Middle School…..Time for me to grow up!

       Carthage Middle School. So different than Steadley Elementary. At Steadley, when Rachel Pyron walks in with her kids, everyone knows that I am bringing sweet kids. Ones that are obedient. Ones that will make their lives better. (Hopefully, unless they shock me, and break the record). I bring me, a “retired” teacher if you will, who knows what it is like to long for parental help.  Used to having the teachers just be so excited to have us close to them and to be able to have someone to talk to as the year goes on. The parent that remembers what drink you like and happens to bring it just on the right day. The parent that remembers you on birthdays, holidays and especially on birthdays.  The parent that doesn’t bring you just another apple mug (although there isn’t anything wrong with those). You know what I am saying. Just making sure teachers feel loved. 

        So here we are going to Middle School. The time I have dreaded all of last year. Scared for Lane that he would be bullied, and no one would notice. That the teachers wouldn’t understand that he isn’t like the other kids who are tough skinned.  The Middle school that I heard the stories of there isn’t any room for parental help. PTO isn’t as accepted as it is in Elementary. AGH! I don’t even know how to put that in my mind. I mean, come on, until last year,when I couldn’t get out of my house and do anything, PTO came out of my mouth how many times a day, week? The boys took pride even of their Mom being president, or whatever job I was doing. 

       I just knew these teachers were going to be old and their rooms would be cold and no decorations. because well it is time for them to grow up. My mind is screaming but he is just 10! They are seriously not ready for that yet.  Kids, in general adapt so easily. Mine doesn’t. But he does eventually. He needs to learn though, and hopefully it will go easier this year.  When I was a Special Ed Teacher, parents like me cracked me up some times. I always said ‘those parents’ were the reason their kids couldn’t adapt. Their helicopter Mom wouldn’t let them do anything. Everyone knows I am a helicopter Mom. I hover. It’s true. As Beverly Goldberg said “I’m sure you love your kids, I just love mine more”. (this is a funny show called the Goldbergs”) If you want to watch a show that will teach you about me, go ahead and you will constantly say, that is Rachel. The fear of my kids hurting..I even called Niki over to pull Lane’s tooth because I couldn’t stand the thought of hurting him. Correcting behavior is one thing, you know. I just know how special they are and want to make sure other people know. Guess what?I have learned, I don’t have to do anything for people to know how special he is. Lane does it for himself without even trying! Both boys do.

       The list of reasons I was scared for him to move on may seem silly to others, but my bubble is so cushy. It feels so safe. I knew I could count on every single person (well maybe not the custodians, but even the sweet cafeteria ladies) to watch out for my babies.

I could text the music teacher when I forgot to send a pop with one of the kids, because goodness knows they would die if they didn’t have a pop like the other kids.

The sweet nurse who calls when Lane has a stomachache, when really he just needed a hug. She just makes sure I know what the problem was. She let me know when they got hurt on the playground and needed a bandaid etc. She knew I just would know. My kids call me Mommy Monkey. I looked all over them to make sure they weren’t hurt or anything. She would make sure I was ok. She took them under her wing, when Lance couldn’t quit crying in Kindergarten.

The school where I can call a previous teacher to check on Lane to make sure he is doing ok in the next grade because he was struggling.

I can sit in the lounge with the cafeteria ladies and talk to them about their day, and be amazed at how sweet they are despite their jobs of trying to feed that many kids in such a short amount of time. Watching them in action. They would check on me, notice that I hadn’t been around in a while. They were even Scentsy customers.

The principal, who really is a PAL, just like they teach you how to spell P R I N C I   (then like the word PAL because he is your pal) which growing up I thought was hilarious. But ours, he has had to work with Lane on some issues. He and I bonded like Father and daughter actually, working together on PTO his first year as Principal and me PTO president.  Bonded over grief, his losing his daughter, my losing so many loved ones and family members. Feeling comfortable just asking the other to pray for each others pain. He loves his punkins, and you better not mess with them. DO NOT DISTURB LEARNING. As a PTO President I learned that you don’t plan events where it will mess up their day. I loved that.

      That Christian principal had good values too. He would follow through. I could email and say, we need to have a conversation, and he would make that happen ASAP! It wasn’t formal, it was what do we need to do to make this better. What do you need from me. Or the other way around.

      Other teachers in the building who know me. Who know my story, my concerns, my kids, my humor. What am I going to do going into another school where teachers might think I am psychotic? You know THAT  Mom who is crazy and has to be so controlling over every little aspect of their kids lives. I’m not. I let the teacher have control, I make sure that my kids understand they have to listen to them, because they are parents to them during the day. Of course if the teachers were mean, I would become that PSYCHOTIC mother, but it really isn’t going to be necessary. These teachers just know I am the mom to call when they need something. The go-to mom that brings it and goes, or stays if need be. I am friends with my kids teachers. I love them dearly. I would do anything for them. They have given 9 months of their lives for my child, and cherished them. Not sure about yours or anyone else’s but mine I know (just kidding teachers, I know you do it for all kids)

        I’m scared. My Steadley secretaries know everything. They have the inside scoop on how to do everything in the world! I am convinced, and you can’t prove it to be untrue in my mind. They take care of me. My boys are so loved by these ladies, it oozes out of them! The smile when they see the Pyron’s stroll in, whether by legs, walker or wheelchair, is so. well, smiley! From the moment I broke the best stapler putting up bulletin boards Lane’s kindergarten year, the sweet secretary just blowing it off, you had to know she was awesome! They call and say “Rachel, sweetie,  we need that form filled out. We have one waiting for you in the office. Can you get here or do you need us to mail you this one?” What she should say is “Hey we go through this every year! Your kids have to have a transfer form filled out and turned in at the same time of year each year! Do you want your kids to come here? Well do it, get it done and we will send this home with Lane because Lance doesn’t get things home quickly! Get this signed and sent back ASAP, or you will have to go back to your home school!’ See how sweet she is!

So this summer when I got Lane’s schedule and teachers names, I looked them up on Facebook. He was worried.  I was worried. Is this Facebook Stalking? Yes, I think so. It made him feel better to see their faces. To know they are real people. It made me feel better too that I had a jump on what they looked like too. See I am having a lot of trouble with memory now, and I am so afraid that I won’t know who these people are. The wolves I mean. The ones I am sending my little lamb into the wolves den.

      All summer long Lane would mention that he is scared, and it is my job as a Mommy to make sure he feels secure, right. That he is going to be fine. That the teachers are going to be nice. The kids aren’t going to be mean, and if they are there will be a bully thing in place where it will take care of the situation like at Steadley. (Dr. Barlow was on the look out for bullying in his school for bullying. He took extra care to make sure Lane wasn’t.) I must say one of my biggest fears for Lane is bullying. He is such an easy target. He is so nice. He is so tender hearted. He gets along with girls more than guys and not in a boyfriend/girlfriend way. Although, one day, these girls who do like him in a crush way and he is like his dad is oblivious, will be the one all of the other guys are mad at.  I have tried to figure out a way to tell him to kick the crap out of people who are bullying you and you won’t have anymore trouble with bullies. But I can’t. I wish I could tell him to say “When my baby brother gets bigger he is going to kick your butt!” Or say “My mom is going to be so so mad when I tell her and you don’t want her to know  you are picking on her cub!” Side note, few people have seen this rage, and you wouldn’t really recognize me. I wouldn’t recommend going to that place with me. And I wouldn’t do any harm to children, even if they were horrible little wretched children that needed a spanking!

      I forget that everyone doesn’t know my humor and how I make even more jokes when I am nervous. I started the conversation with Lane’s homeroom teacher following him saying his name and me saying mine “I Facebook stalked you!” His wife was sitting there with 3 kids. The look on their faces. Well here I am: Mom they have never seen, no husband with her, pink walker, telling them I Facebook stalked them. Oh dear. Now his wife probably thinks I am going to be that Mom that is going to try to hang around all of the time and hit on her husband. I haven’t ever thought about that before, until last night at Open House. It would be something to think about I guess. Him having to be there and Mom’s with kids coming in and if they were the only ones there with him. Well guess who is the PTO mom that is the one that is supposed to stay the whole time to talk to parents about PTO, yep that is me.  After I thought about that, “Oh goodness!” Poor thing. She came in with the boys mid way and she may have anyway. She has been at both things I have been at. But I hope she doesn’t feel nervous about this weirdo mom.  I am just the PTO Mom who is trying to do the best for his classroom. I did get a homeroom Mom for him, which should be a clue I wasn’t going to always stalk him or I would have been a Homeroom Mom too. PS I obeyed Luke and wasn’t the homeroom Mom. 

      Remember that I just realized my error of saying the Facebook stalking last night? I also introduced myself to the Music and Library teachers the same way. I just want to remember. Oh I want to remember. I still can’t. Stalking on FACEBOOK which means I looked at their pics, and looked at their names to try to put it in long term memory (yeah right) The librarian asked “Why?” I said “I wanted to see the wolves I was sending my baby to?” I was just scared. She said we aren’t wolves. She was hurt somewhat. I understand. But there are also rumors out there (but rumors shouldn’t be listened to, and there have been a change in “owners” if you will. So it is better. Later I was talking to them about the pizza PTO bought, and the Pyrons ordered and brought. They said they hadn’t eaten because they never do. They said “We do after, we are nervous too.” I hadn’t thought of that. I then remembered how frightened I was when it was time for me to have open houses as a teacher. 

     Wheeling through the school, I had to go all of the way to the end to use the elevator. I had to wait. I was trapped. My boy had to wait with me. He was so excited to show me things. He wasn’t embarrassed of me. I was for him. I wanted to jump up and run down those stairs. as I was just as excited as he was. I couldn’t wait to see the rooms. The band room. The music room. The cafeteria. But we wait for the key. It is a huge school, and Dr. Ragsdale can only walk so fast. I really like Dr. Ragsdale by the way! He has a great sense of humor! Good thing, and we get along and he didn’t laugh too hard when I said I was scared to drop Lane off at the Mix and Meet!

    We get downstairs, and Lane tells me he wants me to go there, “it’s just a few stairs Mommy.” “I’m sorry.”  I say. I realize at this moment (and when I brought pizza and the faculty lounge was in the basement type place and I couldn’t get down there either) that I am definitely not in OZ anymore, where getting places was easy, parking lots are redone to make sure wheelchairs can get up them better. Where you are instructed to call to make sure you get help to get in with all of your things. 

        The morning of Kindergarten, he hid in my robe. IN my robe. He was that small. We both didn’t want him to go. Last night he wasn’t scared. He got to do what he was looking forward to in so long. He got to choose a LOCKER! The joy in him was so cool! And guess what? Someone wanted to be a locker mate. Chose him. A friend, that was a boy! And I love his Mom! JOY for me!

      He is only 2 minutes away. He will be a million miles away from me. He is ready, so confident. He feels brave. Brave enough to get drinks by himself and go to the bathroom last night (“MOM this bathroom is so big, and cleaner than Steadley’s!”) I only have 2 more more days left to protect him. But I can’t protect him really, only God can. P.S. Who are the real wolves? The real wolves that I should be afraid of are the 5th and 6th graders!

In 2 days, my middle school boy will wake up, excited with a bit of nervous, and get ready for school. I will get up and try to not start crying yet. I will talk to Luke and the tears will then start. not the ugly cry. But this is the beginning of my boy growing up for real. I will drive 2 minutes from home. Wait in line forever I guess. And he will be on his own. A little guy in a giant school, a million miles a way.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        

         

Living without my Mom, living with MS. These 2 shouldn’t be in the same sentence.

Mother’s Day  is difficult for me. I want to always be positive for my boys. I am thankful to the little ones because they gave me the title of Mom. I cherish it. I really do. I am happy for the little one I didn’t get to hold, that he/she is in heaven being held by whoever, sad for my arms. But God knows best. Of course it was hard to understand at the time, but I also know there wouldn’t have been a Lance, unless God so decided. Because Luke and I decided on 2.

I know Mother’s Day is difficult for a lot of people. Mine, in my eyes, seems worse?  For the ones who don’t know the story: My Mom was ill. She had COPD, which she would have never called it what it was really. PLAIN OL’ Emphazema (how do you spell that anyway). She just didn’t want to have that, so she just didn’t in her mind, I guess. She also had Chron’s. That disease was awful to her body. I was a hospital warrior for her. Nurses just hated me. I think every hospital I have been to, nurses hate me. I just am determined that they will treat whoever I have in the hospital well. I don’t ask for much but when I do, I really expect you to get what we need. I will wash their hair, wipe their bottom (which one hospitalization I did more than I ever thought I would), get their water and ice. I am patient, I know nurses are so so busy, but my patient matters too. Normally it is for pain stuff. Never for jello.

The last time I was a hospital warrior for her was one she wasn’t asking for anything. We have to start a little before then. My mom had mentioned to a few people that she was dying. Not to me, of course.  And when I found out how many times she did, it was very frustrating. To be fair, my Mother in Law did tell me that she said that to her. I said, “She is being dramatic.” Guess I should have investigated that a little more. My mom had lost her job, her home was in foreclosure, her health sucked. She was done. I didn’t know what she meant when she said, “I need Grandma to hurry and die.” The reason… so she could. She didn’t want my Grandma to bury any of her kids. My mom was a unique one.

There is so much I have in my memory of the moments that really did seem surreal at the time before the funeral… of my Grandma between my Mom and I. I love how it is all etched in my mind. I don’t love how the bad stuff is etched in my mind as well. Our last precious moments together, was me painting her fingernails with Lane in the backseat of my Expedition. You know the white one. The one that is 10 years old now, and if I had it my way, would always be my car. The Cotton Pads to take off fingernail polish, what is left, is still in the side door of where she sat last with me. I didn’t have a chance to ride in a car again with her.They didn’t allow 2 people in the ambulance. But wait: that isn’t entirely true. I had her ashes in my passenger seat with me until September. I just couldn’t let her go. I would talk to her. And liked having her black box beside me. Chelsea, my cousin who was really close to my Mom, wanted a little bit of the ashes to put in a little box. My brother wanted half of the ashes. He was going to put them in Jamesport where her grandparents are buried. She didn’t want a headstone, and she didn’t want to be in Jamesport because she hated it there. But my brother got half of her, and away he went. It was windy that day, so when he poured them out, the wind started blowing them away! So he did what anyone would do…he poured water on her and stomped her down! She would have loved that too. Side note: She didn’t even make it to her own funeral. They hadn’t cremated her in time. How crazy is that? Probably because she died Saturday morning and the funeral was rushed to be held on Monday. For convenience purposes. Yeah, not my favorite idea now. I was just so numb, I did whatever anyone told me to do. I appreciate everyone’s help, but I wish I could have stood up for myself better. Oh well. it’s done.

True to form, Mom and I…we are walking past Grandma’s casket in the foyer before we walked into the auditorium. There was a card, she picks it up… I am so embarassed and said “MOM! You can’t do that!” She said “YES, I can, she is my mother.” Well it was a Mother’s Day card from my aunt. Anyway, we walked into the auditorium and those were the last words my mother spoke to me. Funny really. Why wouldn’t it be? We enter the row we are going to sit. She sits by Brian. I sit by, I have no idea who, and he answers his phone twice which made me crazy. But the children of Grandma all spoke. Lane was done long before the funeral was over!  He nursed still at that point. So we went to the balcony, he ate, then played in my purse,etc. I watch my Mom walk out. This was typical. She always needed inhalers. The alarms sounded when her friend came down and asked Brian to come out to the foyer. She then waved for me to come down. This was all so nonchalant. No need to hurry or anything.

Well my Mom was gray! Gasping for breath. Looking like she was already dead, and finishing up suffocating to death. I HATE CIGARETTES!  The look on her face. I see her sitting in that chair. I see all of the people not doing anything for her. Me screaming CALL AN AMBULANCE! Wondering why everyone was telling me that yes, she could breathe! LIARS! I couldn’t watch. I hit my brother and told him to do something. He said he couldn’t. I didn’t understand that. I had to leave to call Luke. I wish I would have stayed there with her. So insane of me. I said “I can’t stay here and let you do nothing” So I went to another room. Until I heard an ambulance and they were doing CPR on her! SEE I TOLD ALL OF YOU! No one ! NO ONE LISTENED TO ME! WHY? Why would no one listen to me! The best part was the funeral was still happening, They said “Please go out the side doors..Linda is having some issues” Or something stupid like that!  Really, so let’s keep going on with a funeral while my Mother is DYING! HELLO! Oh I can’t tell you how mad I was, maybe still am at times. I have had to let go of a lot of anger. A lot of anger towards myself too.

I told Brian to go with her, that I would gather his family, Lane, and get them something to eat really fast, and then go to the hospital. I needed it to be me really, now I wish I did. When I got there, we could go back there. When I saw her, I knew she was gone. Just a shell was there. But they hadn’t said she was, in fact a nurse said she was going to be fine. Please don’t ever say that to patients families. I had to be the one who told them she was having seizures. I am pretty sure they could see it too, right? That is when the warrior came out. I knew it was bad. Mainly because someone told me that the last words she said were “I’m going, I’m done, I will see you soon, Mom” My mom deciding that she was dying.

People came out of the woodwork to comfort Brian and I. I wrote down every single person, or had someone do it. And made sure we wrote down what they brought because I knew she would want to know, and write a thank you note to them. It was over 120 something. Amazing really. The week went on, the seizures kept coming, and it came down to the final brain scan. Was it or wasn’t it. Is there brain activity. I knew the answer. Brian and I had decided Wednesday that it wouldn’t be question. We knew what she wanted. Especially since she and I had this awkward conversation the morning of Grandmas funeral when she said she wanted to be cremated and spread at the foot of Jesus in Eureka Springs. I thought ummm OK that is awkward. I thought she meant at the Passion Play, I would have to run really fast and spread them during the play and try to not get arrested! No, she wanted me to spread them at another illegal place to do it. But I wasn’t caught so it’s all good. She meant the Big White statue of Jesus. A little different.

We tell everyone to come and say goodbye, we are taking her off life support on Friday at noon. A nurse gets frustrated with me because “we can’t decide that.” I promptly told her, that the doctor who is going on vacation, after Friday, said that their isn’t enough brain activity to keep her alive.  “she said what is the noon thing.” I said, “It is just when we decided.” It is my mother, and that is what we decided.” So it went. I had no idea how it would go. I was so scared of missing her slipping from me. I didn’t want to leave. They took her off, and when we came in she was breathing on her own. I was astounded! I said, is she going to be ok? Luke told me no, this is how it goes.

The Deckman family, we are jokesters. We do this to deal with everything. That and eat. She starts snoring. The TV in the tiny room is on, and Brian has some sports on. It was funny because Brian said, “Hey Mom, keep it down, will ya?” She would have laughed. The day went on. I couldn’t leave. I sang to her, read her scripture. I told her how much I loved her, and that I am thankful to her for so many things. I told her I will do my best raising Lane. I will miss her. I begged her to wake up. But like always, she didn’t listen to me. I was always the baby, and she was the Mommy. Mommies know best.

The struggle she had, became my struggle. How awful to drown in the end. I told her just to go to God, that I would be Ok. If she was staying for anyone, it would be for me. I lied. I wasn’t ok. There are days I am still not ok. Watching her take her last breath was awful. I laid my head on her, and then, she did a HUGE gasp! SCARED ME TO DEATH, well not really that, it was her turn for that.  Then I said to the nurse, “Is she going to do that again?” So I was kissing her and she did it again. That was my Mom for ya. She would have laughed so hard. One more thing, my mom didn’t like to be told what to do. We took her ability to breathe away on May 12, but she wasn’t about to let us win. She died May 13 around 12:30 am.

I didn’t think I would react the way I did. I knew it was coming. I signed the paper to do it. I held her hand. I knew she was DYING. When she was gone, I basically collapsed, and the screaming crying that came out of me is something that would have woke her up if she could have. The pain that I was in, is something she would have never allowed.  Or she would have tried to fix whatever it was that caused that much pain. Nothing was going to fix this. This was it. No more Mom! What?

WAIT! Now what do I do? I have a little boy, I have MS. I don’t know if it is possible to live without her. There is too much I don’t know how to do. I can’t cook. My boy, WHAT ABOUT LANE??????? No Grandma Bunny! He gets to live his life without a Grandma Bunny. She wanted me to have a baby so badly. I finally have one, and then she leaves. I am so mad at her at this point. I felt like she took her away from me. CIGARETTES. I know when it is your time it is your time. I also believe that when I use my cell phone while driving there is a greater chance I can die earlier, so I am pretty sure that using cigarettes didn’t help her very much. I struggle with that a lot!

Lance: Let me tell you something about Lancer. God sent him to me. I thought my Great Dane was going to help fill the hole, but that is another story. When I went to Tulsa for my Grandmas funeral, I only took one set of clothes for me. Enough “supplies” for Lane, and 1 days worth of medicine. All medicine, including the one that shouldn’t be missed if you aren’t trying to have a baby. May, along with the 2 funerals, Lane got pneumonia so bad, he had to go to Springfield to get a chest tube. (He probably got it from the germs I was bringing home from the “Death Floor” as I called it. May wasn’t the issue. June, well June, plus 9 months, and Voila, you have Lance.

I didn’t think I could have a baby without my Mom! Goodness! I told God, I couldn’t do it. I didn’t understand this. I wasn’t excited at all. But the day came, I thought I was going to lose him. I went to the doctor. They did some tests, and my little bitty baby boy, who was 8 weeks old, was ok! Then I told God, “Ok, here’s the deal, PLEASE don’t take him, I am excited, so I need to keep him, OK?” God agreed. Lancer has changed a lot of lives. My Mom would have loved his personality! His expressions, how funny he is. She would love both of them.

My life now, how MS is taking over my body, would be breaking her heart. She wouldn’t even know how to deal with it I don’t think. She was the one who was trying to think of every therapy I could try. She came and helped me when she could, and if I needed her, she did it even when she didn’t feel good. That is what Mom’s do, right? I had to tell her that I was doing better than I was or she would be so upset, more so than normal people. This disease, in her mind, was going to kill me. My brother would even call me and say, “How are you really?” I would ask what he was talking about. He said “Mom said that you were doing really bad, and I needed to check on you. She thinks you are in bed dying.” Really she wanted people to be as worried as she was. No one could be.

I feel cheated. I feel like at the age of 30, you aren’t supposed to be without your Mom. I know I am not the only one doesn’t have a Mom, or has one who is alive and they just plain suck. I wish I could talk to her again. She always talked forever it seemed. So many things to say. The apron strings weren’t cut until she died. That made it tough too. When you have one person who knows everything about you, who can sense things are wrong just by listening to your voice on the phone, I miss that. Now, unless I am crying, I can push my way through convincing people I am ok.

My mom wasn’t healthy. She wouldn’t have been able to take care of me at all. So I guess that isn’t what I wanted. Of course in an idealistic world it would be. I think what I am longing for is that one person to share everything with. I didn’t think we were that close. But I think we really were. She said I was her best friend. I didn’t think so then. Now that she is gone, I agree. When I was happy, I wanted to tell her. When I was mad, I wanted to tell her. When I was scared, or hurting, I wanted to tell her. I called her phone number after she was gone. It was just her voicemail. I still remember the number.

Her memory. I hate that in general people won’t speak of a person who is dead. Like I don’t remember that she isn’t here? I love talking about her. She made a difference in people’s lives. Yes I know she wasn’t perfect. But who was? Don’t you think she did something right? Brian is a minister. We lived in the slums. We could have been hoodlums. But we weren’t and aren’t. Brian and I didn’t do that ourselves. We didn’t just automatically raise ourselves. My Mom did. I want to think of good that she did. She was my biggest fan. She encouraged us to be better than she was. That was her goal in life, for Brian and I to not make the same mistakes she made.

I really miss my Mom. Last night as I was typing this, the boys could tell that I was crying despite my efforts to hide it. They are very concerned little guys. Lane said “Oh…You only have a few people left in your family…Luke snickered, and Lane said “Oh why did I say that.” I told him ” It was funny, it made me laugh. It is ok!” Then Lance saw that I was crying and asked “Why are you crying?” I said “I am just writing some things about my Mom” He said “Yeah It’s sad when you don’t have a Mom.”  That is the stuff my Mom would have loved. I loved it! She always said to me “Lighten UP!” It’s funny because I am a jokester. I learned it from her.I learned a lot from her. I really miss my Mom.

9 years ago…….we decided it was time to take her breath away.

Necessary Evil— Wheelchairs, all of the ins and outs of what it takes to be cool enough to use one.

My hot pink blinged out love, whom I can’t live without has, has sure been getting on my nerves lately. I guess it isn’t just a one woman show though. I am partially to blame. Although I drive a car well, my wheelchair and I still, after 2 1/2 years are still figuring things out.  I have really been noticing the damage that we make in our wake.  My house is taking a beating the most. That sounds dumb since we are in here the most. It also may sound silly me referring to it as a person, but this way I don’t have to keep typing wheelchair, and really as much time as I am with it, well people name their boats…

Many of you know I live in a older home. 50 plus. We love it. Well not the fact that it is on a main road which is what Lane and Luke will promptly say. Lane will say he just wants to move back home to his other house. He doesn’t like it here. But he gets to spend more time outside. There is no way I would have ever been able to enjoy watching them the way I do here. Plus the stairs, plus…the reasons we have, he knows and understands, but he still doesn’t like it. Lance doesn’t know any different. For all of you who don’t know. I had 5 stairs any way it was to enter my house. There was carpet in almost all of my home. It just wasn’t handicap accesible. Then there was it was all electric, the power went out all of the time, it smelled like chicken poop alot, so the boys wouldn’t go outside. But the main reason was the accesibility.

At this house, it is all wood floors with the exceptions of the 2 rooms that were added on, but they aren’t big, and I don’t have to use those daily. We do have area rugs, but those can be pulled up if we need them to be. There is 2 steps to get in from each entrance. We plan on ramping one of the entrances soon. BUT like I said this is an older home. The doorways aren’t very wide. And the kitchen cabinets haven’t been updated. The kitchen is so what is the word, Lynne, quaint. It is all white. Perfect for my little Cupcake decor. I don’t necessarily want to take them out because they would mess it up, but I may have to. But here is what my hot pink friend and I are doing to it: They must have repainted it because we have hit the cabinets so much that we have found that there is a sage (yuck sage) green underneath, and then under that it is wood. So if we sanded it down, we would only be taking off 2 colors. At least the hot pink one and I figured that out for us. We have fortunately done this to all of the cabinets. Mainly to the sink ones. That is where we are at the most obviously doing dishes.

The doorways are taking a harsh beating too. My knuckles then do as well. They are tight corners though, so at least I have that excuse. But I do have another couple of helpers who are attributing to those doorways being roughed up. One has blonde hair and one has dark brown hair. The older dark brown haired is an excellent driver. In the house and the driveway. (if you can names this movie, thank you for being as old as me!)

Oh the bathroom. They are updated. Very thankful to have double sinks in the master bedroom. This is where I need a pedastal sink. The wheelchair just has to be sideways which makes it a bit difficult brushing teeth and taking off makeup. Water kind of gets everywhere. Niki Cloud watching me do this, she was outraged. But replacing cabinets in there isn’t in the plans. I really could just go in the boys bathroom…..and it isn’t that bad in there. During one bath time, Lane made a commercial, he said, of how to make a bathroom sparkly and clean. This is a great way to prolong bedtime you see. This was a one time deal though.

PUBLIC…..ARCH NEMEMIS…..BATHROOMS!…. Bathroom doors. Getting in and out of those things, NIGHTMARE! I mean the in and out door. They are the heaviest doors ever. It is a pull door. You have to have some arm strength to get that sucker open. If you have a bag too, have fun with that. (Thank you Northpark mall for not having one!) It is just so awkward for me. Then coming out. You have to push it with your feet (what happens if you are completely paraplegic?) to get it open, it slams back on you. if that pulls then you have to touch it with your clean hands, yes, I carry hand sanitizer, but you know what I mean. Anyway moving on to the stalls. Guess where the Handicap stalls are? All of the way to the back. Have you ever thought about why that is? Me neither until I needed it. I can wheel there now, but when I walked with a walker or cane, I thought, I will wet myself before getting there. I do feel sorry for the people who have to transfer from the wheelchair to the toilet. They are cooler than me. I can stand at least. But this may be uncomfortable for some, so I won’t talk about pottying anymore. I just think that people think handicap accesible is good enough, well not so.

One more thing about this, and this deserves its own sentence. please teach your loved ones this. Please don’t use the Handicap restrooms unless you need it. I have waited for one only to see people who easily walk to get out of one. Luckily I am able to hold it. A lot of my MS friends, are unable to. And actually do wet themselves, or worse. Once they have to go, and I pray this doesn’t happen to me one day, they have to get pants down, transfer from the chair, and then go. It takes a long time for us. And be patient. For some, including me, sometimes, I am unable to start urination, and finish. It is just one of those fun MS symptoms. I am completely ok for people to go and leave me for a while. It actually makes me nervous to know people are waiting. I never thought I would have to tell people stuff like this. And at just 40 years old. Oh well potty stuff is just potty stuff right? It is just like a toddler now.

Being short now. When you have been the tall one all of your life, you know the one in the Elementary class picture that was in the back. All of the way through high school, “Ok Rachel, you are in the back” which I totally didn’t mind. I was also the one who people needed to reach things. I could change light bulbs, sometimes depending on where it was, without a stepladder. Now that is just a superpower right there. I liked being tall. Have you seen my brother? It would’ve been miserable if I was short. We liked to hold hands and skip in college. That wouldn’t have been as much fun if I was shorter. I am almost as tall as Luke, although when I stand up now, I am shrinking so it is better for him. He is very secure in it, he doesn’t care. He figures, he has me as his wife, if people have an issue with it, oh well. He thinks that about most things, doesn’t he? I like that about him.DOWN SIDE… PANTS. but now they have super long jeans, and that is why I wear jeans that are way too long because I have always wanted to wear jeans that were just like the short girls.

Back to the subject.

Being in the wheelchair has put being short in a new perspective. First, I see why kids get so overwhelmed and want to be held. They can’t see, they are getting trampled by legs, by feet, there are swinging arms, and hands that go back and forth, people are not watching where you are going. You are ignored, and are a nuisance, and people look at you that way when you are in the way. Not all people of course. One more thing, and I am being serious here…they have to smell butts. Getting smashed by carts is no fun either. Not being able to reach a fun thing, well boo on that.

But for me as an adult, being short, in a crowded area, I am waiting for a chance to go, because I don’t like to be in the way. I am not loud enough to say excuse me, and if I were to become that loud, I sound like I am yelling. When people are pushing me it is hard for them to see what is happening on my level. I see when people are getting ready to stop. So I try to stop with my wheels but the people pushing me are stronger, so I stop with my feet underneath the wheels. It is just too loud for them to hear me too. For those who have known me in the past, and know how very loud I used to be, MS has taken away a lot of my voice too. It doesn’t sound funny, but it is just soft now. So thank goodness I used to be obnoxiously loud huh?  People not paying attention to me, and not letting me through, well that makes Luke very angry. He starts to push his way through. But Brian, he becomes the Incredible Hulk when he sees this, and he will like push people way out of the way. I don’t know what his face looks like but people move fast when Brian is pushing me, and he pushes me fast! But I get to where I need to go when Luke and Brian are pushing me.

I like to look. I also feel bad for all of the times I didn’t let the boys look at stuff. Stores put stuff on those shelves for a reason (jerks). The stuff on those shelves are the most beautiful. I know people are in a hurry. Friends, family, and I don’t like to be a burden. So I only glance quickly. but I really wish I could shop again. Not clothes shopping, Jill. I have so many other things I would rather do than shop, but isn’t Target’s little dollar bins fun to look at. Although, I haven’t been bringing a whole lot of junk home that I had to have and didn’t need.

Embarassing. Well my wheelchair isn’t embarassing to me anymore. At first, I would rather stay at home than go anywhere. Then, instead of staying at home when the kids needed something or I just needed to, I wouldn’t look people in the eyes, Or if they were looking too much I would just stare back. Now, it is just something that is so normal to me. I forget that it gets stares until they are just so obvious. It still doesn’t bother me anymore. My favorite are from kids. I don’t mind it because they are intrigued because it is different. I feel bad for them because their parents are trying so hard to keep them from it. Don’t keep them from it. Just ask. Especially if it is someone who looks inviting. I am smily and not gripy and would rather you ask than stare. I know most people want to know why I can get up and move into another chair etc.

My boys being embarassed. They normally aren’t embarassed. Actually they are the first ones to try to help me. Lane the other day didn’t want me to take him to cub scouts. It made me so sad. I don’t know if it was because of the wheelchair, because of the MS, or what. It still broke my heart.  It wasn’t because of the whole, ‘ well he is just growing up thing’ because he knew I wasn’t going to go in his class with him. Anyway, it isn’t an issue, I am surprised they still want to hang out with me at all. The other day we went to the mall by ourselves. We had a BLAST! It was so much fun to just be normal. This is their normal. We don’t expect any other normal.

     TOP TEN REASONS WHY I LOVE MY WHEELCHAIR

10.Get to park closer in stores, sometimes. Walmart is tricky, I have to compete with a lot of older people who do give me nasty looks for parking in their spots.

9. I always have a comfortable seat to sit in.

8. My seat isn’t disgusting to sit in.

7. At a restaurant, when it says Wait to Be Seated, I don’t have to obey that sign.

6. I don’t have to carry bags, I just put them on my lap.

5. My shoes don’t get as worn out anymore.

4. I can take blankets places because I am always cold, and I don’t look weird.

3. Even before I had MS I used to trip all of the time, now I just crash into things, with my chair, and not my body.

2. If my butt and hips look big in a skirt, no one knows.

AND the number one reason being in a wheelchair is worth it….

1. I get to be a part of the world, and a part of my kids and husbands life.

Friends….

I have always had a lot of friends. My mother taught me how. She had a lot of friends, but that isn’t how she taught me. I wasn’t fond of how she taught me. She always made me go up to people and introduce myself, and try to involve them in my group, or whatever I was doing. She taught me how to read people very well. She could read people so easily. My face never could hide anything from her. But I learned how to hide it from everyone. I am talented that way. 🙂  I won’t go into the training anymore, but I will say this: I am glad for the lesson because it taught me to be who I am today with people. I want to be around people. I like to know who they are. I am not afraid to meet anyone. I know that everyone has something to talk about, they have a life story that is amazing. There isn’t one person that doesn’t need a friend.

Sucker. I have always been led by my heart. I didn’t learn from my Mom that you have to be careful with people, that you can be nice, and caring, but you have to be on guard at first. Not everyone becomes your best friend right away. I have always struggled with that. I give of myself too easily. I don’t even have a guard up until the initial blow. Then it is up, but the friendship isn’t broken. But should it be? What is a friend? What is an acquaintance? I have a hard time telling the difference. I am learning the difference as I am getting older and my eyes are getting clearer that way.

I am also sad to say that I have observed that since I am not around like I used to be, lots of people, aren’t around like they used to be. So acquaintance? I guess. Who knows. Does it matter? Really it doesn’t.

I have also learned how many friends I do have. More than most. I wish I could post on FB everything that is done for me. I almost feel like it would be showing off. Niki Cloud….It is almost unbelievable what that woman does. I should just write a journal of the things she does. A servant of God. A friend who doesn’t ask anything in return. Who just is a true friend. Have we hurt each others feelings? Yes. Forgive? Of course. That is what friends do. That is what Christians are supposed to do. We are more than friends though. Our bond is sisterly.

I have more friends, my college friends. The ones who I have known so long. We have gone through a lot together. The kind you pick up where we left off kind. The kind that runs to you when you are hurting. Where you laugh so hard your stomach hurts. You cry so hard together that your eyes can hurt.

Tonya, the one that we can be far away and still get the same hair cut without knowing it, buy the same type of clothes, basically share the same brain. Even got married on the same day, at the same time. We look like sisters too. We think we may share the same dad (just kidding). But we have been through the toughest times of our lives together.

Tara, Amber, Carolyn,Jennifer, Jill, Jenn,Jeanie the list goes on and on of the ones in my world my town now. And what did I do to deserve it? God just knew I would need help in this world. Let’s talk of my best friend in the whole world, Luke. Well let’s just say, he is and he is amazing.

When making a list of friends, I always worry about hurting people’s feelings. You know it does. Hurting my friends is the very last thing I would try to do, and yet, I still do. Why? I don’t return phone calls, get to emails fast, don’t text back. I forget. I honestly forget. My brain sucks. I don’t know how many ways I can say it. My brain is messed up. I forget to. If I am texting someone, and I get another text, I have to close it so I can finish. I may forget that I had another text. I don’t do it to one friend. I do it to Luke too. Even when he asks me a question that he really needed to answer. I can’t help it.

Excuses: Why do people make excuses? Well I used to always say, I don’t like excuses. Just make it right. Well I need excuses because I need to help people understand why I didn’t do it, or why this, or why that. I want to be a Mom. I want to do things with the kids so that they don’t just remember me in my brown recliner. They know I forget things. That I am too weak to sit at the dinner table, too weak to do anything in the evening but go to the bathroom, and that with help of Daddy. I want to help them do something. So making a phone call, may not be on my agenda. I may be talking with them, reading to them. Or whatever. I like to spend an hour with my husband. He is exhausted from doing everything. Now sometimes I don’t mind. This isn’t everytime, I am just explaining some things.

This sounds so crabby doesn’t it? I guess I just feel like I have lost friends over MS. I have lost friends over this. But my friend, Cid posted something the other day that something along the lines of I would rather have 4 quarters over 100 pennies  (meaning I would rather have 4 good friends than 100 just acquaintances. ) I deleted over 100 “friends” on FB the other day. I know they didn’t notice and I don’t really mind. They were only on there because…well I went to high school with them, or whatever.

This is going to sound conceited, but the people reading this and know me will know I say this: I don’t understand when people don’t like me, because I am Rachel, and I am not mean to anyone. UNLESS YOU JACK WITH MY KIDS, and then I am going to hurt you, and because this online, I can’t say what I really wanted to say. But I want to go to heaven bad enough to not do that anyway. But I wouldn’t recommend it. I also wouldn’t recommend hurting my friends and family.

LOYALTY  I would say that is a characteristic of me as a friend. I love you my friends.

Cupcakes, Daisies, Puppies, & Wheelchairs?

What kind of blog site is this? What a ridiculous thing to say. When you are me it isn’t. My life when it isn’t ravished by this ignorant, debilitating disease, is filled with happy. Cupcakes, oh how I miss baking you and frosting you Cupcakes, my old friend! I don’t cook well. Everyone knows it. I just don’t like failure at all. I look at cooking as failure. I have messed it up enough, that I associate it with pain. Baking: Well I have always been named the Baker of my family when I was little. You become what you are “supposed” to be. Brian, my brother was named the cook, and look at that, he is a fantastic cook. His list of fantasticness goes on and on. That is another blog all by itself. Cookies, I nail cookies! I nail cakes, I nail pies. Brownies, you know the good stuff, that makes me fat. But Cupcakes. Those little things, they just make me happy to look at.

Daisies, how pretty you are. My favorite flower. Both Gerbera, and the cute little white ones. Maybe it just represents being able to be out in the outside, in the place where everyone else is. Maybe it is just so colorful. I love colorful. I used to be colorful. Pink and Purplse, are my signature colors now, but Red used to be my favorite. But whatever, just alive colors. I don’t pick them, I don’t ask for flowers, they die. I named a dog Daisy. She was hit by a car, I cared for her and she was a good dog. I won’t speak of her departure from me. She was alive when it happened. But it is a sore subject and doesn’t belong here.

Oh Puppies, how I am thankful for my puppy, Paisley. Without them, I think my heart would shatter. I have lost some, and it has broken my heart. But losing Roly Poly, has left a giant hole in my heart. It is closing, but I am not sure it will ever close all of the way. But oh how I wish I could have a puppy to train, to take to obedience school. To take to agility training. I had a Border Collie once named Belle. She was so cool! She had so much energy. I took her to obedience school which she didn’t like. BUT when I took her to agility training, I didn’t even have to teach her much. She just did it all! SHE LOVED IT! Then the accident happened. Long story, and she went and lived with a family, which I should have never sent her away, and another story that doesn’t belong here.

All of these things, well I realize how much loss Multiple Sclerosis has taken from me. I never let my true feelings out. It is to protect everyone else.The people who love me just can’t handle it. If they see the true Rachel, and how I feel, here is how it will go: Family: They will be so sad. Not know what to do. Get tired of listening to the gripes. Just stop listening.  Friends: At first, they will be glad I am getting it out. They too, will be weary of the complaints. Won’t understand what I mean. Start fading away because they realize that nothing they can do can take any of it away. They think that they have failed in doing what friends do, or so they think, and eventually be gone. Some friends have been my friends when it was convenient, well that was because I did things for them, and it was the right thing to do. To “Payback” if you will. I will still have the few friends who have been there from the beginning. That will be there until the end. That will listen, and then say, so let’s find a movie on Netflix and eat Pizza. They know that I won’t stay that upset forever.  I am so overwhelmed now with these emotions after 14 years of holding it all in, that if I don’t let it out, I am going to explode. I can’t hide them anymore. I can’t be happy all of the time. Outside “Friends”: You know the kind, they say, let me know if I can help you. They know I won’t ask. I know they know I won’t ask. It is a nice gesture, but if I did call, it would totally shock them.

Oh Wheelchair…that’s right, you are with me aren’t you. But what would I do without you right now / One of my best friends!. When you are far away from where I am, I get a fear that wells up inside me. As if I might fall. When I roll you around the house, I hit my hands on the walls, furniture, and I have cuts on them, bruises that won’t go away because they are constantly getting hurt. My arms, they aren’t strong enough to push me where I need to go whether it be in a store, into the kids school. But in the kids school I do it. Then it wears me out. And when I say wears me out…it isn’t like everyone else’s wear out. Noone gets it. Oh wheelchair, you are so very heavy to lift into my car. The obstacles we have together, I don’t want people to know. I am tired of people saying I should have gotten this kind of chair, this kind or that. I got the one I needed at the time I needed. I still need you more than any other thing during my day. The looks and stares used to bother me terribly. I felt like everyone’s eyes turned my way. Now alot of people’s eyes gazed too long. But now it isn’t even an issue. It bothers others more than me.

I am stuck here with my friend, my friend with 4 wheels. It really is easier to just hang out at home. It takes so long to get shower, get ready to go anywhere. I need to go back and list everything that I do that takes energy out of me. Get out of bed. When your legs don’t work right. You have to use your arms a lot. If your arms aren’t strong, you can figure out what is next. So you do it. If you get out on one side of the bed that is closer to the bathroom you don’t have the wheelchair. So then you have to get back on the bed (it is taller so it takes effort) or walk around which if you were in a hurry to go to the bathroom you forgot to get the phone which you have to get. You pick up your clothes on the way over. I know this isn’t proper grammar and I don’t care so if anyone who is reading this does, sorry. So moving on. Normally I get track pants, and a Tshirt. I normally make sure they match at least. It is just easier for my hands to not have to button and things like that. It’s the little things that normal people don’t think of that adds up for people think of.

When brushing teeth, you try to multi task as much as you can. Getting out the Grandma pill container for morning which is a huge amount but only half of the nighttime medicine. I am so thankful to my husband for filling my pill containers. I am the best at swallowing a dorkload of pills! I would be waterlogged if not. I have put my shower chair into the shower with the water warming up.  I have horrible balance. Showers scare everyone. Even the kids are nervous when they hear a big thud from my bathroom. They come running to make sure I am ok. Washing my hair and conditioning is a job, and that is why I keep my hair short. I would like it to be a little bit longer but it just is more practical this way. So I finish up. Brush teeth, hair dried, makeup if I really don’t mind using a spoon on it or really need to get out. If you are so confused why I am saying all of this part. It is something to know and understand someone who has Multiple Sclerosis and what symptoms they have. Not to have pity on me, just so I can say a certain thing, and I don’t even know which thing I am struggling with right now.

I have so much in my head to say, but I think I need to just try to stay on topic. So now the title is now explained, plus more.

BLOGGER? WHAT?

So I had to go ahead and start a blog because I type too much on Facebook. I don’t necessarily need people to read this. I have to get all of this nonsense out of this head. MS brainfog is ridiculous I have to say. So you never know what is going to be on this blog. Brace yourselves everyone. You are entering the Pyronzone!