March 6, 2017March 13, 2017 by onecakecloser ♥ 0 Leave a Comment

OBPH8803[1]

It’s been a little over a year since my first seizure, and what a year it has been! Lyme and co-infection, a failed treatment, many respiratory infections, dealing with the medical field, and still the unknown. The year hasn’t been all bad though. We have shared a lot of treasured family time, we have celebrated birthdays and holidays, we have been able to see family that live far away more often, I have been able to watch a lot of television (I really like T.V.:), and most importantly God has showed His love for me in countless ways. He has mostly showed me how important I am, by using other people to bring His love to me. The way God chooses to use His people, and the way His people choose to listen, truly humbles me and brings me much comfort and joy.

After about 8 months of being ill, to the point of being bedridden for months, I started to fear the worst. I never lost my faith in God, nothing like that. But I began to drown in an ocean of fear and sadness. Fear of dying, and of dying in a painful or terrifying way. Panicked and so saddened to leave my children, especially with them being so young and still needing me as much as they do. I would imagine the confusion that Vincenzo would feel, being that he wouldn’t understand where I was, or when I was coming back. Isabella’s fragile heart becoming hardened and no one being able to love and enjoy her the way I do. Anne shutting down and never facing the bitterness she feels from me leaving her when she didn’t want me to. And it wasn’t just me afraid. Both girls were scared as well. They heard the talk, and they saw me in such a fragile place, that even they knew that this is what the end may look like. They questioned me often about my death, and would ask our friends about it when our friends helped while I was in the hospital. I did my best to ease their fears, but I could only say so much. I didn’t want to give them false hope. So, whenever they asked me if I was dying, I would tell them that I didn’t know, but that I was fighting with everything I had in me so that I could live. I took those opportunities to talk to them about God. That God didn’t do this to me, that God has been here for me through all of this, and that they can be mad at God if they need to be. But that what matters most to me, is that they remember that no one can ever love them as much as God does, not even me. That I want them to always find their way back to God, and to live how God wants them to live, no matter how hard it may be. I want my family to be reunited in Heaven, and God wants that even more than I do. We are all His children, every single one of us, and He wants to see us all home with Him where we belong.

IMG_6125[1]

A couple months back my health took the scariest turn yet. I mean, I just could not think MDSI7050[1] straight for weeks. This medical mystery still hasn’t been figured out. There is still testing that needs to be done, and doctors that I need to see. This experience has by far changed me the most than any other moment this past year. It has made me realize how badly I want to live, and to live my life for God. It has made me a different mother, a different wife, and has changed my priorities in countless ways. It has made me want to hug my family, and never let them go. It has made me want to spend every moment trying to be the person God wants me to be, and to spread as much love as I possibly can. Now, this does not mean this is what I am doing! I am weak, I often don’t feel well, I am still very much afraid, I am tired. And that is all ok, because I am a sinner. But I am working on becoming better, and stronger in my faith, and I’m doing so with a happy thankful heart. I think what has changed the most this past month and ½, is every day I have woken up and the first thing I do, is say a short prayer of thankfulness. Instead of waking up in fear, I am waking up so overcome with joy and thankfulness to have been given another day. And even better than that, a hopeful heart that I will see many days still. That maybe all of this is just a quality of life issue, and not a death sentence. I know this feeling of joy and thankfulness is a sweet gift from my Heavenly Father, and it’s a gift I currently hold most dear to my heart.

Lately I have taken on a new attitude that I most commonly hear called “Fake It Till You Make It”. I simply call it, “ignoring”. Maybe this is what people call positive thinking, though I’m not sure. I’m not seeing the future as a bright place, I’m just not allowing this past year to be my new normal. Ignoring really started by accident, it started in prayer. Anyone who knows me, knows how miserably awful I am at prayer. I try to pray, and often, but I so easily become distracted. Thirty seconds in, I realize I’m making a grocery list in my head, and I don’t even do the grocery shopping. Or it’s like when you blank out while reading a book. You realize you are 10 pages in from where you started, but you have no idea what you read, and you must start over again. Illness brought on a new determination to get better at communicating with God though, so I tried something new. I write down my prayers. Usually just a list, but sometimes, when concentrating is super difficult, I doodle my prayer instead of speak it in my thoughts. I go line by line in my list, and before you know it, I am praying (not out loud, I still haven’t conquered that). Before you knew it, my thoughts were more on the good and on others, and less on me and my problems. Then people would ask how I was, and I would either tell them I was great, thank you, or I wouldn’t answer if it felt too overwhelming. Rob and I started reading the Bible again every evening. The children and I start their school day off with the Bible. Before you knew it, my life was becoming so centered on God and God’s will, that I was running out of time to obsess on my fear and sadness.

I’m not sure where along the timeline here that this next thing happened, but slowly and surely, a new gift was showing up. Hope. I was looking forward to things again. I was trying to get out and about, if even that just means my own backyard. I have practiced driving twice (I need to give Rob ample time to emotionally recover before trying for a third time;). I even took control of my own body and decided to change my own treatment for a bit. I don’t know what the future is going to bring, but what I do know, is that I am here right now. None of this means that I don’t still get consumed by feelings of fear or sadness, but it does mean that, for now, I am ignoring that part of my life and giving attention to the part that brings joy to the Lord.

IMG_7205[1]

The point of this blog post, is to update you in a way, and to invite you to a celebration. My birthday is in July. I don’t know when I stopped caring about my birthday. Maybe when I became a mom, maybe when getting older no longer sounded like an excuse for a celebration, maybe I just got physically too tired for another birthday (maybe all three). Not this year though, this year I am celebrating my life! I am celebrating that I am here. I am celebrating that my life now has more of the meaning it should have, instead of the meaning that society wants it to have. I am celebrating that I not just care about my life, but that I again share in hopes and dreams with Rob for what is to come for us and for our family.

So, this July 23rd, we will be celebrating at the Katie & Irwin Kahn Jewish Community Center! We are renting out a room where we will have all our LuLaRoe clothes with us, birthday cake and snacks, and a day of joy and celebration. We also will be donating 10% of our gross sales to the Jewish Community Center. The JCC has been such a steadfast and loving place for our family. I hope to show them how they treat others, really makes a positive difference. Please stop by and join in on our celebration this day!

Sunday July 23rd, from 1-5, at the Katie & Irwin Kahn Jewish Community Center. 306 Flora Dr. Columbia

Please stop by, tell a friend, bring a friend! We want this day to be full of life and celebration!!

15129004_10209379243811458_4047209102058655876_o

I have no idea what tomorrow is going to bring, but I do know that today I woke up with a song of thankfulness in my heart, and for that … I am blessed.

Dear Newington United Methodist Church

December 23, 2016March 13, 2017 by onecakecloser ♥ 0 Leave a Comment

No one is prepared to be sick. I wasn’t prepared for what happened to me 10 months ago. At first, well, once I got past the terror of thinking I was going to die, I had a great attitude. But month after month, with little to no improvement, my attitude has changed. I have learned a lot about illness. When I think of someone being sick, I think mostly of that person and his or her struggle. I never stopped to really understand the whole picture. For me, the whole picture is that this illness has kept me from my children for 10 months, which is by far the most devastating side effect of this illness for me. The whole picture is my husband losing his job because I can’t drive anymore, and there is nothing we can do about that, but for him to have to drive me. The whole picture is us taking a loan for $10,000 from our bank and spending every last penny of that on doctors, maxing out every credit card, and having to borrow money (being that the majority of my medical care isn’t covered by insurance).

Before all of this began, my husband took some money from his retirement. We had planned to pay off our cars, leaving us only with the debt of our mortgage. Instead, we hope for it to make a dent in my medical bills. Problem is, because of human greed and gossip, my husband hasn’t received this money. We couldn’t even afford to buy our children’s Christmas presents this year, we had to borrow money from my parents to cover the costs of Christmas and my medication for this month. The whole picture is that because I’m sick, my immune system no longer works properly. Therefore, I am always sick on top of being sick. The whole picture is strain on a family, on a marriage, on friendships. The whole picture is complete isolation for me. I can no longer drive, I can no longer just walk about as I please, I only have one friend left that visits, I am not able to go to church because all the clapping gives me seizures. The whole picture is my children can no longer live their lives. Isabella is a very talented swimmer, and can’t swim, because I can’t drive her there. Anne is gifted with the piano, and can no longer take lessons. They all used to take classes outside of the house, as they should, but no longer can. What all of this comes down to is that my illness doesn’t just affect me, it has drastically changed what life looks like for my entire family. Yet the world keeps turning. All the people we know still get to go to church, to the zoo, to co-ops. Our friend’s children get to go to drama classes, play sports, take dance.

Part of me is joyful and so full of thankfulness to God for allowing me to live. Not everyone has it as good as I do. There are children with cancer. Young mothers given a death sentence of cancer that has gone too far. Car accidents, fires, the list goes on and on. They would give anything to have my problems. The other part of me is sad and bitter to be missing out on my children’s lives, to always be in so much pain, to watch my husband suffer at work because of my illness, to watch my children suffer because they no longer have me (none of them even ask for me anymore), to have put our family into such extreme debt.

When that bitterness starts to take over the joy, something always happens. Maybe a friend sends a care package. My brother in-law recently came to care for me and has made the world of difference for our family. Someone will stop by to spend time with my kiddos and to show them some love. God always makes sure to shine His way in when I can no longer see the light. But recently, not any of the churches that we attend here in SC (when I was healthy enough to attend), but my parents church in CT did something so big, and at a time when we needed it the most. My guess is they don’t know how much we need what they gave us, at this very moment. But they are children of God, and they chose to act as His hands and feet, and they reminded me of why I need to remember the joy and grace that God gives me, instead of the sadness and hurt that the devil wants me to see. I know I have said a lot of words, but none of these words represent the feeling I felt when Rob handed me that card. I was with your church for such a short time, but you don’t need to be there long to feel the love and connection you all have. I feel so blessed to be a part of that, even if just for a season. Though, I hope to stay in touch forever. Your church left an impression on my heart, and I didn’t need this gift to feel blessed to know you all. But your gift brought me out of a depressed state. God used you to show me that no matter where my heart and mind is, He’s still here, He’s always here. And that is a gift that no words can express my gratefulness, I can only try.

So, thank you. Obviously thank you for your very generous gift. But, thank you for more than that. Thank you for showing me the good in this world, thank you for reminding me that we haven’t been forgotten, thank you for reminding us that God is still here with me. My heart will always hold a special place for this church and the beautiful souls who attend it. I thank you, and my family thanks you. You have helped us with my medical expenses, but you have also helped our hearts. Thank you.

Happy Halloween

October 31, 2016 by onecakecloser ♥ 0 Leave a Comment

Let’s try to look into our hearts this Halloween. The child trick or treating in your neighborhood that doesn’t live near by, may live in a neighborhood that isn’t safe enough to trick or treat in. That teenager that rings your doorbell, may never have had the opportunity to trick or treat when it was “age appropriate”. The child that stops by your house too late, may have a single working mother that couldn’t get the child out early enough. The child without a costume, may have sensory sensitivities that make it too difficult to dress up. The child that is pushing and shoving may have not been taught how to “wait in line, one at a time”. Let’s help these children create fond memories that they can look back on one day, and maybe even share with children of their own. Happy Halloween!

P.S. Happy Birthday to all Halloween babies:)

Living With Lyme – Survival Mode (14)

October 24, 2016March 13, 2017 by onecakecloser ♥ 0 Leave a Comment

I know I’m sick. We all know I’m sick. Well, unless this is the first time you have read my blog, then this is for you. Guess what? I’m sick. NOW we all know I’m sick;) There are still days that I’m in shock over this though. Why is that? It’s been a little over 8 months now. No doctor, well not as of lately, has told me anything hopeful. So why can’t I just accept it and deal with it?

img_5722-e

Two days ago I was lucky enough to have a friend pick me up and take me to what is called a Super Saturday. I am waiting for my first inventory of clothing from LuLaRoe because we are going to be selling LuLaRoe, which Rob and I are super-duper excited about. I’m not sure how those who organized this event would explain it, but if I could put it in my words, which I’m about to do; I would say that it’s a time to get together to learn more about the company, about each other, and about ourselves. Its time spent so share a bit of why LuLaRoe means so much to us, as a group and as individuals. I feel very connected to this img_5786-e clothing line. Who knew I would ever feel connected to clothing? Not long ago, my idea of clothes was go to Old Navy, find a shirt you like, buy it in every color, and be done with it. But LuLaRoe came around and changed that for me. I will get more into that in another post though. It was a lovely morning and part of an afternoon. I did feel obligated to dress up, so I wore a not very fancy dress called a Julia, and I felt fabulous. I did not wear leggings or stockings, because it’s still hot here in the afternoon, and I thought that would be over doing it. Well, this room was freezing cold!!! So, I finally decided to be weird and brave and ask someone if I could buy a Sarah (a sweater) off a manikin, or I had to go. So, I asked for the img_5696-e sweater;) I thought of my father as I did it. Knowing him, he probably would have just taken it, but I at least asked first, right? So, I got to stay, and I have a new and beautiful Sarah!! When I got home, I had Rob take a couple photos of me standing in my LuLaRoe style. Then I went to bed. He woke me up for a very late dinner so I can take my medicine, so I can take my probiotics, then I went back to bed. That should be it, right? Well, it’s not. I’m still recovering from it. This is not something that should surprise me, but it still does. I’m possibly still mourning the loss of the old me, who knows. I just want to get used to it. Rob, my husband, says me getting used to it is the last thing that he wants me to do. He hopes that I always feel this way, so I can fight it and beat it. No one knows though, we will just have to wait and see. So today, I’m just a bit bummed and disappointed. Life goes on though. It’s not as fun with me not involved in it of course, but it still goes on;-)

My latest update, or I guess I should say, my latest attitude to my illness. I have seen so many more doctors. I have been to MUSC and have seen quite possibly the best neurologists SC has to offer. I have travelled back and forth to NY multiple times. We have spent 10s of thousands of dollars. Obviously, this means that we have taken out a loan and used our credit cards, which we finally got all zeroed out. I have been through awful and some scary testing. I have had pneumonia and strep b, because my immune system is so tired. I have been mistreated by many doctors, I have been told that what I have isn’t real, I have been told that I may not live through it. I don’t know much. But what I do know, is that a little over 8 months ago, when my health got out of control, the doctors were saying things such as “I am going to see you through this”, “I won’t leave your side until this is figured out”, “I know you’re scared, but I am going to hold your hand through this”. Now they are saying, “Best case scenario, you don’t get any worse”, worst case scenario, well, I refuse to type that. Now they are writing me off. Now they are losing interest I guess.
So, how do I feel about that, and better, what am I going to do about that?

img_6035-e — This is just an example of all the meds I have been on. The pile on my right is my current dosage.

Am I sad? Of course, I am. Am I frustrated? Yes, yes I am frustrated. Am I stressed? Oh, goodness, stressed, that I am. Am I depressed, enraged, and not functioning? Absolutely not. Quite the opposite actually. I feel that I have done an extradentary job at keeping up with the ping pong game that is called our medical system. I have done so well, that I have decided that I have had enough. I am making some changes, and I am making these changes against my doctor’s wills. I don’t know which of these changes are permanent or which are temporary, but changes are happening.

I will only be seeing the absolutely necessary doctors until the New Year. This list includes my Lyme Literate MD, my Cardiologist (because of the burping), my two dentists (I have awful trouble with my gums and teeth), and my PCM (this I’m not happy about though). I will be seeing no one else. You know why? Because I’m exhausted!!! Also, let’s not forget that my children have appointments too. One just had a small surgery and she has a follow up, and we have a daughter with special needs. So we are always at the doctors. I will still be at the doctor way more than I would like, but I am going to be there way less than they want me to be! Also, as for MUSC, I haven’t decided if I’m going back. But if I am, it’s not until the New Year.

I have Lyme. I got Lyme one summer 20 years ago. I’ve gone untreated for 20 years. I don’t think I have once been on an antibiotic that is used to treat Lyme in those 20 years. That can be dealt with though. It may not be easy, it definitely won’t be cheap, but it can be dealt with. But I, as many others, also got a coinfection. The Web MD definition of coinfection is: “concurrent infection of a cell or organism with two organisms”. There are some known coinfections thanks to a doctor who spent his life studying Lyme. Most of that studying was done in the basement of his own home. “The Role of Co-infections. Ticks can harbor multiple infectious organisms, which can be transmitted through the same tick bite. While Lyme disease is the most common vector-borne illness in the country, other diseases are increasingly being reported. Co-infections can be challenging to diagnose, as clinical features often overlap with many of the other tick-borne diseases, including Lyme disease. However, the importance of identifying and treating polymicrobial infections is critical in getting a patient well.” Dr. Daniel Cameron (my now former, but favorite LLMD). Here is a list of some known coinfections. Babesia, Ehrlichia, Anaplasma, Bartonella, and now Southern Tick-Associated Rash Illness, which currently has no test. So far, I don’t have any of these coinfections. Are there more coinfections? Of course, there are. Just because a group of highly paid individuals hasn’t put a name to something doesn’t mean it doesn’t exist.

Well, what happens when you have something that science doesn’t know about yet? And that thing is stopping the doctors from getting to your Lyme? These same doctors who have worn you down so much that you have pneumonia and your immune system is weakened and you’re completely exhausted? You take a break from the doctors! Why? Because they have no idea what they are talking about!!! Anyone who is giving me advise is giving me well intended guesses. So, for the first time since the first attack, I have taken matters into my own hands.

First I have switched LLMD’s. Leaving Dr. Cameron is one of the hardest things I have

img-aboutdan1 — Bye Bye Dr. Daniel Cameron. I hope to be back in his care someday.

done. Doesn’t that sound silly? One of the hardest things you have done is left one doctor to go to another? I have learned to trust this doctor with my life, and now I am leaving him. But he is in New York, and I am in South Carolina. I can’t travel alone. Rob has enough trouble with his work with having to drive me around everywhere, then having to take a week off work to get me to my doctor in New York. Also, me being away causes my children distress, we must find excellent care for our children which means flying family in, and the costs are extraordinary. So, I will be starting to see Dr. Pittman from Raleigh, NC. I’ve heard he’s great and his website makes it very clear that he has been trained by two of the best LLMD’s alive today. Problem is (there’s always a problem), he cost so much money, we are not only not saving money by seeing a doctor only three hours away by car, instead of a 17 hour train ride, we may be spending more. I’m not really sure why one person needs to cost that much to see, but he can charge what he likes, and I guess that’s the kind of person he is. Where is this money going to come from? I’m not sure, but God knows, and He’s pretty good at making things work out when they need to, so we will be ok in that area. I also have quit all but the four doctors that I have mentioned above. I am done with it all, and I need some time to be home, I need some time to be with my family, I need some time to be in conversation with God. 

Smells!! I was told no smells, and no oils. I love smells. I mean, they just make me feel so happy. They can also make me feel calm, or they can perk me up, or they can just be plain and pleasant. So smells are back. We bought one diffuser, and I love it! We are not only using it, but we are going to get more for the other bedrooms and one for downstairs. I have no idea if these smells are good or bad for my nervous system, but I’m starting to believe no one else knows that either, so good smells it is.

img_6187-e

Plexus. I was also told to stay away from any drinks, such as Beachbody’s Shakeology (which I LOVE the chocolate shake), and the Pink Drink, by my doctors. But I’m sick and tired of being so sick and tired. I’m trying all the doctor’s medicines, nothing amazing has happened yet, so I’m going to try Plexus too. I have a very dear friend who sells Plexus, but she is far away, and I am desperate. So, a new friend, who I hope becomes a very dear friend as well, came over and sat down with me for quite some time. We went over everything, we watched videos, we looked up my medications and did our best to make sure that we were in a safe place, and then we decided on a plan. I’m going to try it for two months (unless something goes very wrong), and if I feel better, I’ll keep it up, if not, I’ll keep searching. Will I Herx? Let’s hope that I don’t herx too badly. I haven’t been doing very well these past couple days, but it’s too early to tell if that’s from the Plexus or not. But if I need a little more herxing to get back on my feet, I guess that’s what I will do.

I admit that I don’t know what I’m doing. But I also admit, that no one else does either. So right now, I’ve decided to do what is best for me, for my health, for my husband, for my children, for my relationship with God, just not for our finances (or lack thereof I guess I should say;). I guess you can say that I am in survival mode. This is my life that is in question. I’m a mother, a wife, a daughter, a sister, a friend. I have a lot of reasons to live. So, if no one knows how to make that happen, preferably with the best quality possible, then I need to know that I’ve done everything I can do, because that’s just who I am and that’s what I need.

So, that’s where I’m at folks. No better. I’m not sure if I’m worse, I can’t tell yet. I’ve just recently made these changes, so I need a few more weeks to be able to tell if I feel I’m getting worse or not.

Also, yes I’m still detoxing. Though, just to throw it out there, there is no such thing as detoxing. It’s just eating and drinking right, and treating our bodies how we should. Which is super hard in today’s society (sometimes even as far as impossible). With our overly busy schedules, processed and unclean food, lack of money to buy the things we need that aren’t sold anywhere near most of us anyway. So I’m not pushing blame on anyone. I’m just saying that detoxing is just going out of your way to try to live the healthiest you can, which looks different for everyone, in my opinion at least. For me, eating healthy is protein for breakfast, a shake for lunch, whatever my loving husband cooks me for dinner, and maybe a healthy snack or two during the day if my body needs it. A lot of water, some of it with lemon in it (at room temperature, or a couple ice cubes), coffee (black), and hot tea (also black). It’s expensive, it’s really time consuming, it’s not always yummy (well, not my husbands cooking, that’s always yummy), and being that I can’t get my children onboard, I eat different meals than my family at least twice a day. Though, we are working on that. We have a child with autism who has food aversions, which have affected our other children. Life, no one said it would be easy!

I also needed to get glasses and fast, because my eyesight has taken a fast dive. Now I am able to read a bit more again, see the television (I currently am watching Dick Van Dyke on Netflix), I’m hoping to get back into cross stitching if my hands will let me, and I’ve been able to read the bible out of an actual bible, and not just the one on my phone where I can make the words really big;) All of that has been helpful.

My blog is STILL under construction. I haven’t given up on this company yet, well, yes I have, but I already paid them, so I’m sticking with it;) The blog was meant to be read in order, though I no longer think that is at all necessary. If you want to see what all this talk is about though, you are welcome to go for it.

Until we meet again.

If you like FB, here we are.

Stuck At Homeschool Week 8 – If Weeks Could Be A Roller Coaster, This One Would Be a Doozy

October 20, 2016March 13, 2017 by onecakecloser ♥ 0 Leave a Comment

Week 8, ohhhh week 8. What a week it was.

img_2498-e

We started off with having appointments to get our eyes checked. I desperately needed my glasses again, and some time ago, Anne’s doctor had said that we should have her checked too. So, we thought, let’s just throw Isabella into the mix as well. We did not get Vincenzo checked, well because, we didn’t want to. Lucky for us, we all got glasses. I do have to admit, it makes me feel a bit suspicious, and I didn’t expect it, nor did our sad and overwhelmed credit cards. My glasses cost an arm and leg because they are wide bifocals (which we expected). Isabella’s weren’t too bad, and Anne girl picked from the clearance rack. You go girl! We spent the rest of the day “blind”. We had our eyes dilated. So, we were fine, but we have one child that felt she couldn’t see properly for the rest of the week because of the drops. Yes, you read correctly, the rest of the week.

Tuesday is our Classical Conversations day. Exciting stuff, Vincenzo is now officially a student. Which is thrilling, he needs the structure and socializing, but it is a little more for me to keep up on. Not that I don’t trust his teacher and the other parents, he is in incredible hands when he’s with them. But I also am trying to avoid him looking for attention and screaming something like BOOBIES or POOP, just to try to get a rise from the teacher;) Well I made a mistake on Tuesday. When getting out of the car and getting in my chair, I dropped my ear plugs. It. Was. Awful. I not only have no idea how I made it, I basically sent Rob texts letting him know that I quit everything and I am going home and going to bed and never getting out again. To say my nervous system was at an all-time high, is being polite. But my hero of a husband, brought me my ear plugs. It was of course too late, but we stayed and the children had an amazing time. Our Classical Conversations is held at Northeast United Methodist Church aka The Pumpkin Church. So, the children, after CC, could go pick out a small pumpkin (or a large amount of large pumpkins because my children may just be slightly spoiled), and they got a story time, then they also got to learn a little about pumpkins. I swear, I am my own worst enemy sometimes. A few weeks ago, I forgot my meds, and this time my ear plugs.

Wednesday, we had friends come over. It was such great fun. My children love her and her

img_3827-e — I had to share this, because how awesome is this bag?

children, and they had a great time. I know it isn’t easy making up homeschool work in the evening, but days like Wednesday are worth it. Time to spend with friends, and I do mean for the little ones, is sometimes the best school I can think of. My friend also sells a product that I’m going to give a try. I’ll let you all know more about it once I write my next Lyme blog post. I am making changes to my care, and she can help me with that more than any of my current doctors can. I was a bit bummed, because I would have just loved to have chatted with her and gotten to know her a little better. But, my health is important, and that discussion needed to happen.

img_3825-e

We also started Life of Fred on Wednesday (a unique approach to applying math to our everyday lives). We aren’t using it to replace our math curriculum, so it’s a lot of math this year for two little girls. But as soon as I heard of it, I just had to get it. We have only completed one chapter, but it was so cute. I did buy the dolls, because I thought it would be more fun that way, and I’m glad I did, because the children loved the dolls.

Thursday morning was a sneaky one. I woke up nice and early. I “made” my bed. That means I made it, but making my bed just means throwing blankets on top of the bed to make it look as if someone attempted to make the bed look nice. I love listening to the Happier Podcast, and they suggest trying to make your bed in the morning. It’s one thing, early in the day, that you can have control over. I did that, I made my coffee in my new Keurig!!! Don’t worry, I am recycling the pods, so everyone can calm down (I know some of you were mad;). Then I sat down, in my back yard, to work on my bible study. I excitedly opened my bible to where I last left off, but, that’s not where my bible was bookmarked. I went to go fix it after feeling annoyed that one of my kiddos must have messed with my bible, but then I realized, maybe God is trying to communicate with me. So, I read it. I, may have possibly misread what God was trying to say. I was thinking that God was all “good job at fighting this thing (Lyme, coinfection, and spiritual warfare), and I’ve got your back”. I realized, not much later, that I think he was more like, “get over yourself, I was trying to tell you that things were about to get much more difficult, but I will protect you.”. It was a tiny bit of a humbling experience.

I got a phone call that changed how life looks for my middle child, not too long after my misreading of what God was telling me, and I’m a bit tired of life looking different for my middle child. My Anne girl has put up with some bad stuff. Not being given anything to drink for 8 hours in a row, locked in a room until she would take a bite of food she didn’t want to eat (while urinating on herself and crying herself to sleep in her own urine), getting beat up in a room where there were four children and 6 adults present. She was raised with one on one therapy, where she constantly had someone there manipulating her brain and telling her how to live. There are ups to this type of treatment. Such as learning to eat, so she doesn’t have to be fed by tubes in a hospital. Learning how to use a toilet. Learning how to be in a parking lot. Learning how to be around balloons, which you don’t realize how often you are around balloons until you have a child that can’t handle being around balloons. Well, they did all of that, but they also had her so robotic, that they couldn’t even see where she needed help anymore. My Anne girl didn’t know how to live in the real world, and most people couldn’t understand that. So, we graduated her, and we moved her into a company where she would get care in her day to day life. Well her day to day life wasn’t supposed to be stuck in her house. It was supposed to be out and about, around people, in challenging situations, at co-ops, playing sports, the list goes on and on (basically what we had been living before 8 months ago). But instead we all got dealt a raw deal, and we got Lyme disease instead. Anne’s summer, instead of being full of incredible therapy, was full of stress and confusion. Our return to our home state after I received a couple months of care, is not what Anne was expecting it to be. It was empty, it was lonely, it was as if she had been forgotten by those that she loves so dearly. You see, therapists have a certain way that they act with Anne, because they are professionals, and it’s a professional relationship with a client. But Anne was 2, then 3, then 4, then 5, then 6, and now just recently 7. As much as this is explained to her, all she knows is that she loves her therapists. But she also knows all too well, that one day, any day, they can just go away forever. Well, Anne’s therapists boss did some very unkind things to us, we found out about it this week, but it has been going on for some time now. Things that no longer allowed me to allow her near my family. For many complicated reasons, this changes how Anne’s therapy will look, and Anne loses one of her favorite therapists. Her feelings are hurt. She is sad, she is mad, and she is confused. But she can’t talk to anyone about that, because if she does, she will get into trouble. Which, of course isn’t true, I would love for her to talk to me about it, even yell to me about it. But not too long ago, she is right, she would have gotten in trouble. Well, I guess not trouble. But we would have written down her behavior, or her therapists would, and then it would be dealt with later. We have since stopped that type of therapy, but she’s just not ready to come out of her shell and trust us yet. So, my baby, not a statistic or some information in a file that is sent to an insurance company, but my smart and beautiful human being of a child, is having to go through some changes. Unfortunately, even though I know she is under some of the best care she can be under, I am still very sad for my daughter. I am mad for her. I am confused for her. I am frustrated for her. I guess I am all the things that she is, but I am allowed to act on my feelings, she isn’t. I can even yell and scream if I want to;)

The rest of Thursday though was AMAZING!!! I had such a beautiful and wonderful friend come over and work with the children. My kiddos just love this woman. They would do anything she told them to do. She did the neatest things with them. She worked with dry ice with them (which is something we have never done before), we even made dry ice juice. It was so fantastic, and honestly, I had a lot of fun too! We painted pumpkins, we tried to eat some healthy foods, and I know she did more with them, but I had to be on the phone figuring out the drama that Anne’s therapists’ boss caused, so I missed the rest of the activities. But I know one of the crafts was searching for leaves in the backyard, and then coloring them on paper. I hung their artwork up in their classroom. I think one of the drawings belongs to my friend, but hey, happy memories are happy memories no matter who drew it;)


Thursday evening the girls got to work on some community service too. Our neighbor leaves his dog out all the time. I know that I am not from this area, and this may be a common thing around here. I also know that my neighbor is not (currently) breaking any laws. But we are and have been trying desperately to have him allow us to help him care for his dog. We bought the dog a bark box, hoping that that would help sway him into allowing us to play with the dog once a week. But, he ignored us. So, we gave the box to our other neighbors, who really loved it! And I love when the girls get to give to someone, when they get nothing in return. It makes my heart happy to see the looks on their faces, the looks of achievement from making someone else feel happy.

Then Friday was awesome. Our friends came over, and notice I’m not calling her my new friend anymore And we painted more pumpkins!! But this time, all the older kiddos painted the pumpkins together. Meaning, there are three older kiddos, and there were three larger pumpkins. They each painted a side of each pumpkin. That way they all had to work together, and it got them talking to each other a bit more. Then, at the end of the project, they had to choose who got to keep which pumpkin. The little ones got to paint their own. Vincenzo took maybe a minute and was done. But his friend took his pumpkin very seriously, and he painted his pumpkin beautifully.

We also ordered pizza, because we had been through enough stress, and sometimes children just need to have pizza. One of the children fed my children energy water, which to my understanding is just his water that has his energy blessing, which I highly approve of Then my friend, went to pick up our glasses that were ready, well, because she’s a super kind human being. Like the kind of person who should be put up for an award for being just a super kind human being. Now my oldest daughter who has some trouble with reading and with her confidence, feels that she can read now. If glasses are what gives her the power to read, then I thank you thee glasses.

img_4641-e

We of course did our Bible, reading, math, science, writing, and so and so on. But I felt that what I told you was the gist of our week. It was wonderful, it was heartbreaking, it was fun, it was difficult. I need a nap. But no time for that. We are already into week 9! Which means though, that I am almost caught up. Once I am caught up, maybe I can share a Lyme update.

Also, I bought my children more Usborne books, because I LOVE Usborne books. And I won a Mystery Hostess Party!!! That means more books! I couldn’t be happier about that if I tried. My consultant helped my oldest, who feels that she struggles reading (which I disagree with), she helped her find a graphic novel that she can read at her age with some assistance. Isabella loves graphic novels and comic books, but she can’t read them yet. And she finally has her own book. I am so excited about it. We just got the books in today, and she has already read the first chapter.

isareading

Also, maybe no one cares, but I wanted everyone to know that I was honest with my newly 7-year-old daughter about what happened to her this week with her therapy. I usually hide what is happening in her life and try to take the brunt of the hardship for her. But not this time. This time I told her what happened, what is currently happening, who did what, why things are changing, and that it’s ok to feel however she wants to feel about that. She did tell me how she feels, which makes me feel really proud of her, but she said that she won’t act on those feelings because she doesn’t want to get in trouble. So, we still have a lot of work ahead of us.

Hard work is good work though, and I pray that all our frustrations, fears, and exhaustion will all end up paying off. Either way, I will not stop taking these feelings of hardships and frustrations to God. Even if I do misread his direction in my life;)

Week nine started bumpy. Not necessarily bad bumpy, just life bumpy. So, week nine will not be our selfie stick week. Put your tears away, it’s going to be OK. I am going to make this happen for you;) Just not this week.

I hope everyone, of all walks of life, is having a week full of love and adventure. Maybe more of the love and less of the adventure though.

img_3216-e

img_4847-e — I’m putting this one last because I love this picture because of the smile and the confidence on her face! But, it looks as if her answers are wrong, they are not. There are towers behind the numbers, and the numbers represent each tower.

If you love FB, you are welcome to follow us and get our updates there. We have a company working to improve the blog, we just need another month or three;) If you would like to follow us on FB, just click here.

Stuck At Homeschool – Week 7, All You Need Is Love

October 18, 2016 by onecakecloser ♥ 0 Leave a Comment

It’s difficult to write about week 7, because I am behind in my updates (that I’m sure no one actually seriously cares about), and we just finished week 8. I know more now, than I did in week 7, so I’m not sure I can write about week 7 without letting some of my week 8 feelings come out. So what I decided to do, was to take a bit of a different perspective on things.

img_2061-e

I have not recently given a Lyme update, and that is not on purpose, that is just due to lack

img_1738-e — I just thought you’d like to see what my son does during homeschool;)

of time. I will get around to that. But, for reasons that I will explain in another post, I have cancelled everything medically related (or postponed), and for many reasons. Now for those of you who actually know me, no worries, I am still seeing who I feel is necessary. My LLMD (who I have a new one, bit of a long story, drama free, but won’t be seeing him until next month, November), my cardiologist because of the burping (burping is a common sign for oncoming heart attacks), and my dentist four times a year. I have had awful trouble with my gums through all of this.

img_2190-e I had a lot of happy expectations for week 7, because week 7 was our week off from Classical Conversations. So this gave me a week to help the girls catch up a bit in areas I felt they lacked. It gave us an excuse to kind of switch things up, and it gave me an excuse to not exit my house so I can worry about trying to get better (from my pneumonia, not the Lyme, a week at home isn’t going to help the Lyme;). So that is what we did. I wish I could say that I relaxed way more than I did, but I didn’t. What I did do though, which is where I would like this blog post to concentrate on more, is spend time with my family, I got to receive blessings from God through his people, I got rescued from a friend from a bad smell in my home that would allow me no peace, and I got to spend time with who I like to think are new friends.

img_9809-e

I am going to warn you here, that I don’t know what I have told you or not in some areas, so please forgive me if I am obnoxiously repetitive. Once I catch up, I’m hoping that I will get better at that.

I can name 100 things to complain about two weeks ago. I mean, with ease. I could tell you img_1939-e things that would make you gasp, that would make you say “that’s not possible”, or “isn’t that illegal”, or “why would that even be happening?”. I can tell you that the children, though they got a lot of school done, didn’t get done all of the “fun” that I was hoping I could pull off. I could tell you of all the hours I have lost to my life and with my family because of all the sleep I have been needing, and what that has done to us. But I realized something this week. I realized that God is anything and everything that is good. He can do or not do whatever it is he is going to do or not do. But he does something that I have always found to be so miraculous, he chooses people, he chooses people to be his hands and feet. This week, week 7 (and also week 8), people proved to me that there is so so so much good in this world. I know my children are too young to fully comprehend what all of this means, but I explain it to them, and will continue to, and hopefully it will eventually rub off.

I learned that school, especially homeschool, is more than arithmetic, geography, reading, and writing. It’s about so much more. It’s about community service, it’s about learning how to be an active member to your community. It’s about learning love, and how very important that word is, and more importantly, the meaning of it and how to live that meaning out.

img_1714-e

I haven’t asked permission to my wonderful respite lady yet if I can talk about her on my blog. When I ask, I hope she says that I can. I of course can say some things, but I hope that she lets me tell more. Anyway. When we “interviewed” her (I used quotation marks because we didn’t know what we were doing, I was sick, Rob was so consumed at work, so we just kind of asked her random questions and asked when she can start), she seemed a bit nervous. I don’t blame her. If you walked into my house, you may be a bit nervous too. Between the two very very loud little yippie dogs jumping and barking very loudly at you, our huge cat trying to sit in your purse, Vincenzo immediately wrapping himself around your ankle as he sits on your foot and refuses to get off, Isabella and Anne running over with gifts they have made for her, and the house is such a mess it probably looks as if it may swallow her up. Poor thing probably wanted to turn right around and run for safety, and never come back. She can do what I was hoping she can do, but she can’t do these things during the times I was hoping she could. But I had a gut feeling with her. So she suggested that we interview other people, ha. But I asked if she could give us a try for just two weeks. Well, last week was the end of her two weeks, and she asked to come back. She is a brave brave soul;) This makes me very happy. Because she makes me happy. I don’t know her well yet, but I hope to get there. She seems spunky, she’s efficient, she’s kind, and she’s great at playing video games with Vincenzo. Once a week, for two weeks, that’s what she did. She played video games with him for 3 hours. When he calls her names like poop or baby, she corrects him kindly, which I’m very impressed with. I hope we have found our person. See, we have a lot of people in our home. We try to only allow people who, if we weren’t in the situation we were in, we would be friends with, some even family. We have some of the best people in our home. And that is what this week was all about.

img_1876-e

Friends came and prayed for me, for my husband, and for my children last week. Better yet, people we don’t know, came to our home, to pray for us. I believe that yes, I am sick, but my family is also under some incredibly awful spiritual warfare. I know that this is all God’s work, the people coming to our aid to pray. But these people had to be willing to take time out of their very busy schedules to do this. They have been of more help than they know. They took time out of their very busy schedules, and they came to our home, to help us through a very difficult time. The children got to see this, experience it, and benefit from it. And that’s some good school right there.

2 Corinthians 9:7 Each person should do as he has decided in his heart – not reluctantly or out of necessity, for God loves a cheerful giver. HCSB

Then there was the smell. Oh this awful smell of urine. It can’t be the cat. Anyone who has img_2091-e a cat knows, that you always know cat urine. I don’t know who’s this is, or where, or why. All I know is that I could not stand it for one more moment!! So for real, my family and friend took me seriously. Aren’t they so awesome? Rob threw a small couch out that smelled something awful, and washed the curtains (the couch is incredibly old and was more than ready to go, so don’t worry, I promise we weren’t being wasteful). Then my friend came over and cleaned that one section of the carpet that was making me feel sick. I know she so badly wanted to finish the entire carpet, but her son was sick, and her husband who she so very rarely gets to see, was home only for a few more hours. Yet she STILL came over just to get a smell out of my house. Which, totally worked by the way. Now we do have the pretty streak in our carpet and the rest of it looks extra gross, which it is. But the smell is gone!! She sacrificed time with her sick child, the very little time she gets with her husband, to come to my home and work hard to get a smell out. My children had to prep this area for my friend. As in move things, put things away, vacuum, and all so that a friend can come over just to love on us and to expel that smell! That’s some good school right there.

Then, my new friend (when do I get to stop calling her my new friend?) graced us not only with her presence, but with her children’s as well. We love having her, but when her children come, then my kiddos have other children to play with and to practice all of their social skills (or lack of skills) with. We all know that my children are homeschooled, therefore they obviously are not socialized. JUST KIDDING, before you get all worked up, it was just a joke. They are under socialized because they are stuck at home because their mama can’t drive. Anyway. They didn’t just come over; they came with gifts. They had a great time together, and I get to have a genuinely happy time with my new friend. I have come to really cherish these moments when my friend comes to visit. If it’s just her visiting, or if it’s her and her children. They are such a comfort to be with. A day just flies by when they are here, and they could stay the week, and I would love every moment. I do need to learn to shut my running mouth a little more, so I can learn more about her and her family, but she is kind and lets me just go on and on. Sometimes you just mesh with someone, and though I have no idea if she feels the same way, I feel that we just mesh. I don’t feel the need to care for her when she is in my home, I feel that she is almost like family, who can just go about as she pleases (which of course she can). We have had some good times together in our short friendship, and I hope to continue being proactive together with the children, because I really feel they are learning so much from each other. My kiddos really love having them over and they get so excited when they know that they are coming for a visit. Best part is, they are all so stubborn, they get into all sorts of little bickers, and they work them out (well some of them) on their own. That’s some good school right there!

The end result is, I learned something good about being stuck at homeschool last week. I learned that it can really bring out the best in people. I learned that my home was full of therapists, a wonderful respite lady, strangers to pray for us, friends to pray for us, and friends to just spend time with us. My children not only got to learn the basics that all children learn from school. Which, btw, in my opinion, I think my kiddos are having a great Classical Conversations year this year. They are much more relaxed and not complaining when we review for the 20th time that week. But my children learned that all of these people do these things for us, when we can’t do anything in return for them. We talked so much about it, Isabella asked if she can talk to God to give him her heart, and to tell him that she wants to live for him. She said that she wants the Holy Spirit to guide her, like it has all of these people that are so good to us. That’s, better that some good school right there, that’s everything I want for my children.

I’ve unfortunately seen a lot of bad in these past 8 months, this week (week 8), got even worse. As all of this evil is going on though, God is calling to his people to be his hands and feet, and they are. And for my secular friends, their hearts are telling them to do something, and they are doing it, knowing full well that we cannot do anything for them in return.

img_2070-e

I also am going to take the chance at sounding a little childish here, but I feel that I am making some real friends. I have the best friends, I really do, but most of them live far away. I do get lonely with small talk and chit chat. I have been creating some real relationships, and it feels amazing. My children, have also been doing the same. So guess what I’m going to say? That’s some good school right there;)

None of this makes my body better, well, at least it hasn’t yet. It doesn’t make my nervous system better. It doesn’t even help with the pneumonia. But what it does do, is it helps restore my spirituality, it helps me see the good in people when there are so many hurtful people in our lives right now, it is helping give my children an extraordinarily well rounded education, and most importantly it’s bringing myself and my family closer to God.

Now this has nothing to do with anything, I’m just letting you know, that part of my children’s schooling is challenges. I’m not sure if I have fully explained it, but I will soon. I am only mentioning it because they are starting to get some badges for finishing their challenges, their last challenge being cards, so I thought you’d like to have the slightest idea what those photos are.

img_2284-e

P.S. During week 7, I bought a selfie stick. Yes, I did. I’m so excited about it, that I wanted to make a whole week out of it. I wanted week 8 to be selfie stick week. We were just going to take selfies of everything we did, just to be super fun, and hopefully convince the children to want to be a little more involved. But, life happened, and we only have a few. Maybe week 9, or week 10, or just eventually. It’s OK for you to be excited, I won’t tell anyone;)

If you want to follow us on Facebook, just click here. Hope you’re having a good week!

“Composing with Color” An Ode To Uncle Uncle George

October 11, 2016October 11, 2016 by onecakecloser ♥ 0 Leave a Comment

unclegeorge-e My Uncle isn’t the only artist in the family. My family is full of talent, some very well known, and some less known. My father for example is a musician, composer, teacher and maker of music. My sister sings so beautifully, she even attempted to go to college for it. Music as a career turned out not to be where her heart was though. I have an Uncle who was a band master, a very generous and well known one within his own time.

I have always wondered what artistic characteristic traits my children will hold. Isabella, as a tiny thing, even before Anne was born (Anne was born when Isa was 10 ½ months old), had such a noticeable observation for rhythms and noises. When our dishwasher was going, it would have a bit of a consistency to it, and every day, Isabella happily danced around the kitchen to that beat. Anne, our daughter with Autism, didn’t show the same kind of obvious traits as her older sister, because she had a difficult time showing us who she was a person, she was always in her own head. But something Anne did, was cry. The only way to get her to stop crying, was to hold her to your chest, bounce her in an awkward type of way, and sing Twinkle Twinkle Little Star. Over, and over, and over, and over. One night we stayed at my parents’ house overnight, and my father asked if I stayed up the entire night singing that song? I told him that I did for most of it, and he could not believe that this is how we lived, and still yet managed to somehow get through our days. Even at such a young age, and with so much troubles, Anne was able to find comfort in music, and not just music, but repetition of the same chords over and over. That’s who she is as a person, and that’s the kind of art that she holds dear. Then Vincenzo came along. He came out rocking like he was born to be on stage. When he cried my husband would put on The Soapmakers by a band called Clutch, and Vincenzo would not just stop crying, he would become mesmerized, and then start moving his head to the beat. As he got older he took a very fast interest into the piano, the guitar, and most of all; the drums. When he plays the piano, he is so gentle and kind. But when he plays the guitar or the drums, he rips his shirt off and slams his head around. So far I see the most obvious art in my son, because he has always taken to such a variety of art from the start.

10645212_10203918398213731_3997860956009403721_n1

My children are homeschooled, and we are part of a community homeschool group called Classical Conversations. One week, during art, the children were to learn about abstract art. Well, Uncle George paints abstract art, they KNOW abstract art. Then they were asked to define it. They tried, but had some trouble. They were asked to draw it, again they tried, but were disappointed that their work didn’t look like their uncle’s;) So we did what is always best to do, we started at the very beginning.

The definition of abstract is, existing in thought or as an idea but not having a physical or concrete existence. Isabella found this definition to be fascinating. Anne found it to be obnoxious, frustrating, I would even go as far as to say infuriating at times. And Vincenzo, well he was two, and didn’t really care about much of anything abstract or not abstract;)
My Uncle George, my children’s Uncle Uncle as we like to say, he more recently paints to music. I am quoting him here, and I hope he doesn’t mind, as I haven’t asked his permission for any of this.

“My paintings are inspired by Jazz and Blues. I call my art “Composing with Color”. Everyone hears music differently. The way we perceive art is shaped by our taste and by emotions, situations and personalities. I have attempted to have music take on physical colors as it travels through air. My canvass is the manuscript on which the notes are painted. My ideal vision would be to create a world in colors as Thelonious Monk created a world of sounds.”

As soon as we got home from CC that day, Isabella went and found her head phones, and she started letting her colors and emotions fly onto the page. It couldn’t be wrong, it couldn’t be bad, it was a bit of herself in form of colors, textures, and movement. She thinks the entire concept is exhilarating and freeing.

11038253_10206265168041510_8406171055118312439_n1

11041124_10206265114920182_4232367096130195895_n1

11836829_10206265168761528_4666385703582797351_n1

Anne, not so much. Anne doesn’t have the same complex emotions. Well, of course she does, but they are locked away somewhere in her head. She doesn’t understand how her life situations and her personality can be put into art, and on top of that, why would anyone do such a thing? To top it all off, what is this thing that has no physical existence, but clearly physically exists, because she can see her Uncle’s art sitting right in front of her. Anne is a genius. She is not used to not understanding things, and this bothered her. This bothered her a whole lot. So she talked to her therapist, Mr. Tripp about it. Mr. Tripp happens to have a great fondness for abstract art, and Miles Davis is one of his favorite artists to listen to. So he brought Anne some books on abstract. She was to choose her favorite, and explain why. She chose one, and said she picked it because she was told to pick one;)

12651268_10207089642132847_4558157698266204237_n1

12651073_10207089641852840_6468903595985482907_n1

Every week at CC, the children must give a presentation. Anne decided to do hers on her Uncle George, because she was just so determined to understand this thing called abstract. She asked him questions, and we took in his artwork to show her friends. She defined abstract, and she explained how her Uncle chooses to share his love of paint and music with the world. But, she admittedly, still didn’t understand a word of what she was telling people.

12036626_10206320078014225_1824455386890129940_n1

An entire year now Anne has been trying to figure out abstract. She listens to music, just like her uncle does, and she tries to imagine if it had color what it would look like. Though, last I asked her what it felt like, she gave me a funny look, so we aren’t there yet, but we are on our way.

We don’t just work on abstract though, we do art just about every day. We do art while we do our chores, we do art when we prepare our food, we do art when create, when we design, we do art all the time. And yes, I know, that rhymed:) Since Anne, my newly seven-year-old daughter has spent an entire year trying to figure out one word, her therapist rewarded her with allowing her to paint a canvass with acrylic and oil paint. The good stuff. The stuff that stains Ohhh, did my girls love that so dearly. So, our house has been a bit of an artist’s loft since, which I think is fabulous. Any bit of paint left behind on my table or on my clothes, is the happiest memory of my children learning to love art even more than they already did.

12742422_10207171110329501_4848206016071338426_n1

10923267_10204570490275625_8036236547716742491_n1

10703601_10203623100431471_6724783737268489590_n1

Uncle George, being the amazing Uncle he is, sent me a new painting. I am in my room an awful lot these days with my illness. And I want to be surrounded by beauty. I have by far my most favorite painting in my room that my Uncle George painted to my wedding song with Rob, Yellow by Coldplay. I have my seal that my bestie made for me when we were in high school. I have a sad woman reading what I feel like is the bible while she is feeling in such despair. I have seals and sea lions everywhere. I have my children’s artwork in every direction you can look. I have old stitches, cards from dear friends, a lamp that was my grandmothers, some framed memories, and of course my husband has Star Wars and A Christmas Story’s leg lamp. But over the bed, this place where I spend so much of my time, it is just empty. Well, it no longer is. Now it is filled with beauty, with color, with depth, with emotions.

When this box came to my home, it caused quite the excitement in my home, because the img_8644-e box was very large. We all opened it together. The children asked to touch it. My instinct was to tell them no, because my Uncle worked very hard on this, it’s for looking not for touching. Then I just as quickly realized how very wrong I was. Of course they can touch it. Touch it, learn from it, experience it. So they did. And they were just in awe with how much texture there was. So they brought out their oils again, and they got to work. Every single day they went back to these paintings. They painted them to Miles Davis, Dee Dee Bridgewater, Lady Gaga, David Bowie, and Taylor Swift. I didn’t think these paintings were ever going to dry. They sat in my kitchen wet as can be for over a week. Until finally, they dried.

img_8670-e

Years ago, my children painted their Uncle George a picture, so he could paint them one in return. Their lazy mother, whoever that lady is, never got them in the mail. Now, I want them to make him one of these beautiful creations, if I am able to let go of them that is;)

These paintings are so beautiful, so in depth, and you can really see their personalities shine through them. Anne is still painting to please others. She covered most of her canvass in black because I love black, but she is still working hard at being Anne, and not who she thinks people want her to be.

Do my children completely comprehend what the word abstract means yet? Probably not. But what they do know is art. They know that art isn’t always in a painting or a professional looking photograph. They know that art is all around us all the time. From the dishwasher, to what to wear today, to new and unique ways to express their emotions.

This, I could not have done alone. I thank you Uncle George, I love your drive, I am honored to be surrounded by your perspective and your gift of beauty, but most of all I am thankful for the influence you have shared upon my children.

Again, my Uncle is not the only artist in our family, but this particular blog post is for him, and for his way of sharing with the rest of us how color can travel, how emotions can be expressed, how our life situations can be engrained into a blank canvas, and so much more.

I’m not sure how my children will choose to express their art, and I’m definitely not sure that Anne will every fully grasp the concept of abstract. But I love the gift that has been given to me, the gift of being able to watch them experience art, especially when it makes their hearts soar. That is a gift where the happiness it brings me cannot be measured. So thank you to my Uncle George, and thank you to all of those who bring art alive and well every day.

img_2521-e

12687944_1272328309461091_8900496365598602198_n1

11951163_10206196083234433_1890064073736169485_n1

11007727_10204930463674735_770861437463835440_n1

12472594_10207579595981387_7499583840653633121_n

If you would like to see more of my Uncles Work, please click on the word here.
If you would like to follow us on Facebook, for our daily adventures, please click on the word here.

Happy Tuesday, and I hope you go a little out of your way this week to look for all of the beauty and the art that surrounds us at all times. My motto is, whenever in doubt, look up. The sky is full of free artwork from THE Creator Himself.

I also just want to throw in a quick discloser, that these photos were taken by my mobile phone. So my Uncles work is not shown in it’s real depth and beauty. I am just too sick right now to get my real camera out and open up a real editing program.

Stuck At Homeschool, Week 6, Let Go And Let God

October 9, 2016 by onecakecloser ♥ 0 Leave a Comment

Week four, five, and six (which I haven’t written about 6 yet); these are the weeks where your strength really shines through. What an awful week, week four was, and unfortunately, week five was no better. We managed through it though, and week six turned out to be much better. Week five was unique though, because it was full of so many birthdays, birthday celebrations, and friends coming over to pray for us, that it may not have been an easy week, but it was one that was full of blessings.

Over the weekend we had thrown the children a small birthday party at Beef ‘O’ Brady’s. We usually don’t throw parties for our children, only because we find them to be more stressful than it’s worth. We have a lot of family traditions that we follow at home for the children for their birthdays, so don’t worry, they get plenty spoiled and celebrated. Should we have cancelled this party? Probably. But I wasn’t going to waste the time of others who had agreed to come, and I didn’t want to hurt any potential business that the amazing Beef ‘O’ Brady’s may have, since they had secured that room for us. The party was happening. It was a great success, other than I thought I wasn’t going to make it through most of it. I took all my meds, but clearly should have taken them earlier. Being in a room with a lot of people, 8 televisions (playing different things), and balloons (I have a thing against balloons), should have all been good signs to take my meds maybe an hour earlier than I did. I did finally start to feel better, but unfortunately, it was only for about the last 20 minutes, so I didn’t really get to see many of the adults at the party. And, yes I broke the rule, I got up and took a standing picture while holding my son. Why? Because that’s what my kiddos wanted, so that’s what I did. And I survived it. And now I’m happy to have a picture of my family where I’m not in my chair. There is nothing wrong with wheelchairs. But being able to get out of it every now and then, reminds me that my goal is to go into remission, and not just to get used to my new normal.

10424251_798389570225094_2471715874733680050_n

943558_798389550225096_1683188033188884159_n

10615496_820269954703722_5950713863878532030_n

13920709_1184150378315676_8387105146935040545_n

13902546_1184448571619190_3673364603341464087_n

13934829_1185488231515224_3086879638641947_n

Now a real emotional time for me, was cakes. I am a baker. And my children get to pick out whatever cake they want for their special day. My middle child usually designs hers, and then shows it to me. It’s something special that I get to do for them every year. This year I couldn’t do it, so my friend’s daughter said that she would bake for them, and that she would bake them with love. She understood my sadness over the cakes. The only problem is, she’s super good, as in better than me;) So, now I’m a bit jealous. But, at least I have something to work toward once I get back in the kitchen. 😉

Monday was a super fun day. We got to do a lot of homeschool, but we made it extra fun, because it was my middle child’s birthday. She turned 7 Yes, I cried when I told her goodnight for the last time as a 6-year-old. An example of how we made it more fun, is instead of exercise in the morning, she got to play twister. We also got to school wherever she wanted to. She picked out back, the dining room table, and the living room floor.

Tuesday is our Classical Conversations day. Those are always such a success. It was cute to watch my children curl up to Ms. Amber, one of the teachers, the same woman who helped us the week before. They just love them some Ms. Amber. Also, Vincenzo, who just turned 4 (which I am in denial about) wants to join the class too. So we are going to try to make that work for him. I think he really just wants to be around friends and have some structure, but those are both great reasons to join a classroom setting. And of course to top it all off, they got to share cupcakes with their friends, because it was birthday week in our home. That’s always the icing on the cake;)

Wednesday was stressful. My oldest had to get tubes in her ears. I know this is not a procedure to get worked up over (though we did agree to having her tonsils and adenoids removed if they felt that those were also a problem), but my daughter has a high tolerance to anesthesia. She has had two surgeries in the past. The first one (which was done in Louisiana) went terribly wrong. Since we moved to Columbia, SC, we had her next surgery done at the Children’s hospital here, and they had made sure that what went wrong the first time, will not go wrong again, at least while she was in their care. They give her extra time, I believe these past two surgeries they have given her about 30 minutes to really be asleep, before doing anything. So we know she is safe, but that fear still lingers in the back of our minds, and of course our daughter was an emotional wreck, deservingly so. She did an amazing job though, and I couldn’t be more proud! Hopefully surgery three, or procedure as she likes to call this one, is the last for a while. Anne, the middle child, did some homeschool, a half day worth. But Isabella, the oldest, got the day off, and has a doctor’s note. She also got as spoiled as possible all day to reinforce this good memory, in hopes that her brain starts to feel a little more safe.

Paddington Bear was my bear when I was a little girl. I had to have my tonsils and adenoids removed when I was four, and Paddington was one. He got the surgery with me. To this day, he still has the wrist band around his neck from his surgery. So Isabella decided that she wanted both Paddington and Bunny to have surgery with her. So they put another surgery bracelet around his neck for her. He is actually 31 I believe, but it was too early for any of us to Math.

Thursday, between Rob and myself, we had so many appointments. But we got in almost as much homeschool as a normal day. The only difference is Isabella chose not to be involved with any physical activities, being that she still had an ear infection, which I made a note of in her records, and I think is very understandable. This day was also different because it was Vincenzo’s birthday. How much can one mothers heart take?!? So not really much changed, he was just an extra bit wild and spoiled, that’s all. Also we broke our tradition and allowed friends to bring us dinner. So we ate Chick Fil-A for dinner, and an absolutely incredible Star Wars cake for dessert.

Friday, not only did we get to get a lot of work done, but we had friends come over. So we got social time and they all got to learn together. Then they got to have some fun. Their choice of fun was pouring water over their heads (not Isabella), and drawing all over themselves with marker. They had an amazing time, and I got to spend some time with a new friend.

During the week, I remember feeling like a failure to my children, as if I am not giving them the education that they need. But when I go to record keep what they have accomplished that week, I was totally blown away! They got so much done, they overcame so many real life problems, and they had a great time. I really need to learn how to let go and let God. Everything turned out just perfectly fine in the end.

My father wrote a prayer that I am concentrating on this week.

Dear Lord, fear has pushed me when you wanted me to be led by your loving hand. Fear has tormented me when you wanted me to enjoy your soothing peace. Fear has stolen from me when you wanted me to possess more than an enough. I will stand against fear. I will conquer fear in the power of Jesus Christ Amen.

I think this is a perfect way to end week five. I still had pneumonia, and still do. I am still sick, as is my husband. But we didn’t just homeschool our children, we did it with all of our hearts.

So in the end, yet another success. Just this week coming up, a little more of letting go, and letting God!

14449055_10210956492856325_3729776419215739065_n

Also, I’m on the understanding it was National Coffee Day over the week, and I did my best to celebrate. I hope I got the correct day:)

If you would like to find the amazing woman that baked our amazing cakes, click here.
If you would like to follow us on Facebook, click here.

I Finally Get To Be Warm And Cozy (in the most awesome way possible:)

October 8, 2016 by onecakecloser ♥ 0 Leave a Comment

Our 7 year old daughter took this photo with us, and I just had to share. I have had the worst time staying warm these days. I have been talking about getting a snuggie since, well for a long time, and I finally did it. So I got my husband one too. I love us:)

Now I’m just waiting on my slippers. Then I can finally be warm and cozy, and still feel awesome.

The girls have mermaid blankets, the boy has a shark blanket (which I will get a photo of), and I think we are finally all set!

If you want to follow us on Facebook, just click here.

Stuck At Homeschool – Week 5 (And A Little Bit Of A Lyme Update Too)

October 8, 2016March 13, 2017 by onecakecloser ♥ 2 Comments

Building Mugs of MUSC - horseshoe area(Sarah Bates Pack/MUSC) — Building Mugs of MUSC – horseshoe area (Sarah Bates Pack/MUSC)

I’m so far behind on my updates, I’m not even really sure what I can say about this week. I can say this week was completely awful. I know it started over the weekend. I remember Rob wanting to feed me, and I didn’t want to eat. I’m like a toddler. If I’m not eating, I’m sick. But with all of the medications I am on, I just assumed that one was making me not interested in food, because that does happen here and there. I think I was waiting to tell everyone about this, because I have been waiting to be healthy enough to give a Lyme update, and instead I just got myself behind and all confused.

Monday morning, I woke up disgustingly sick. More sick than what I can handle. I’ve had my fill of hospitals. So my loving husband called my doctor and made an appointment for me, but it wasn’t until the afternoon. TMI warning here. My throat hurt to the point of it bleeding when I would cough or vomit. I would take a sip of water, and choke on it for a moment, and then I would throw it back up. I threw up all of my meds, the good ones and the bad ones (which really burns btw, especially when you have a raw and bloody throat). I couldn’t sleep for even a moment, so I was exhausted, and my body hurt in a way that I can’t put into words. I took more sleeping pills than I’m willing to say out loud, or write down, and still couldn’t sleep. I was an absolute and complete mess. So I asked Rob, ok let me rephrase that, so I begged Rob to call Urgent Care. He learned that we get two Urgent Care Clinic visits a year. So he called there, (Doctors Care on Hardscrabble, which they were amazing btw), and that’s where we went instead. I had, well have, pneumonia. She wasn’t convinced that was all, so she said she took some more tests and would be back in touch. She wanted me to be admitted into the hospital downtown, and I said no thank you. So she gave me an awful painful shot of antibiotics in my tush, and she prescribed me antibiotics for the pneumonia. Problem is, because don’t forget, every blog post there has to be a problem; I had my appointment with MUSC the next day. I did not want to go!!! Like the thought of it made me even more sick and want to cry! My body hurt so incredibly intensely. The simplicity of breathing was becoming difficult. I was vomiting, dehydrated like I don’t think I have ever been before, and my throat was raw as could be. But she said that it was completely necessary that I go. I was determined (I didn’t even have to pee first thing in the morning) that I wasn’t going to go.

So here’s the deal. I get that it isn’t fair to children that are homeschooled when their teacher, meaning their parent, is sick. If they were in public school, they would have a substitute teacher. Whereas for us, they miss out on school. But that morning, I was so desperate, I posted on FB that I was sick and needed help with the children. An incredibly kind person, who I have grown to care for and respect at lightning speed, took the children for me. I don’t remember how they got there. Maybe she came and got them. Maybe Rob dropped them off. So that day they did not go to school. No they do not have a doctor’s note, but I do. That Monday was Pirate Day. So sweet wonderful kind Amber dressed everyone up, and they all went and got free donuts. She also played with them individually, she feed them good and healthy food, she kept them busy, and my children and her children very much got along. Even better, they are in the same homeschool group, so I love that they got to know them better.

Before anyone gets worked up that I marked my children absent that day, my kiddos go to school on all the days that public schools take off for whatever reasons they take off. Parent teacher day, they need to get organized day, whatever it is that schools do day. So my kiddos are not even close to behind and their education is not being set back. And yes, I am going to rant a little more about this later.

That Tuesday, after a long night of vomiting and no sleep, I made the really difficult decision to go to MUSC. My reasoning was, I was so miserable as it was, it’s not like I was warm and comfy at home, so I may as well go and get something accomplished. Here is something you may enjoy though. I love to watch British T.V. So all night long I was watching some series that Rob and I can never remember the name to. Larkrise to Candleford maybe? So we always call it something different, such as 45 Parklane Road. He dreams in British accents. He always knows when I couldn’t sleep, because he wakes up telling me that all of his dreams were full of British accents. Which honestly, sounds quite lovely to me. So Amber, this new amazing person in my life, took my children to their homeschool group that day, so they did not have to miss another day of school. She actually is their teacher, so it worked out just perfectly. I was too sick and scared of MUSC to have to worry about my children on top of all of that. So it was so nice to know that my children were in great hands. I fully trust everyone in our Classical Conversations group with my kiddos, and that says a whole lot.

We get to MUSC, and I’m so scared, that the moment Rob rolls me in, I start to vomit (into a Target bag, you’re welcome for the free advertising Target;), and I started to cry. I cried through all of my interviews to the point where Rob had to answer most things for me. Once I got to the neurologist, I had calmed down some. He was nice. He is not Lyme Literate which is very much unfortunate (to say the least), but he was nice. Now the “best Neurologist in SC”, not so much with the nice stuff. But, I can’t have it all, can I. To make a long story short, they want to do a whole bunch of awful tests to prove that the Lyme is in my system, especially my brain. So we made the next 4 appointments and came back home. We also came back to another sleepless night, and still no eating, and no meds.

The next day Anne’s therapist came. I know I’ve said this before, but I’m going to say it again. I LOVE ANNE’S THERAPISTS!!! She didn’t break any rules and teach the children, nothing like that, but just her presence is such a great comfort to me, and the same goes for her afternoon therapist who we only get to see twice a week now. Rob had a doctor appointment that day in Orangeburg. I have no idea where that is, I just know that if it weren’t for Anne’s therapist, I would have been alone with the kiddos. The person who hasn’t slept, or eaten in days now. We had a half day of school that day, and the children did an amazing job. I’m super duper proud of them, especially the one with Autism, because I know caring about other people’s feelings and problems, really isn’t her thing. They clearly knew how bad I was feeling though, they really had had a great week so far, and they were super cooperative with just doing the work that I needed them to do.

The next day I get a call that I had Strep B as well, that’s why I was having such a difficult time with my throat. Thankfully I was no longer contagious, and even more thankfully, no one else has come down with it. I had an appointment that day, and Rob had two appointments that day, so the children had another half day, but they had a really good time that day. They also got to apply a lot of their new learned social skills, which makes this mama very happy.

The next day, Friday, we not just had a full day of school, we went well into the evening and had a great time. Those pneumonia antibiotics really work fast. And again, my kiddos were just so amazing. It was as if God was gracing us with a gift. Downfall was, I was throwing up my meds all week, so I started to learn what withdraw feels like. Not a cool feeling. So I didn’t say the day was easy. But we still kicked butt that day and we accomplished so much, and we had a great time doing it, even through my misery.

Anne even ate a spinach salad, because that’s what they eat at Ms. Amber’s House.

My health my fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever. Psalm 73:26 (Thank you Mom).

Though this week was more difficult than I would even like to think back on, it was in a way necessary, because it changed my attitude about how I will be treating my Lyme and my very clearly weak immune system. But that’s for a Lyme post. I try to keep Lyme posts with Lyme updates, and homeschool posts with how we homeschool being stuck at home. But as you can imagine, this week was in God’s hands completely. Every week should be, but that’s easier said than done. This week I was too sick to do anything more but to just give everything to God. And God more than took care of me. He put people in my life who have changed so much of my heart.

My Sade Girl is always there to make me feel better.

That will be for the next few posts. Sorry I don’t have any interesting homeschool updates for you this week. But, this week we were just in survival mode.

Here is where I’m going to explain things, that no, really aren’t your business. But the reason I am explaining them, is because I know homeschoolers get a lot of backlash for this kind of stuff. When my children need to miss school, I always have a doctor’s note. If for some reason they need to have a half day, I have an attendance sheet where I show they had a half day, and I explain why. My children have, even with all that has been going on, have gone to more school than the children in public school have (and I of course mean here where we live). I am not saying that homeschool is better, I am just saying for those who want to judge when my children have to take a day off or have to take a half day, you have no place to judge. Also, a half day at homeschool is, in my opinion, a full day at public school. I have two students, not 20-40. Four hours of nonstop school work is an incredible amount of work. I don’t need to keep stopping for behavioral issues, a sick child, bathroom mistakes, I don’t have to line children up and take them from here to there and from there to here. I sit down and work two to one, with two children, for four hours. My kiddos also exercise, they take music, they are taking two other languages, and they do community service. So they aren’t missing out on anything that they would be getting in a school setting. I probably sound harsher than I should, because before I knew that I had to homeschool my children, I judged homeschool families as well. But I am telling you, as a prior judger myself, these children are getting a very full and very exciting education. Even when mom gets sick or we need to take a half day for some reason.

Here is a picture of our adorable cat, in case you feel mad after my rant;)

I also want to give full credit to God, to my incredible husband, to my family that helps, and to my absolutely incredible community of friends and acquaintances. It really does take a village.

If you want to follow us on Facebook, click here.

One Cake Closer

A girl and her journey through this thing called life.

I have no idea what tomorrow is going to bring, but I do know that today I woke up with a song of thankfulness in my heart, and for that … I am blessed.

Dear Newington United Methodist Church

Happy Halloween

Living With Lyme – Survival Mode (14)

Stuck At Homeschool Week 8 – If Weeks Could Be A Roller Coaster, This One Would Be a Doozy

Stuck At Homeschool – Week 7, All You Need Is Love

“Composing with Color” An Ode To Uncle Uncle George

Stuck At Homeschool, Week 6, Let Go And Let God

I Finally Get To Be Warm And Cozy (in the most awesome way possible:)

Stuck At Homeschool – Week 5 (And A Little Bit Of A Lyme Update Too)

I have no idea what tomorrow is going to bring, but I do know that today I woke up with a song of thankfulness in my heart, and for that … I am blessed.

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this: