My life has taken me through some crazy adventures and led me to some blessed hurdles. So join me as I take you through my journey of overcoming the odds.I can’t say that I was a Christian my whole life so when I finally surrendered my life to Christ, this scripture has gotten me through some really tough times: For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope. Jeremiah 29:11
I think really that my only major hurdle that I dealt with was my diagnosis of Friedreich’s Ataxia. So really when I think about it, everything that I have overcome was a complication of something to do with my disease. I was in the 4th grade when I was diagnosed with scoliosis (a sign of Friedreich’s Ataxia) around the age of 9. The Ataxia did not really affect much that was noticeable to young children so I never really understood the complications of the disease. So when I was around 9 and fitted for a back brace that was supposedly supposed to help stop the curvature of my spine to not get worse but guess what, that didn’t really work. Not only was I different but now I looked different and I really didn’t understand why kids looked at me funny and didn’t want to hang out but I was way too young to know about that stuff.
I met this little girl in Elementary School named Chrisina, who was my first best friend and also turned out to be a cousin. She was a special friend who never looked at me as different. She and her entire family accepted me with open arms. Looking back I’m really sad to admit that we have let life get in the way and really don’t see each
other anymore. This picture is from the 5th or 6th grade.
I remember during my childhood, how many crushes I had on boys and how I just couldn’t understand why they didn’t like me.
Besides dealing with my back brace, I had this really ugly hairy birthmark on the bottom right hand side of my right leg and it was about the size of two half dollars. So when I was about to go to high school, my doctors decided to put Harrington rods in my back to keep the spine from curving anymore because there was potential of serious future complications if the curvature of the spine was not stopped. At least that’s what I remember but I’m sure I could be wrong. LOL! Anyway when I had back surgery the summer before my 9th grade year, my mother had a plastic surgeon look at my birthmark and I asked him if I could shave it and he said well why don’t we remove it? I was ecstatic! Not only was I going to have surgery to fix my back and not have to wear a back brace anymore, now I was actually getting to have my nasty birthmark removed and now I wouldn’t have that ugly eyesore anymore. So that’s what they did. So after back surgery and having my birthmark removed, I then had to wear another back brace after the surgery so my back could heal properly and I had a nasty scar on my leg now. Are you kidding me, I couldn’t win for losing!
Anyway I just dealt with what I was given. There was still the issue with my disease that would cause problems but I never really understood what those were until now. I was different but who wasn’t?! And I didn’t have a boyfriend but I had tons of friends. I just learned to adapt to what I needed to do to get where I needed to go and so on. Like for instance when I would walk long distances, I went a little and I’d get tired and winded, so I would take little breaks often. And I had an issue with going up and down stairs so when I went to high school I was given a key for the elevator. And when I was somewhere else I would hold someones arm or hand when I had to go up and down stairs. You know I just adapted. God gave me these obstacles and I just learned to deal with it. I didn’t understand the ramifications of my disease. All I ever really understood was that I was different and I wore a back brace to straighten my spine which didn’t work.
My parents never discussed the ins or outs of my disease; all I knew was the name of it and it affected my walking and my balance but my insides were normal. I never really looked it up and found out what was going on and what the future had in store for me until I went to college. Me and one of my best friends from college!
I was quite BLOWN AWAY with what I read! Can you imagine being 17/18 years old and pretty much starting life on your own in college, and now you’ve just read that you have a terminal disease. So I really thought well that’s it, this is how life is going to go and I need to deal with what I can. That’s all we can do?!?!
However I enjoyed the heck out of my college years. I met some of my life long friends there; I wouldn’t know what to do without them. I remember going to dinner with my best friend and her boyfriend; and her boyfriend was told by a relative of mine that I would not live to see 21. I never told my parents who said that and I was about 19 at the time and I am 47 right now, so I don’t think what that relative said is entirely true.😂
I’m going to talk a little about my social life in college. I was always the third or fifth wheel with my friends. I was pretty insecure and thought I was too skinny and not pretty enough and I had an incurable disease, so I just thought there was no way that anyone was going to want to be with me. I let my insecurities dictate how I was going to live my life. When I started going out to bars and just hanging out, guys started to pay attention to me which was a total shock. My self-esteem actually started rising a little and I was like OMG guys really do like me! But I never wanted to walk in front of guys that I liked or was talking to. I was not thinking of forever but rather having someone to just hang out with and to just call and talk to about my day. I had turned down countless different invitations to meet families, go to dances, etc; just because I thought whoever I was with would think that I was defective if they saw me walk. I finally woke up when I met Mark and after we were married and took in the girls, things had slowly started to change and my constant worry of what everyone else thought finally started to evaporate. But not totally! 🤣 (I mean I am human!) And of course I never would have gotten through that without God by my side!
My next hurdle in life was taking in my four sisters-in-law. That doesn’t seem like obstacles
to most or to me now I know that it was not an obstacle at all, it was really just part of God’s plan! It was only an obstacle because of my own stupid fear of not being enough. I was worried they would think less of me because I wasn’t like everyone else. So I would try not to walk in front of them and then in turn Mark would carry me everywhere and I would not do the exercises that I needed to do just to keep my body going. Irregardless of keeping my exercises up, having the girls here gave me a purpose. You know I just kept thinking that these four girls did not have a normal childhood, not that mine was all around the best but definitely somewhat normal. So I made it my personal goal to try to give them some normalcy. I have recently been going through some photo albums for a project that I am working on and when I was gathering pictures it dawned on me that not only did we create an incredible family bond but in a way they helped me overcome some of my battles.
One of the major ones was when I fell and broke my hip. I remember the day, it was March 13th 2008 when I was babysitting Chloé and the girls were at school. I was walking out of my room with my walker and I’m not sure what happened, but I fell on my left side. Oh the pain was so excruciatingly horrible. Chloé was sitting on the couch right across from where I fell, she watched me as I fell, and I was screaming and crying. I’m sure I scared the crap out of her, but she got me a pillow and put it under my head. She was only 5 at the time and she got me the phone so I could call Mark, he was working with Acadian Ambulance at the time. Anyway he and his partner, Laura came and picked me up and brought me by ambulance to the hospital. So all of that to say I had surgery to repair my broken hip, and I was in the hospital for a while and then I was moved to the Rehab Hospital for two weeks. Stephanie was in college at the time and Rita was going to Paul Mitchell College. I remember those girls did so much for me during that time. I was so incredibly depressed then; I couldn’t go home and my best friend was getting married and I missed her bridal shower because I was in rehab. I remember the girls coming and bringing me Sonic shakes just to cheer me up. Rita would come to wash and braid my hair. And just spend some time with me.When I got out and was home and Mark was working and couldn’t get off, Stephanie would bring me to water therapy and it wasn’t just bringing me to therapy; it was helping me change into my swimsuit and sitting around waiting for me to finish and then helping me change again to go home. And just to think that those girls were there for me as much as I was there for them.
So after breaking the hip thing and now having more trouble getting around, I started using the wheelchair all the time. Before this I would only use it like when we were out. So I went through another bout of depression. I was having to rely more on help. So inevitably my disease was getting a little worse. But I just had to plow through with this other hiccup in my life. Psalms 46:1 NLT
[1] God is our refuge and strength, always ready to help in times of trouble.
So around this time, there was talk at the church about a medical mission trip to El Salvador. I wanted to go and help, but I didn’t know if I would be able to go being in the wheelchair. And besides that I did not feel like I was a strong enough Christians to help spread the Gospel, but I still wanted to help. I just didn’t know how.
We were at a church function, and I remember talking to Lori Ray because she had gone on several mission trips with her whole family. She is Pastor Randy’s wife and who better to talk to than her, right?! So I talked to her and she eased my mind. So we gathered the money together and off we went.
From the time when we got together, Mark would give me piggy back rides up the stairs in the movies so I wouldn’t have to sit at the bottom. So when we went to El Salvador it was no different. If there was somewhere we couldn’t get to with the wheelchair, he would put me on his back and get where we needed to go.
I remember the first stop that we made was to a big open field; and they had inflatables for the kids. There were a lot of people there and kids and it was my job to give out “Jesus loves you” stickers and tracks to the kids. I remember sitting out there in my wheelchair and handing out stickers and the kids were swarming me. Those kids didn’t care at all that I was different but I was just showing them the love of Jesus! That was the best feeling
We went back the summer of 2009 and we brought our second too youngest sister that we raised. She loved it and that was the first of many many mission trips for her. And some of the last ones that she took was with the Allen Family to Uganda, Africa. I would love to go with the Allen’s but unfortunately I think my mission trip days are over. I really would love for my children to go on a mission trip and have the experience of serving others and gaining that wonderful feeling of bringing Jesus to others.
And even though I have God with me I am still human and I am always worried about what people think about me and if they are talking about me. None of that really matters so I’m still trying to learn how to give it to God and let go!
The next major obstacle in my life was my first pregnancy. My husband always said that the doctors told me that I couldn’t have children, but that isn’t entirely true. It was never really mentioned because quite honestly me getting married was never expected much less having a child. I remember going to see my obstetrician when I was in my early thirties and he came in to do my exam and proceeded to tell me that he was researching my disease and he said, “You know, you can have children.” “I then said, I only have two girls (that we raised) at home and we just put down a deposit on our first cruise. He said, “Okay, I was just saying that you could if you wanted to.” Who knew those words were going to come true very soon!So yes I was pregnant at about 32 years old. Pregnancy really was not as hard as probably many thought. I had to go and have ultrasounds every month to make sure the baby was developing like normal. I had to do physical therapy while I was pregnant. I was told by my therapist that my doctors were trying to ensure that I was strong enough to push. I was also told by my therapist that she didn’t think I was going to be able to push. Well that was all I needed to hear!
So when May 6th rolled around I was induced and because I had Herrington rods in my back, I couldn’t have an epidural so I had to push her out naturally. I remember when the anesthesiologist came in the room, he said you cannot have an epidural because of the Harrington rods in your back. So I very calmly turned to him and said, “Well then how is she going to come out? So he told me, Well you have two options; you can either push her out naturally or we can to put you under and do a C-section. So I said I’m not going under! I want to see my baby born! So then I guess I’ll go natural.” My thought process was, there is too much going on with my body and I didn’t want to cut through the muscles in my stomach unnecessarily. And besides that, I wanted to be alert and aware of everything that was going on because I probably wouldn’t get the chance to do it again!
Oh my, it was very painful but it was very worth it also! You know even though the pain was horrible, when she was out, I said to myself, that wasn’t so bad and I could do it again! Man God was truly listening because I got my chance to do it again 6 and 1/2 years later!After I had her I was determined to breastfeed her for at least a year and I remember my dad saying that he didn’t think I could go past six months. Breastfeeding was also painful for the first couple of months but I was determined to push through! I mean it was better for the baby and I figured it would be easier on Mark because he had enough to do with me and the baby without having to make up bottles. When she was three or four months old and sleeping through the night, I would set my alarm in the middle of the night and Mark and I would get up. He would get all of the pumping stuff together and I would pump in the middle of the night, so I could start freezing for later. So in all seriousness that probably was putting a little more strain on him, but he never acted like it was a burden on him. So yes, even though it was a little more difficult given my situation, I breastfed her for 15 months!
After I had Maggie, I had lost just about all trunk control and it was a lot harder for me to get around. But to me that was just a part of life. I went through quite a few traumatizing falls that landed me in the hospital but Life Goes On!! I am not the type of person who would sit back and watch everything else happen; when we would do fun things like SeaWorld and Disney World, I wanted to be right there with my daughter on every ride and whatever she wanted to do! My thing was I was not having anymore children and I wanted her to experience everything that other children got to experience. I didn’t want her to grow up with her mother who was disabled, so she didn’t get to do the same thing everyone else did. But I’m sure her 13-year-old self would tell you different!!😂
It was all about to change when she was in kindergarten at Hammond Eastside Magnet School, and at 39 years old I find myself pregnant again. How did that happen?! I was way too old to have a baby and I couldn’t do it again. But God definitely knows better and He has a plan!
Psalms 127:3 NLT[3] Children are a gift from the Lord; they are a reward from him.This pregnancy was way different from the first one. For one I was way older, 39 years old. In my mind I was way too old to have a baby, but God didn’t see it that way and He has a plan for my life!I was in the bed almost the entire pregnancy not because I was on bed rest but because I was just worn out! LOL I was hurting a lot and then I just didn’t feel like getting out much. So that in itself made everything different. All in all, it went well but it was tough and tiring.
So on October 11, 2016 Sofia Celeste Cheramie was born at 1:04 p.m. I chose to go natural because I didn’t like the fact that I was so out of it and tired when Maggie was born that I didn’t feel like I really got to enjoy it. If you can enjoy it?!🤣 There was those few that thought that I could not do it but I did it and without problems. And yes I nursed her until she was 14 months old. Now came the fun part of raising 2 young daughters with me being at the ripe old age of 40! Yes crazy I know! The Bible tells us that every good and perfect gift is from above! And despite the difficulties of pregnancy, this verse rings true!
James 1:17 NLT
Whatever is good and perfect is a gift coming down to us from God our Father, who created all the lights in the heavens. He never changes or casts a shifting shadow.
The next major thing that some would say I overcame was our dealings with Covid-19. When Mark got sick and was in the hospital for three weeks, it was a very hard, emotional, and depressing time for me. I already wrote a blog about this but yes we overcame this obstacle too!
When covid-19 reared its ugly head, we started to consider homeschooling. There were people who thought that it was going to be too difficult on us. But I felt that they were really thinking that it would be way too much on Mark to do. Which totally frustrates the tar out of me because I feel like no one thinks that I can do anything without Mark. And yes I like to have him there for pretty much everything because I cannot imagine doing things without him. It feels to me that if he is not there, something is wrong. But in saying that, I love my kids and I love teaching my kids and I love to watch them learn things that I have taught them. And right now we have been at the homeschooling thing for 4 years already and I have gotten way closer to my girls because of doing this. And my sweet husband works and works hard to make a living for me and my girls. And I feel that it is my place to teach the girls and try and help out as much at home as I can.
After a lot of praying and discussing we decided to join Classical Conversations in the fall of ’22. CC seemed to be the perfect fit for my girls. They get an excellent education homeschooled with me and also that whole community experience. They’re learning things that I never would have dreamed of being taught in public school. We have the support and help from more friends and school family than we ever had and it is totally amazing. Just to give an example of some of the things going on. My 13-year-old (eighth grader) participated in a mock trial. It was really amazing! She played the accused. The kids performed this mock trial in front of a real judge in a real courtroom. It was an awesome learning experience for the kids.Choosing to homeschool gives you more opportunities than you think. They have dances, graduation, pictures, just about whatever you can imagine getting out of a regular public or private school, you can get that and so much more out of homeschool (preferably Classical Conversations in my opinion LOL)! It cracks me up when I hear parents get all excited about joining CC and their kids throw a fit and say, “Well I want the whole school experience”. And I get it, they don’t know. But you know what, the way schools are going and the crazy new laws; there’s no other choice for me. I love my kids too much and yes they drive me insane but I love the fact of knowing what is going into their head and being involved in what they are learning!It’s now coming on June 2024 and Maggie is now 14, going in the 9th grade and growing up way too fast for me.
Sofia is now 7 and going in the second grade.
I am 47 years old and honestly I feel like I am falling apart. I have recently had my hearing tested and it has been confirmed that I indeed have hearing loss. So my next step is to get set it up for hearing aids. I am having more trouble with my vision. This is one of the toughest things for me to deal with because I am an Avid Reader. When most people sit down and watch a movie for fun, my choice lately is to read a book. So never take what you have for granted, because you never know when you’re going to lose it!And the worst thing is I’m going through menopause and OMG these hot flashes are killing me!🥵 And you know what’s funny; I used to be the one who was always freezing and Mark was the hot one and is still like that during the day, but at night I am the one who is burning up and Mark is the one who is a bundled up but only at night! LOL!🤣🤣🤣
My hands are getting more drawn and won’t do what I need them to do when I need them to do it. It is so frustrating to get through daily life. But I know this is just more of me going through difficult trials, He has a plan and will see me through it! I have to learn to surrender my life to Him and let Him lead me!
My husband made an analogy that helps me remember why I trust in my God and why His plans will never steer me wrong. So this is how I think about things ever since I heard this analogy. So when my husband was working for Acadian Ambulance, and there was a call, the dispatcher would call the crew closest to the scene and send them. So one day he got a call and it was like 20 minutes away and so he was like,”why is he sending us when the independence crew is closer?” He actually asked that dispatcher why he was sending them and not the closer crew. So the dispatcher, obviously aggravated, told him that he sees the whole picture and can see what is going on over there even though you cannot see it. So that resonates me with me and even though I may not understand why I’m going through these difficult trials, He inevitably knows way much more than we could, so I always try and think about that when I just don’t understand why things are happening the way they are!