight I'm wanting to have family game night. When Mary's having fun and being silly, she does this thing where she speaks with a British accent and it just cracks me up. She was doing that last night, so I filmed her. We have two babies here and my parents too, so I had to keep cutting the video and starting it back again as they would come in and out, so it's kind of choppy because I don't know how to properly use our video editing software just yet, but if you can get passed that and hang for the 13+/- minutes, you can get a great idea of who Mary is.

Family Game Night :)

Today she is a bit out of character. I'm sure it's the pain but it is also that tempers are flaring, we're being impatient with each other, children are being disobedient or disrespectful, just testing their limits I suppose, things are going wrong, it just feels like a never-ending array of bad stuff right now.

I know that we can get through it if we keep our focus on each other and the positive things we have going on. I've been biting my tongue a lot. I have to just keep breathing and counting. I am new to this making a conscious effort to think, act and be better, so even though I have my moments, I keep moving forward and keep trying to change these bad habits. Johnnie is trying too and so is Mary. Clara has been on again, off again trying to do better. We just have to get Kathryn on board now. :P

Mary's Field Trip & Nights Like Tonight

(My baby girl had an in-school field trip today. Diamond Del's Mining.)

She had been looking forward to this "field trip" for weeks and today was the day! Diamond Del's Mining came to the school and taught them about rocks, minerals and gems. Then the students got to buy souvenirs from the collection. Mary brought home a bag full of stuff and a nice, new, beautiful necklace that her friend bought her so they'd have matching necklaces. I thought that was incredibly sweet. I am so happy that Mary has great friends like that. :)

Tonight, she is spending the night away with another friend of hers, Asia. This will be the second attempt. Last time didn't turn out too well. I woke up to my Mom telling me that Mary was on Facebook begging people to help her get in touch with me because she was in so much pain that she had been waking up crying in her sleep. I rushed to her friend's house at 2am and picked her up. Once I got her home, I gave her medicine and an ice pack and laid her down to sleep. She went right to sleep, but woke up still sore in the morning. So I am praying that tonight she will be ok. She took her medicine with her this time, just in case and she knows to take it easy on their stairs inside the house. So we shall see.

I wish she didn't have to worry about stuff like that. I wish she could just go back to being healthy and happy and carefree again. And yes, I am aware of how awful I sound because there are kids with much worse diseases out there. But this is my kid. And while my heart breaks for all of the children in the world who need help and need a cure, this kid is MY world. <3

Nights like tonight make me miss her terribly. Nights where she is away from me and I worry about how she's doing.

Marian's Second Post.

Hi,
It's me, Marian, again. I want to tell you about my day.

As you know I'm suffering with arthritis, but I go to school anyway, I just have to use my wheelchair. I'm hurting right now as I type this, but I am glad that I have the help of my family and friends. To add to the bad stuff happening my two best friends are moving. My friend, Bayleigh is moving in twenty-seven days and my friend, Ana is moving in March. So I need to get both of their phone numbers.

Now I am going to talk about today. First today was my friend's and my teacher's birthdays. My friend brought cupcakes. But my teacher got all the attention. :( Sorry Catey, but Happy Birthday, it's your personal holiday even if it's the same day as someone else's. That was some of the awful day (for Catey). I'm sorry she had to go through that, it was like it was only the teacher's birthday. Kids aren't nice sometimes.

I am excited for tomorrow, we are going in the trailor for the rock and mineral mining fieldtrip.

So anyway, I am asking everyone to pray for my arthritis, donate to my GoFundMe, and read my book if it gets published. It will be called "Arthritis is awful." It is about my life with arthrits and the pain.

I have a question for people... If you have Arthritis, how would you make it not hurt so much?


Thank you for reading! :)
I will blog tomorrow so keep reading my posts. :)

Wednesday Nights

For Marian, Wednesday night means that she goes to sit in the church gym, in her wheelchair, watching the healthy kids run and play and laugh and have fun. From an outsider's point of view, that must sound terribly sad and it would probably look that way if it weren't for the great big grin plastered across her face as she watches her friends play and have a good time. :) <3

My incredible ten year old daughter has a spirit that is truly inspirational. Things that would get anyone else down, she can turn into a positive. The way that she searches out the good in any bad is just a small part of what makes her such a huge blessing. She doesn't allow anything to get her down and hold her there. Of course there are moments when she is sad, that's normal for anyone going through so much. But these moments are short lived. There are the Why me's?, and the occasional sad face because she wants to do something that her body won't allow, but for the most part, if you are ever looking at her from across the room, you will see a smile on her face and excitement in her eyes. I can not even begin to tell you how much she inspires me.

Even though my baby knows that every Wednesday night Awanas meeting ends in the gym, where she will be sitting on the sidelines in her wheelchair, unable to do anything more than watch, she makes absolute certain to be there each week, unless she's too sick to go, because she wants the learning time that comes before the gym. And that is true dedication...from a ten year old, no less.

She amazes me. She inspires me. She teaches me. She reminds me to look for the silver lining that used to come so easily to me, before the bitterness set in, or the being jaded or just being broken down and weak. She shows me that life is what you make of it. You can choose to sit and wallow in your own misery and keep asking "Why me?!", or you can choose to change your perspective, keep your eyes on what's truly important and you can still be happy in whatever situation you find yourself.

Did I mention that she's only ten years old? :)

(Mary with her baby brother, Aiden. <3)

Marian's First Post

Hi I'm Marian,

I am ten years old, and I love soccer, swimming, and more sports but I'm battling JIA.
I am going to tell you about my journey with Juvenile Idiopathic Arthritis. I have had it for either two or two and a half years. Arthritis is not fun. People at my school say I'm lucky that I have a wheelchair and that I use a computer for work at school,  but I'm not, and I always say this word for word, "When you're hurting and in pain using something that helps, I'd say you're lucky that you have that to help."

But anyway, May 7th we are going to the Walk For A Cure for Arthritis.  So please donate to us children in need. Thank you if you do. I am going to tell about my journey a lot on here, so please keep checking back. I enjoy typing and blogging about this. I am only in the beginning of this Arthritis journey please help me and the others! I am writing a story/book about my JIA. I really hope that we find a cure for Arthritis. I fight it every day.

Morning Routine, Not Always So Routine

So last night, I stayed up late putting together the first video for our YouTube channel about Marian (and our family). I noticed through the night as I got up and down to check on the kids, that Mary was tossing and turning a little. This morning, she told me that her knee was hurting. She said it usually only hurts at the end of the day, but today it's already hurting in the morning. So she took the wheelchair to school today to keep the pressure off of her knee. :(

I woke them up a bit later this morning, I knew she was going to be tired after another restless night, (and I was whooped too), so we were a little late getting everyone to school. I have learned not to really sweat that though. Them missing 15 minutes of morning time isn't a big deal, and it's certainly not worth the stress or the lack of sleep for Mary.

I showed her the video I made last night for our channel and she loved it. I was so glad to have her stamp of approval on it, since it is about her. :) And I think she is excited about having her own channel. She is a YouTube fanatic. She loves all of the shows about the families and the little girls who do skits. This is going to be really good for her. I just hope people start subscribing and following her.

So anyhow, here is the video that I posted to our channel last night. I hope you watch it and maybe even subscribe to our channel. I know she would be thrilled. :)

Marian's YouTube Channel (Video 1)

Invisible Illnesses

#SickButInvisible

Since Mary has been sick, a lot of changes have taken place with her and with our family. But mostly, the changes recently have been the people around her, around us. Unfortunately, people want to be able to see your illness or your handicap, and sometimes, even if they can, it's still not enough for them because it isn't affecting them.

Marian is a 10 year old little girl with the same wants and needs of other ten years old little girls. The difference is that Mary has had a major road block put in front of her and she can't always reach out for her needs and wants. She has to have help, whether it be in the form of a wheelchair, a handicap parking permit so she doesn't have to walk long distances, special shoes, a special bracelet, a laptop to do her schoolwork, or needing someone to help her up into the car or down out of the car, whether it be someone getting her tray for her at lunch or taking it up for her when she's done, or it could be as simple as letting her sit in the front seat of the car because it's too difficult for her to get in and out of the backseat now.

People look at her funny. People who just don't know her or her situation, they judge by the fact that she looks like a normal, healthy little girl. She laughs like she's ok, she is strong in her speech, she can walk so sometimes she just stands up out of her wheelchair to walk short distances while we push it behind her waiting for her to need it. That gets lots of funny looks. I guess to someone who doesn't know, it looks like she may just be lazy or faking it to get out of doing things, but she really is sick. She really is hurt. She is just strong and hard-headed and even stubborn and she will not just give in and give up. That's a good thing. She wants to walk when she can and she wants to play when she can. She doesn't want to be confined to her chair all of the time, so she pushes herself as far as she can until she has to sit down. I encourage her to do this. I want her to be a fighter. No matter the looks she gets or the not so hushed whispers she hears behind her back. They don't know her pain, they don't know her struggles and they certainly don't know her heart or her strength.

JIA is not the same as your Grandmother's Arthritis either, (I know people think "She has arthritis, so what? I have arthritis too. I can still manage.") it's an autoimmune disease, which means her whole body is basically attacking itself. It's not just a ten year old suffering constant, crippling pain that she shouldn't even know at this age, she also deals with high fevers, body chills, not being able to walk, horrible headaches that can last for days, poor eyesight, and really awful fatigue. That's just a few things that she faces. It seems like we discover a new "perk" of this illness all the time, like there is just no end to it all. There's always something new in store for her.

Mary spends many nights crying and tossing and turning in her sleep. Her hip hurts her badly as she sleeps because she is naturally a side sleeper. Her wrist never has relief, even with medicine, it still hurts her very badly.

Things that we take for granted such as writing a short note, using a utensil to eat with, lifting a jug to pour her own tea or milk, even wiping (shhh) is extremely difficult and painful, and sometimes she just can't do it alone. She can be walking from the car to the front door, and she will be fine and then we turn around and she's on the ground. She fell, boom! just like that. Her hip gave out and she couldn't stop herself because she can't catch herself with her wrist like it is, she just has to fall. Her shoes have been squeezing her ankle and causing her pain. Even if she's in the chair all day, the shoes hurt her ankle and by the time she gets home, she's swollen and almost in tears. She just wants to take off the shoes.

The people at her school whisper when she rolls by and they point and they sometimes laugh or make comments out loud. Mary just ignores them but she still hears them, I can't imagine it doesn't bother her. Even some of the staff have been rude to her.
But who would take the word of a small child? No one around here will.

Mary has been missing a lot of school here lately. Some due to being sick, but mostly due to her being in pain all night and not getting enough rest. And then waking up still in pain. Thankfully, she has a wonderful teacher who helps keep her caught up and Marian is such a great student and so hungry to learn that she pushes herself to keep up and do her very best at all times. So Thank God above, she is not behind as of right now.

It just breaks my heart to see everything that she goes through and to know that people still think she's faking it, just using it as an excuse to get special treatment or to get out of P.E. or to get attention. I am positive that she would give up all this pain to be able to go back to P.E and I'm sure she'd give up the attention and special treatment, just to not have the pain anymore.

I wish people would think before they made judgements against another. Especially if they don't know the situation as well as they think they might.


**I took Mary and her sister, Kathryn to the lake a few evenings ago and they had a blast. She was slow walking, and she made sure we took her chair for breaks, but she did great and she got to touch the sand and the water, which made her heart happy. She found some seashells and kept them to start a collection. They both had fun and it was a much needed escape from reality for a few minutes. :)

I am hoping we can take her to the beach soon. She loves the ocean. I think she needs the getaway
from everyday life as it is right now.

Welcome! Let me tell you about Mary.

Marian is my daughter. She is 10 years old and she has been diagnosed with JRA or Juvenile Rheumatoid Arthritis by her Pediatrician. **(Update, on 04-05-2016, she was diagnosed by her Rheumatologist with JIA, possibly systemic)**

We believe that she has had it for at least 2 years that we know of. Her doctor before this one wouldn't listen to our concerns and shrugged it off as normal growing pains in an adolescent. Marian was left to deal with the constant, horrible pain on her own. We even often thought she was faking to get out of doing her chores or going to school, which was odd, because she loves school. But, we did. We didn't know any better, we were new to this and didn't even know about JA (Juvenile Arthritis).

But when she started getting rashes, swelling, spending insane amounts of time sleeping, and never stopped complaining of the pain, even when there was something she wanted to do so badly, but just couldn't bring herself to get up to do it, we knew there was a real problem. I finally got her Pediatrician that she has now to hear me and she instantly referred us to a Rheumatologist. Unfortunately, the Rheumatologist is very busy as they are the only Pediatric Rheumatologist for hundreds of miles. So her appointment was set for April 5, 2016, in late October or early November of 2015. Yeah...long time to wait for something like this.

Marian is now in a wheelchair for school and any other outings away from home. She is usually in the chair for about 2 weeks out of the month for school. Sometimes more, sometimes less, it just depends on how she is doing. Here lately, it's been a bit more. She's been in a lot of pain. Her hip and ankle are giving out more frequently too. So she is unable to hold her little body on her leg, it just drops her to the floor.

She is using a laptop at school. Her right wrist is malformed. It stays swollen and in severe pain all the time. She can only write or do any motion for a few minutes and then she has to stop.

She started getting worse over this past summer. She would go outside to play, but only for a few minutes, then she'd have to come inside for the rest of the day, lay on the couch and watch tv or sleep for anywhere from 8-12 hours. She wasn't the spunky, happy, outgoing little girl she used to be anymore. She wanted to stay right with me, not really wanting to do much but play with her dolls on the floor or draw, which she could only do in little spurts or she'd be in pain, she would listen to music and sing, or watch YouTube videos. As where she used to go outside in the mornings and only come in for lunch and then off again until the lights came on outside. She loves to run, ride bikes, play with her friends, play on her swing set or on the tire swing in the front yard. JRA has taken all of that from her. At school, she has to sit out during recess and read a book while her friends play. She can not participate in P.E. and she loved P.E., they all love Coach, he's a lot of fun.

Marian has become the little girl who comes home, does her work (if she can), and watches tv or plays quietly with her dolls on the floor. A BIG change from who she once was.

We just found out about a Summer Camp for kids with JA. She is so excited at the idea of a week at camp with kids who are just like her and know what she is experiencing firsthand. They will even have their wheelchairs with them too. :)

We have also joined up with the Arthritis Organization to do Walk For A Cure 2016 in Atlanta, Ga.

We would love for you to join our team and come out to walk for Mary and all of the others who so desperately need a cure. #TeamMarian!

Walk For A Cure Atlanta 2016

Thanks for reading. I will continue to keep this blog up to date as often as possible. Marian's struggles are daily. And I have 3 other rambunctious children, so I will up date as often as possible. If you have any questions, advice or comments, please leave them here or e-mail me at Michelleazalea@hotmail.com