When it comes to my health….I ignore 99% of it. The 1%, is usually the kicker. I am down for the count until I can learn to listen to my own body.
Problem is, is that I do not have time or energy to listen to my own body because I have about 8 other bodies to be concerned about.
All that being said…my health is better because I’m learning how to take care of myself and I’m seeking guidance from our physician….when I’m there for another child 🙂 I’m sure that thrills my dr!
Then, there is Hunter….diagnosed with OPSOCLONUS MYOCLONUS SYNDROME, a 1 in 10 million condition. After, almost 2 weeks, in the hospital, last June….this diagnosis came. It has been 10 mths and we are not better then when we started. Everyday is a struggle for him. Everyday there is a new thing. Everyday, there is a new challenge.
Our dr was very kind to Hunter…he listened and responded to emails and calls. I felt comfortable that we were a team with the mutual goal of working towards getting Hunter in remission. Lately, however, I feel like it is me do my thing and he do his thing. I know that he is a good dr and I do not question the diagnosis…at all….I just want more. I want answers. I want to understand. I want it explained to me 1005 times so I will finally get it. I read through 1300 pages of hospital records. I took notes, made charts, asked questions of my dr friends and fellow OMS warriors. Yet, radio silence on our doctor’s end.
Somewhere along the line, I must have offended him. Maybe it was when I mentioned getting a second opinion because the last email I received had the words in quotes “OMS experts.” I must have ticked him off. That was not my intention. My intention was to get any and all eyes on my son…I believe that someone, somewhere, somehow, at some point read something that may be the key to his remission. If that means I keep up with a GoFundMe page and a CaringBridge page, and a Youtube page….I will.
See, the longer he is symptomatic…the more brain damage is being done and that is not acceptable to me. I want to prevent that, if I can. I want him to live a life that is full and one that he understands completely. I have 2 kids that have brain damage from FASD because of the choices their birthmother made. I don’t want another one. It hurts my heart, to the core to see him struggle to even hold a spoon or put a lego together.
I’m set to go visit another dr with Hunter this week. She is about 4.5 hrs away, so it is going to be an unimaginatively long day. We may get nowhere….then again, we might get somewhere. I have made it clear to her that I do trust our current dr. I do believe his diagnosis is current. I just want to see what other opinions/options are out there for him.
I hate to hurt feelings during this process….but this is not about me. It is not about our current dr. It is not about this lady we are meeting this week. It is all about Hunter and his future. I will do my best to move heaven and Earth and to get him the help he needs.
Please be in prayer for our trip…that it is safe and fruitful and that we will get some answers.
^^^^This is what my rainbow looked a bit like, starting in December 2017^^^^
^^^^And this is what my rainbow looks like today^^^^
I was hoping, that 2018 would be a banner year!
I was going to lose 50 lbs. (We did join WW, now we have to utilize it)
My daughter would get married, without any issues. (Success)
She would also find her dream job. (Success)
Big daddy would lose some weight. (Did join WW with me and the gym)
Hunter would go into remission.
We would get another loan paid off.
We would get ahead in our savings.
Behavior issues would be resolved.
School would go off without a hitch. (We are so close to being done, though it has been bare minimum)
Noah would take his ACT and do well.
Daddy was going to get better. (Even after another scare, this year, and still trying to get bad habits under control….he got a good report from the doctor)
Another major family issue would be resolved.
A child would be safe.
A relationship would be mended. (Well on its way)
This was gonna be the year of the Crum family.
After several years of sucking dirt…..our rainbow was reemerging.
My beginning rainbow…..that I was SO excited to see…..threw up.
Now, I have chunks of Red, Orange, Yellow, Green, Blue, Indigo, and Violet all over my floor.
When my rainbow begins to be rebuilt, the first 1/4 of it will have lots of cracks, scratches, dents, and scars.
I still hold onto hope.
I hold onto Jesus.
I hold onto the promises that He has given me in His Word.
Today, I revel in the things that are being rebuilt.
Even with those scars.
It may not look like the original rainbow, but it is still full of color and character.
Here’s to rebuilding my rainbow and starting on the second quarter of this year.
For about a year now, maybe a bit longer, I have been learning how to take care of myself for a change. It is hard. As a wife, mom, daughter, friend, believer….it is hard for a woman to stop and recharge. For me, I felt like I didn’t have time. I had to go go go go and do do do do and when I was tired….go more and do more.
One day, I was at my Lady’s house and I had things to do there. I needed to get laundry started, dishes started, do some computer clean up, get the trash, visit, and then I was going to make her dinner and bring it back and eat supper with her. Those were my favorite days.
I got there and we chatted for a moment and she looked me square in they eyes and she asked me if I had slept any the night before. She always knew when I hadn’t slept…always. I guess this day, I must have looked pretty darn bad. I just smiled and told her I was fine and that I would get some stuff started for her. I stood up and she promptly told me to sit my butt back down in my chair.
I sat down and I looked at her and I asked her what she needed. She had a since of urgency in her voice when she told me to sit down. She just smiled and said for the next 15 minutes, I was going to sit there….be quiet….and close my eyes. I laughed at her. I mean, I laughed. I told her that I was there for a visit. I wanted to visit. I wanted some wisdom and I needed to get some of her stuff done. She told me the stuff can wait and so can the visit, but I was not to speak or move.
Well, I leaned back, propped up the feet and I eyeballed the clock. I would do as she said, but if I didn’t….she’d get me, but I was not going to enjoy it and I was not going to sleep. Well, about 45 minutes and a ton of drool later…my eyes popped open. I was disoriented, I had no idea what was going on or where I was. I looked at her with this frightened look and there she was….in all her wisdom and beauty….just smiling. She asked how I felt and, frankly, I felt like a million bucks.
I could not believe I fell asleep without the aid of meds or a fan but command from the greatest human ever. It was glorious. She explained to me that she was worried about my constant moving and going and doing…that I needed to stop and regroup or I would be sick and then I would be of no help to anyone.
I took her message to heart. I began, initially, claiming Sundays as a day of rest (literally). After church, I would come upstairs…take off my makeup….change my clothes and pile up in bed. I would watch movies, play on the computer, clean my room, or nap. Bart would buy Chinese and I would not come out of my room all day long. Somedays, I just laid here…I would listen to praise music and just pray. I still do that, to this day. I used to feel guilty and now….I realize it makes me a better human.
Since that time, I have extended my self-care attitude. I, occasionally, get a massage. I get out by myself sometimes. I also head to bed about 8. I don’t go to sleep, but I take a couple of hours to be responsibility free and just reset my internal clock. There are nights when I take long, hot showers. There are also times, I do face masks or hair masks cause I enjoy it. I look at pictures, listen to music, text my friends, call my siblings or mom.
My kids can still come up here and chat, my husband comes up here to chat sometimes. I still have a few critters up here and Hunter goes to bed at 9 and his bed is close to mine, so it isn’t like I lock the door. I just sit….and be still.
I am not selfish. I am not trying to get out of my parenting/wifely duties. I stay up, more nights to play cards with my husband or those boys who have taken over my girls’ lives. I am a mom of 7. I parent about 11 kids. I mentor, love, cook for, clean for, educate and haul all of these peoples. I have 3 special needs kids…one with behavior issues, one low functioning and with learning disabilities, and then Hunter with OMS. I am tapped out by the time supper is over.
It does not make, us as women, wrong to go to our rooms and let our husbands take the reins of parenting. In fact, it makes me better. It builds relationships that might not otherwise be built if I’m always in the room. Let’s face it…my husband and I could be sitting RIGHT NEXT TO each other and every single time there is a question or a problem, the kid comes to me. Every. Single. Time.
Daddy needs to know that our penis is bunched in our new superman underwear. Daddy needs to know that the squirrels ate the wires in the car. Daddy needs to answer the bazillon questions that arise with one of our kids. Daddy needs to tell a certain boy that poop goes in the potty and not in his pants.
I’m happy to let daddy to ALL the things……….while I just chill.
When you have stood all that you can stand?
When you have had enough of doctors who think they are God?
When you are tired of your kids fighting?
When you think you are going to run down the road naked, screaming at the top of your lungs if you hear or see one more piece of craptastic news?
When you don’t have the strength to care if anyone is fed?
When you have just had it?
Here is my moment.
Instead of flipping out…..
I put on a seaweed anti-stress mask.
Did it help?
No…it made my face itch.
I am still a looker!
Am I right or am I right?
In 2015, my sweet Lady, had her first stroke. It was a tough year for her. She struggled through all the pokes, prods, tests, weakness….she just kept on keeping on. I was so proud of her for all that she was doing to fight back and to get well again. That was the year that our relationship turned, a bit. It did not turn too much because she was still my mentor, my best friend, my confidante, my person….but I became a caregiver for her.
I started simple by just doing her laundry. I did that because her washer and dryer were in the basement and she did not need to go downstairs to do it (or I didn’t want her to go downstairs). It was not and a big deal to me. There were days, or weeks, when her laundry would be a little more than I could handle in the time I was there (because we were chatting and I forgot LOL), so I would bring it to my house to wash. Again, she was my family. She is my family. I would have done anything for her.
Then it moved to “hey Lady….let me collect the garbage and get it on to the curb.” It wasn’t that she couldn’t do it….I didn’t want her to do it because she had some left sided weakness and she got out of breathe taking the heavy garbage down the steps, through the courtyard, down the driveway and then hoisting it up to the can. I wanted to serve her.
Next up was keeping up with the dishes and my, personal favorite (cause I seriously love doing this), was organizing closets, cleaning out the fridge, cleaning out her closet. We had the best time giggling over things that I would find. Oh, how I miss her.
I digress into memories.
We trudged through that first year and she announced that she wanted to send all of my family on a vacation. She had points that she could use through her Timeshare, to many for her to use or her family to use and she was going to lose them if we didn’t take some. I struggled with accepting such a gracious gift because that is a lot plus, I didn’t want to leave her for that long. She insisted and so in March of 2016, we headed to Virginia for 10 days. The only thing we “had” to do was go to some Timeshare informational meeting, but we just had to listen…it would only take 30 minutes out of our 10 days and then we could be done.
So, we planned events around that 30 minute chunk of time. No big deal. Or so we thought. This 30 minute meeting turned into 4 hrs long! 4 hrs of telling us how great timeshares were and how much money we were saving by buying into this…how the points we could get through buying a timeshare were points that would give our entire family a guaranteed vacation, even when our family was still expanding. There was the one time fee, no more, no less and we would get a free tablet. We would be able to use our points to have someone buy our groceries and have them delivered and put away in our condo of choice in our location of choice…we could even go to Europe. I mean, it *sounded* glorious and affordable.
When we sat down, with a representative, and they reviewed it all again. They brought us lunch, they were engaging and then they showed us the price. Uhm, no. Just no. Oh, wait…NO. The price tag was like $40K and we were not going to do that. Then the manager came over and told us again, the pitch. By then 2 hrs had passed. We informed them that we could not afford that. He asked what our professions were…Big Daddy said he was a P & P officer and I homeschooled the kids. He asked how much we could afford and we told him nothing. He took that info and came back and said that he would slash that price in half, we would still get everything, as promised because of our professions.
We told him that we needed to think on it and asked if we could come back later and make a decision…..he said no, the offer only stands for right that second and if we leave, it would go up to full price or even grow in price. He needed an answer immediately. I guess we were shocked when we heard we could not even leave without giving them an answer….but now, more time had passed. I was over it. Big Daddy yielded to the pressure. I didn’t give it much of a fight because I was over it. Just over it. We were so stupid.
Well, that sounded like something we could do. We yielded to the pressure of this and we took out a small equity loan to cover the cost. We thought we had it made. We finished out our vacation and we came home to tell my Lady. She just shook her head. She said, guys….did they tell you about the maintenance fee you have to pay every year that costs as much as your house taxes? Did they tell you that this? Did they tell you that? What about this? She said that her fees go up every single year and she cannot financially handle it anymore but it takes death to get out of it and since she has family, death wouldn’t even do it, her family would inherit the timeshares (even though they do not want it), and they are now responsible for the fees.
We were shocked. We tried to get out of it, but it had been past the 10 day mark, so we were stuck. We were stuck with this loan. We were stuck with these fees, so we thought we would just make the best out of it. We were not told, the amount of points we “bought” would not accommodate all of my family. We needed more points. More points meant more benefits. More benefits meant more in fees. Oh, and they don’t know who told us about the grocery thing, but unless we are platinum members, that doesn’t happen.
We were lied to about so many things. We were pressured and the fun thing is, is where the meeting was….there was no wifi and there was no tower to use my 4g to even look up this operation to read reviews on it. Convenient, huh
Be wary of timeshares. They are nearly impossible to get out of, they are vicious, they will call your family to pressure for payment, they do not stop. It never stops. You would have to hire a lawyer to get out of it. You can’t sell it because it is not worth anything and if you do sell it (that rarely happens), then you will lose money. If you stop paying, they foreclose on you and it affects your credit scores…..so you are stuck.
Please be aware and do your homework!
Do not be pressured.
Do your homework.
Don’t just “I’m over it” like I did.
Don’t buckle on the pressure.
Be wise. Don’t be stupid, like us
Luckily, we are out of it, but not without consequences.
The joys of making crap decisions….they follow you forever.
In my, personal, quest of GETTING MY GROOVE BACK, and our marital quest of getting out of debt…..it begs the question of whether we purchase a product or rent a product. Either of these options would get the job done, but what about the long run? Is this a one time use product and you will never need it again or is it a product that could, potentially, be used for several months/years?
That was my question.
In getting my groove back, I’ve been deep cleaning every facet of our home. There has not been a corner/cabinet/floor/closet that has not been touched, decluttered, or cleaned. I can only do so much in the areas of my children’s bedrooms, the stairs to my bedroom, and my bedroom floor. This carpet was here when we bought the house, 10 years ago. I’m not sure how long it had been down before we moved in. We have ranged from having 2 dogs to having 5 dogs in the house (currently we have 1 big dog and 2 little dogs). We also have 3 cats now. Luckily, the cats use their litter box, but the dogs…well, they have accidents because one of my kids cannot remember to take them out.
Most of my house has laminate flooring, so we just mop it up. The bedrooms, though, are carpeted. Add the mix of the dogs/cats, with having 4 sons and 2 daughters in the house and you can guess the floors are stained, smelly, and just flat out gross. I’ve had a couple of Bissell carpet cleaners over the years and they are pretty much a piece of crap. They have messed up within 6 mths with no promise of help from the company, so we just refused to sink more money into them. We have also had our carpets professionally done and they looked fantastic for quite a while. Over time, the stains reappeared, the dogs had accidents, kids puked or spilled food/drinks all over it and they are not disgusting again.
The other day, I texted Big Daddy, and I asked him if he would rent me a carpet cleaner so I could maintain my groove and get the carpets cleaned. He quickly texted me back and said that he would rather just spend the money, and buy one, rather than rent one. Our goal is to use any “extra” money, towards debt, not a carpet cleaner BUT I also know one key thing.
Replacing our carpet, in the bedrooms, was the last thing on our list. It is on our master “to-do” list, but it is dead last. Right now, it is doable and livable. Bart was right. We needed to invest and spend that $130 on a machine and I can clean the carpets 2 a month, or so and that will at least put a bandaid on the issues at hand. In the end, we are saving money because we are pushing back, as far as we can, spending the money to replace the carpet. When we do replace it, and we will, our goal is to already be debt free (with the exception of our house) and to save up the cash that we will need.
Sometimes, you have to bend a little, on your debt free plan. Weigh out the options of whether it is easier to buy or rent something. I am not sorry that he spent that money. I actually enjoy cleaning carpets…though those 10 yr old stains come up, there is so much satisfaction of watching it suck up all the dirt and grime LOL.
There is something profoundly wrong with me 🙂
It is Thursday of spring break week and I have done a whole lot of nothing. I’ve sat. I’ve watched Youtube. I’ve had some coke. I have cooked supper. I scratched my head. I bit off my fingernails. I’ve played cards with my kids. Just….ya know…….not a whole lot of productiveness.
I did take Hunter to the doctor because he is pulling a whole lot of THIS. I mean, there is nothing I can do about it and there is nothing a regular doctor can do about it, but I at least wanted it documented. I’ve researched mobility dogs. If you would like to help, you can head over Gofundme and I post updates and videos there.
Last night, we had quite a blow. There was some information that was shared, from a very brave girl, and we have had to deal with the knowledge of being lied too, the realizations of someone we love living two lives and basically what are we going to do, moving forward. It was hard. I just had to go to bed. I was on edge, Hunter was HORRIBLE, the kids were loud, I started snapping at everyone…all over this mess that someone else created but my family and I are in the center of the storm. Sigh.
Amongst that crap storm, I took advantage of the situation (actually, I was sitting at the table with my head in my hands, crying, eating 3 bags of fruit snacks) and I had a conversation with G. It was hard. Truth was told to her. It was hard to say and it was hard for her to hear. She is very similar to the person that has caused such chaos and her anger has controlled her for so long, she doesn’t even know what she is angry about. I will talk more about that in a future post.
Today, I got up and the sun is shining! It is cool outside and it is supposed to snow tomorrow…but today the sun is shining. I decided today was the day I was gonna get my groove back. I am awake, alert, feeling good and ready to tackle things. I had the little boys detail my van! Woot Woot. Boo folded laundry, cleaned the kitchen, watched Hunter, and just did little things that I needed done. G helped me. We started in the laundry room.
My #2 daughter is supposed to be on top of the laundry but…well….lets just say that walking into that smell cesspool of hell got my dander up cause we have not had any clean towels in quite a while.
I made some cleaner spray, with my essential oils, and I got started on cleaning the outside, the inside and the drum of my washer. Once it was done, I got the first load in and separated out the rest. G collected all the dirty laundry. I think I will end up washing all the bedding and curtains, as well….but first, we need towels. I then moved to the dryer. I cleaned all is nooks and crannies. I took the vent out and got my hand down there and pulled out a ton of lint that had fallen down there. I also pulled the dryer out, swept behind everything and worked on the tubing because it has not been drying very well.
We washed off the shelves, all the inside of the baskets, cleaned off and organized the shelves, put things where they belonged, spilled an entire bottle of ammonia…that was fun. I even cleaned out from behind the freezer where clothes get thrown, yet never get picked up. Super fun. Once I had all that done, Daniel came in and swept and mopped the floor. Laundry is still going.
I cleaned out my bill holder, got a pile ready to be put upstairs, cleaned out my desk and my junk drawer, cleaned off my mantle, the boys and G deep cleaned their room. Big Daddy is going to either rent me a carpet cleaner or he is going to buy me one. It is necessary. You cannot live in a house with 9 people, 11 sometimes, with 3 dogs and 3 cats and not need a carpet cleaner.
I also got all my essential oils out. I combined like bottles and I made a ton of cleaners, carpet deodorizer, car deodorizer, anti aging face cream, hair thickener, hair growth serum, protective spray blend, tension spray blend….so much. I am thrilled.
Tomorrow is Friday, the 6th, and I plan on tackling the innards of my kitchen and dining room. I also want to tackle the living room, the game closet, the school closet, and the toy closet. While I’m doing that, the kids will do their regular chores, just to stay on top of the little things….like the massive mounds of dirt that are everywhere or the deflated balloons that are lining my hall. Oh, wait, what about the cat food that is strung from here to high heaven or the disappearing toilet paper problem we have. When they are done with that, I will give them their marching orders.
For now, we are working in the house. When the house is done, to my liking, then I will move to organize our attic and Big Daddy will take the people who live here and organize/clean my garage and do yardwork. We need some roof work done, some gutters and landscaping done, swings hung, and such. Spring is here. Hallelujah for sunshine!