Sickness and Death: It Sucks

Sickness and Death:  It Sucks

     I don't really know why I write this blog, except it is somewhat cathartic when I experience sadness or heartache.  I am able to write my sadness and tears into an oblivion at times, so please understand that I can get emotional as anyone can when someone I love is gravely ill or dies.  I have learned over the years that as a Christian, it is comforting to know that my loved ones are in Heaven and are always with me.  That being said, I have never liked illness or death.  Who does?  The first time I felt at a loss to convey my feelings except cry was the death of a very good friend, Chris Garrett.  Chris was a gentle, loving, and kind soul and he lost his battle with a rare form of cancer at age 19.  Cancer sucks.  Nobody should have to experience cancer.  I had seen my mom very sick on a weekly basis when I was 13 years old, but she kicked cancer's butt.  I am now 40 years old and my mom is still here.  I can say my mom's stubbornness, my grandparents (her parents) faith, and all of her friends being there for her is what saved her life.  I can't say what saved my mom.  There are so many people that fight cancer every day, but lose their battle way too soon.  If I had to say why my mom lived, it is because she has a strong faith and she was on so many people's prayer lists.  Cancer sucks.  I witnessed this horrible disease on a daily basis for three years.  My mom had stage 3 breast cancer.  My aunt Cleo was not so lucky.  She tried radiation after her cancer diagnosis.  We lost Cleo within 6 weeks after her cancer diagnosis.  I still have trouble thinking about Cleo's death, simply because we lost her too soon.  Each year on August 9th, the anniversary of Cleo's death, I leave a flower for her on her grave every year.  Cleo has been gone since 1990 and I can say it has gotten easier through the years, but that loss is still there.  I had many great people in my life and I consider Cleo one of my moms.  This is why it is so hard to write this next paragraph.  I am losing another mom and it hurts.  I can't stop crying, I pray for comfort, but most of all, I pray for this amazing woman's family, who has become a second family to me.  This family and woman was there for me during my hardest time in life:  my mom's fight with breast cancer.

     I am on of those lucky people that had an amazing support group of friends and family when my mom was sick.  My mom is incredible.  She would come to every single game I played in at J.L. Long Middle School.  The next day, I knew she was tired and sick, but my mom always managed to get me and my brother fed breakfast, have a lunch packed for us, and get us to school on time every day.  I know this was no easy feat, as I still have a hard time getting up, getting Cole ready for school and out the door on time (semi-awake after two cups of coffee for me)!  The main reason I am the mom and wife I am today, is because I have great role models.  That second Momma to me is still my second Momma.  Her name is Armelia King, but I called her Coach.  Coach King was a lot of everything to so many people, but to me she was Momma.  She was there to pick me up when I was down.  Coach King was the one that stood up for me when she found out that certain girls were telling me, "Erika, go ahead and do yourself a favor.  Kill yourself, because you know your mom is going to die."  Yes, there were bullies, horrible girls, and nasty comments that were uttered to me at my middle school, but I had someone that always had my back:  Coach King.  I know many of my teammates (actually all of them) would agree that Coach King was more than a Coach:  she was a mentor, role model, amazing teacher, and the backbone of J.L. Long Middle School.  I always knew if I had a problem, I could go to Coach.  She was my rock, my protector, and my momma.  She didn't play, she didn't take no for an answer, and she didn't cut us any slack.  She had gone through hard times, but she never told us or showed us what she had gone through.  I know raising a son with autism has been hard, but I only can wonder how difficult it was raising three girls by herself without a husband.  I guess I can imagine it, but I know it was hard.  Coach King exemplified grace under pressure and she exemplified true grit.  This is why it hurts so much to see her suffer.  I am amazed by her spirit and the life-long impression she has left on my life.

     I feel writing about other topics in my blog lets you see the human side of me.  I hate death, I hate sadness, but most of all, I hate it when Cole sees me sad and crying.  I am fine right now, but even the smallest thing can get me crying again, like a Geico commercial!  I love hard, I love unconditionally, and I am thankful for the relationship I have had with Armelia King for nearly 30 years.  Coach King was the main person that inspired me to be a middle school teacher.  Ms. King was the most amazing Coach, taught me how to "press" for the first time in basketball, showed me how to play defense like a guy, and she taught me the true meaning of life.  I love this woman and Dottie, her youngest daughter.  Dottie and I have known each other since 1986, so we just get each other.  I pray for Dottie, as it is so hard for her to see momma slip away.  Dottie is crazy, so I guess that's why we get each other!  She is a wonderful friend and mom, and I am blessed to know Dottie.  I know if it had not been for Facebook, I would have never reconnected with her or Momma.  I am so glad I found Dottie and she found me.  We are relying on each other and I am so grateful Dottie takes the time to text and call me about Momma.  I am getting to know Coach's oldest daughter, Angela, and she is so much like her mom.  Angela is extremely smart, has Coach's smile, and takes care of business!  There are so many other family members that I could list, but these two women, along with Coach, are like my family.  When Coach dies, I pray that comfort and healing begins for everyone.  

     Coach has been sick for quite some time now, so she is not the same as I remember her in 1986.  I remember Coach as a strict disciplinarian who didn't take crap from anyone.  She no longer is the strong woman I remember.  She has suffered strokes and now has a weak heart that can only be treated with medicine, so that is what is causing her to slowly slip away.  My memories are packed away in my sub-conscience, so I am grateful for these memories.  I long for that day when Momma is released from her pain and suffering, because she deserves it.  Nobody knows when it's their time, but I know when Coach leaves this Earth, she has left a permanent mark on my heart and mind.  I am saddened to experience this pain, but I am thankful for my faith, my strength, and my pure love for this amazing woman.  Coach Armelia King is more than a teacher, Coach, and friend; she is a Mom and Grandmother.  Her legacy lives on in all of her kids.  I am one of the lucky ones; I get to say goodbye.  I don't have any regrets.  She was and always will be, Momma and Coach.  I miss her, I miss her laughs, but most of all, I miss Coach.

     I didn't mean to make you cry, so I am sorry about this subject.  I find writing as a way to express my intimate feelings, happy or sad.  I feel this is a kind of a release of my anxiety to pen this post tonight.  I take comfort and can smile just a little, knowing that I can find peace in my memories and in God.  I don't know what I would have done without Coach.  She was there in my most formative years.  I can only pray I can do the same for my son and his friends.  Time will only tell if I have made a lasting impression on Cole, our friends, and my former students the way Coach King has left on me.  Coach, I love you.  You have always been in my thoughts and prayers.  Heaven will be a much better place when you arrive.  I am one lucky woman to have had you as my 7th grade science teacher, volleyball, basketball, and softball coach.  You saw my potential, made me a great athlete, and helped me pursue life with fire.  I thank God for you and your family.  You saved me from what could have possibly been the worst time of my life, and for that, I will truly be indebted to you.  Thank you for helping me become who I am today.  I am at a loss for words, so thank you, for reading this tonight.  In the words of a friend, may our friendship stay dear and Vaya Con Dios....

Idealistic Goals vs. Reality

Idealistic Goals vs. Reality

     I have always tried to give myself a goal each year, accompanied with a view of reality.  I love my son beyond words and would give him anything and everything to help him become independent.  The way I describe independent is much different than anyone's point of view, if you don't have a child with autism.  Our journey has been a long one to get to the point where we are in life, so please don't judge me or my family.  I have had a lot of cheerleaders helping me, Cole, and my husband when it comes to the idea of being completely independent.  I won't lie; the first eight years of Cole's life were a struggle for me simply because he didn't speak or tell me what he needed or wanted.  I felt, at times, like throwing my hands up and throwing in the towel.  I wanted to roll up in a ball and cry many times (and sometimes I did), but my stubborn will to give Cole a voice and help him navigate in this big, bad, enormous world of uncertainty made me strive to be the best mom I could be.  I had fights with people over what Cole needed.  We changed pediatricians three times until we were all satisfied (beyond happy with our current doctor and staff).  We also tried a developmental pediatrician too, for Cole, which was just not a good fit.  

     You have to find the right fit for your child and you, simply because you are going to become friends with this person.  I liked Cole's first pediatrician, but after I started questioning his perspective in terms of a diagnosis of autism, I clearly became "that parent".  I clearly remember Cole's pediatrician asking me to write down the words Cole said at age 2.  I wrote down words that I thought I heard Cole say (actually mimic a sound), and his doctor took that as, "Oh he's fine.  Boys usually are slower at doing things then girls, so he probably just fits into this category of a slower talker."  I knew at age 2, Cole was not progressing the way I thought he should.  I also knew that since Cole had had 12 ear infections in one year, this could be slowing up his progress to talk.  I would hit my head against a wall just trying to figure out why my son didn't talk.  Looking back, I thought I talked too much and this was the main reason that Cole couldn't get a word in edge-wise.  Seriously, I thought in my head, "He was slow to walk--17 1/2 months, so maybe he's going to be a slow talker."  As a mom, you know when something is not right with your kid-- it's that inner gut feeling.  I knew Cole was different, but I also knew he needed help that I couldn't give him.

     Fast forward ten and half years and my kid does not shut up!  I fought long and hard for Cole, and I still do.  You have to be your child's advocate.  You must be their voice, simply because if they don't have a voice to advocate for themselves, you need to step up to the plate and be that parent who questions doctors, nurses, and therapists.  I only have a bachelor's degree in music, so I didn't know much about medical issues.  Make Google your best friend.  Please know, we have great doctors now, but it's not because I settled on just one.  Do the homework, find that right fit for your child, and also question their perspective when it comes to treating a child with autism.  I had many battles with Cole's first pediatrician, simply because he didn't think Cole had autism.  He blamed Cole for putting play-doh in his ear at age 8, that  caused his ear infection.  We didn't have any play-doh in our home, so I just it happened at school.  Do NOT ASSUME all doctors want to treat or know how to treat a kid with autism.  My last straw with this doctor was when he told me to treat Cole's staph infection with bleach.  He could sit in a tub of bleach to get rid of it, or it would go away at puberty.  Cole was 8 YEARS OLD!  There was no way that I was going to put Cole in a tub of bleach to get rid of his staph infection.  I knew then I was looking for a new pediatrician for Cole and for me.

     Cole has always said when we go to the doctors "No shots and no needles."  I questioned my sanity at times, because he was (and still is) a broken record.  Cole is terrified of needles and shots, but he gets that from me!  Yes, totally embarrassing moment, but when I was 14 years old, I had to get a gamaglobulin shot because I was exposed to hepatitis.  I cried all the way to the doctor's office, ran away, stole my mom's car keys from her and drove to my grandparent's house because I was terrified of needles.  Once they found out that I was terrified of needles and shots (yes they had to pry my hands off the door to get me in the door), they tried to coax me and put me at ease.  I HATE needles.  I always have, but as an adult, I realize the need for shots and needles.  Explain to me at 14 years old that I have to get a shot, simply because of some girl that has hepatitis.  I could ride the tallest roller coaster at Walt Disney World, but tell me I have to get a shot, I would cry like a baby.  Sometimes, I think Cole acts the way he does is not because of his autism-- it's because of me!  Those characteristics and traits that I had as a child and now an adult is similar to Cole.  We literally could be the same person at times.  He loves to sing, I love to sing.  He loves to eat. I love to eat!  Again, you know your child better than anyone.

     I am one of those parents that questions a lot, in terms of life.  I was always inquisitive in school.  I asked too many questions in school (I even got called into one of my SMU music history teacher's office and was scolded, because I was supposed to let others ask questions in the class!), but I have always believed that the more we question ourselves and the world we live in, we become deeper and more meaningful people.  I strive every day to help Cole with his independence.  We have two chore charts for Cole and these help tremendously!  I have to remind Cole to look at his chore charts, but once that pattern is established, he gets it.  He knows to take his dishes to the sink.  That is huge for me and for him.  He knows how to get dressed, where to put his dirty clothes, how to brush his teeth, brush his hair, take his medicine, and take a shower because of these chore charts.  My kid may not be comfortable staying home alone, even if it means I am outside talking to a neighbor, but you can believe I am doing my best to help Cole achieve total independence.  I pray each and every day that he finds his way towards total independence, because ultimately, this will complete me as his mom.  Nobody can explain how to "cut those strings" when it comes to being totally independent from your child, but as Cole's mom, I think I am doing a great job!  I don't want to send Cole out into this world wondering, "How do I do this?  My mom can do it for me."  I realize that I am 40 years old and I am not getting any younger.  Cole needs to be independent, not just for his sake, but for my well-being too.  I was given the wings to fly and to become independent as a teenager, but as young adult, I found myself yearning to stay at home.  I was comfortable living with my parents, simply because I knew they would always be there for me and Cole.  This was an easy way out to say "You don't need to be independent because I can help you."  I always yearned for my own place, with Cole.  That never happened.  I feel more independent now that I am married, simply because my wonderful husband gives me what I need.  He is a terrific father, but most of all, the most amazing man I could have ever married.  He gave me my independence, as well as Cole's.  I love this man and would marry him a thousand times over, simply because he is that wonderful.  Now don't get me wrong, I love my parents, but I needed to have that independence, even if it was just for a year.  I am blessed to have great parents, so please don't take this as a dig to them.  I don't know what I would have done without their support.  However, make sure before you decide to get married, have children, and live "happily ever after", you know who you are as a person.  It has taken me 40 years to figure out who I am and what I have become.  I love teaching, I love music, I love to dance, but most of all, I love my husband and son.  

Summer vacation and autism!

Summer Vacation and Autism!

     

     Obviously, it is now summer and I thought I would write while I was vacation.  I didn't write while I was on vacation, simply because I didn't want to take away valuable family time!  I love my family and it's hard to balance work, a personal life, and some quiet time with my husband so I relish the time we get while on vacation.  We still act like we just met (we have been married for two years), and I am beyond blessed to have this wonderful man in my life.  God is good.  I never thought I could be married to someone who just gets me, because I can be a complicated person.  One of my very good friends told me years ago when he met me that I was the "creative thinker" and he was the "black and white thinker".  I knew what he meant-- he got to the point and didn't embellish what he was thinking, but I liked to be creative when I was talking.  You would get this concept if you knew me, which I think most of you know me personally already.  I am just one of those people that think outside of the box and ask a lot of questions!

     Summer vacation has been wonderful!  I signed up Cole for a summer camp called H.E.R.O.E.'s back in March, as it is a wonderful camp for kids who have autism and learning/physical disabilities.  My family and I love to travel, so we had to cancel our camp plans for Cole.  A lot of my friends send their kids to camp and I even grew up going to camp, but for Cole, he needed a break from camp/school.  I love summer, simply because I need to rest and take a break.  I know if I had a difficult kid, he would be scheduled for everything in the Dallas/Fort Worth area until school starts, but I have an angel.  Cole loves his family, he loves staying home, but most of all he loves to travel.  Early in Cole's life, we were able to provide him the gift of travel which has expanded his life and how he sees it.  I thoroughly believe he learns so much more while we are taking road trips (or flying to New York), than attending camp.  This doesn't mean Cole does not have structure.  We have three chore charts in our house and if Cole doesn't do his chores around the house, he doesn't get to have an extra thirty minutes with his electronics.  We also make sure Cole looks at his calendar every day to see what he has planned.  Cole loves his friends and we are blessed to have some great ones!

     You probably are wondering where we travel in the summer and our main vacation spot is:  WALT DISNEY WORLD!  I didn't put this in the title, simply because I wanted to make sure you read this post :).  My husband fell in love with Walt Disney World when we took our first trip in 2011 and we have been going back every year.  We have stayed all over the Orlando/Kissimmee area for our vacation, but I think this was our best vacation EVER!  We researched the best area (closest to Disney), found the best hotel set-up for us, and booked our hotel in April.  We knew we were going to stay for two weeks, so we wanted an apartment or two bed-room suite that had a kitchen.  We have never taken a vacation without Cole, so it was important to us to have that adult time and our own rooms.  Cole LOVED having his own bedroom!  He called it his apartment and in his bedroom, he set it up like home.  We are beyond blessed to have such a creative child who knows what he wants.  He put his stuffed animals-- all thirty of them-- on the other bed in his room, and kept one with him in his bed.  The hotel staff couldn't have been friendlier and the room was sound-proof!

     The best advice I can give you as a mom who travels a lot, read reviews from Trip Advisor and other travel websites before your book your hotel.  Actual people write reviews about their stay and this has really helped me when booking a hotel.  We requested the fourth or fifth floor, simply because all of the reviews said the first and second floors were very noisy because of the bar and pool on the first floor.  The reviews have helped me a lot when looking for that "perfect hotel" for our vacations.  The other bit of information I can give you is be prepared in advance to go with the flow, which can be hard when you have a child with autism.  Disney World, much to my chagrin, changed their disability policy last October due to people abusing it.  You can still receive a disability pass at any guest services in the Park, but you have to get your pass signed and come back at your appointed ride time.  Cole did much better this time, simply because they also have the Fast Pass + option.  This option, Fast Pass Plus, is a God-send to parents like me.  This new feature lets you pick three rides at the Park you are going to for the day and it assigns you specific ride times.  We would plan our day accordingly when we received our Fast Pass times and it worked out for us, for the most part.  What you can't plan on is the weather in Florida!  Sometimes it rains for hours (which stinks if you have a water park planned for the day), but other times, it can just rain for ten minutes.  Make sure to give your child and family options when it rains.  We knew if it rained, we would head over to Downtown Disney and Disney Quest because it would be open.  Make sure to always have a back-up plan, simply because if you don't, expect a melt down.  We were very lucky on our vacation.  Cole didn't have one big meltdown, and I think it was because we planned in advance for it.  You can't think of everything, but if you plan in advance for a trip like Walt Disney World, you will be better equipped to handle the meltdowns.

     Did I mention I love summer?  I love being home and I love teaching during the summer!  I have two students that I love to teach during the summer, simply because they love music so much.  These kids bring me joy and I feel blessed to continue to inspire them!  I hope in the future to open a music school (totally dreaming here) that is dedicated to students who have learning disabilities, such as autism.  Music is what inspires my son.  Music inspires me to do great things with my life and to continue to educate our youth of tomorrow.  I may not be a great teacher, but I feel I inspire others to be their best.  I know if music doesn't get to you (any kind of music!), then you don't have a passion for it.  I get that.  However, you can't tell me when you hear that song on the radio that makes you cry, it inspires you do something better with your life.  Life can get crazy and hectic in our house, but if you take the time to stop, enjoy the moment, and realize life goes by so quickly, you will enjoy your life more.  Our vacations are wonderful, simply because of Cole.  Cole sang the ENTIRE WAY to Florida (think two days for ten hours each day).  He sings like an angel.  His new favorite song is "Over the Rainbow" and he sung this a lot while we were driving.  The version he is learning of this classic song, as made famous by Judy Garland, is sung by Hawaiian native (now deceased) is Israel "IZ".  Check out the original YouTube link here:  https://www.youtube.com/watch?v=w_DKWlrA24k.  The irony of our vacation is that when we were leaving, it rained.  Guess what showed up?  Not one, but two rainbows.  I believe God is speaking through my Cole.  Was this a God thing?  I think it was!  

     Our next vacation:  Galveston with my parents, brother, sister-in-law, and my awesome nephew Dylan, and gorgeous niece Rylie!  This has become our go-to place every year since I was a baby and I thank my grandparents, Nanny and Granddaddy Compton, for taking us as children.  Those road trips to Galveston were the best because of the memories we made with Nanny and Granddaddy.  I reminisce about my Grandparents, simply because they were phenomenal people.  I was blessed God called them to adopt my mom at two weeks old.  They were the best Grandparents a girl could have.  Cole asks about them a lot, simply because he sees pictures of them and knows who they are.  Families can be messed up, simply because they don't receive the unconditional love they needed as a child.  I have been blessed by God to have had a wonderful family and now Cole has that gift:  an amazing and wonderful family who love him beyond words.  My husband can't join us in Galveston, but he always gives us his blessing.  We love you sweetheart and will miss you!  However, that being said, I can't WAIT to see my niece and nephew.  Galveston bound in ten days!!!!!!!!