It’s Been a Month

It been a month since many others and I lost a very good friend. Jennie hoeft wasn’t just my friend she was my camp counselor. Since my first year at camp MASH (Make Arthirits Stop Hurting) at age eleven, I was scared because I didn’t know anyone and this would be the first time I’d be away from home. Jennie was the first person to greet me when I came off of the long Minnesota bus ride. The very first time I met her she ran up and gave me a hug. She had the brightest smile than anyone I ever knew. Since that very first day we grew closer, I barely left her side. She would never leave me out of activities even though I was in a wheelchair. Being said every time we used the elevator we would try to fit 15 girls plus a wheelchair into a small elevator leaving it to beep from being held to long. Everyday she would wake us up with her singing, but we didn’t care cause it was Jennie.
Her death has had a huge impact on people she knew and on the lupus committee. Jennie passed away from complications from Lupus. She was 27. The impact of Jennie showed on how many people attended to her funeral-over 500. Jennie was so young, even though she may have been in pain. She always had the brightest smile. She never let anyone down. She was always there for people.
My world and camp will never be the same, but I know we all will always live with her spirits in our hearts!
Jennie you taught me to live with high spirits and to always smile no matter what! From you favorite movie The Lion King Hakuna Matata and the circle of life, live without worry and live freely.

I leave you with our camp song that we always sing at our camp closing ceremony.

Sometimes in our lives

We all have pain, we all have sorrow

But if we are wise

We know that there’s always tomorrow

Lean on me when you’re not strong

And I’ll be your friend, I’ll help you carry on

For it won’t be long

‘Til I’m gonna need somebody to lean on

Please, swallow your pride

If I have things you need to borrow

For no one can fill those of your needs

That you won’t let show

You just call on me, brother, when you need a hand

We all need somebody to lean on

I just might have a problem that you’ll understand

We all need somebody to lean on

Lean on me when you’re not strong

And I’ll be your friend, I’ll help you carry on

For it won’t be long

‘Til I’m gonna need somebody to lean on.

  

My HOPE is…

to help others with arthritis and other chronic diseases. #MyHope #ChampionofYes #WTCJA

To the people who stared

Last week I was out to eat with my family at noodles and co. while we were there my mom started getting angry and I didn’t know why. All of a sudden she started talking to my dad and brother about a high school couple who was staring at us. At that time I just though whatever let it go its happened before. Then it got worse, they started to pointing and laughing at me. I just stayed quite they don’t know my story. The thing that got me angry was that I wasn’t the one to see it, it was my family who did. I didn’t want my mom to my a big deal out of it even though I know she should’ve. she said “I should just go up to them and take a picture, then post it on facebook and tell everyone about.” I didnt want that to happen, but when we got home I was so hurt and angry that, this situation had effected my family and has before.

Let me tell you something that night they didn’t hurt me, but they hurt my family. If you want to laugh and talk about me don’t do it in public and have it affect my family. I understand they were in high school and they don’t know my story, but they know right from wrong. This isn’t the first time something like this has happened. I’ve had a whole family (with little kids) stare and laugh at me. Just educate yourself or come up to me and ask me questions. just don’t laugh and stare.

Here are a couple different articles similar to my writing. http://www.huffingtonpost.com/ellen-seidman/a-letter-to-the-mom-who-stared-at-my-child_b_5354478.html

 

Excited, yet nervous

So glad to be graduating this year! It has taken a lot to get to this moment, but I wouldn’t take anything back because it shaped me into the person I am today! Senior year is for the tears, facing the fears, loudin the cheers, you learn how close you are to some, and how far away you are to others. You’ll have you lasts and get ready for the firsts. Then look back on it and remember it forever. Got this in the mail a couple of days ago! Less than 120 days till graduation and less than 200 days till move in day! I’m super excited yet nervous! Proud to be an eagle!

  

Growing up and Losing

As we grow up we lose friends! It’s just the sad part of life! The friends we had in elementary school were no longer our friends in middle school and the friends we had in middle school were no longer our friends by the time we graduated! People just grow up or they don’t, we realize that they are there for us or not! We realize who is mature enough to handle life and grow up. Then there are the friends who have moved away and can be hours away and yet still keep in contact. As we grow up I’m still there for my friends who has stopped talking to me . I am so grateful for the friends who have stuck by side since my first day at Farmington, first day in middle school, first day in high school, and to all the friends who will be there when we cross that stage to get our diploma. Thank you and I will always be here for you!

To My Former Best Friend

Please Help

There are just 27 days till the walk to cure juvenile arthritis aka JAM. Juvenile arthritis affect 300,000 children including me. I’ve had arthritis since I was 6 months old in 2007, 2 weeks before I was scheduled to have a stem-cell transplant I went into septic shock. Having going into septic shock I was in a coma for 2 months and in rehabilitation for another 2 months. After having rehabilitation I went back to school being able to go as much as I could while losing my toes, finger, hooked up to an IV, and losing my hair. But I kept going because I knew I had not just for myself, but for my family, my friends, classmates, teachers, nurses, doctors, and all the people I would meet in the future. I also stayed strong for the people I would have met when I am helping people in a similar story, I can’t wait to help people like me. In November I was excited to find out that I was accepted into Edgewood College to do just what I want to do. You can help children just like me, who have been diagnosed with arthritis by joining the walk to cure juvenile arthritis or by donating to the arthritis foundations. People with an autoimmune disease such as arthritis or lupus have struggles that a person shouldn’t have to struggle with such as showering, getting dressed, brushing their hair, walking, and spending time with friends and family. By donating you will help find a cure for arthritis or send a child to a very special camp. By walking you will raise awareness to this disease that not only affect adults but also children. Please donate or walk you have to do little but it will do a lot to those people with arthritis.Walk to Cure Arthritis

Disability Discrimination

Gale Encyclopedia of American Law Americans with Disabilities Act (ADA) is a milestone for those with a disability. The ADA has been called “Bill Of Rights” for people with disabilities. About 20 percent of the U.S. population is disabled. The author of Associated Press article Disability Discrimination Claims Agency’s Agenda, Jennifer McDermott says the commission received more disability discrimination claims than sex, race, or age since early 1990s. I believe there is discrimination against people with disabilities in the workplace, schools, and in public. For disabled people it is very hard to find the right workplace, education, and accommodations. First, discrimination in the work place.

According to an article in The Associated Press a woman in Mankato Minnesota Laurie Goodnough is suing her former employment Baywood Home Care. Goodnough is suing because she was discriminated against and fired for being seen walking around with a cane and complaining. Goodnough has Fibromyalgia and Osteoarthritis these diseases limit her ability to walk and bend easily. The walking aid gives Goodnough her ability to bend and walk more easily. The problem with this is that Goodnough was an employee at the company since 2007. She was a good employee, but when other employees saw her with the cane they told the manager. She was doing exactly what she needed and did not do a poor job while working. According to an article Jennifer McDermott states that some employers do not know how to make accommodations, for employees with disabilities or even know what qualifies as a disability.  Other case also says that some employers are not hiring, promoting someone, or firing the employee, because of disability. Now you may ask your self, “How has the problem been solved before?”

Imagine you are put into a cage and you have autism, imagine how scared you are. This happened to an autistic boy. A report from ABC Premium News Federal Opposition Backs Calls for National Inquiry into Education An article called Disability Rights in Civil Rights in the United States says that the disability rights movement is still new with the civil rights movement. The movement reflects recognition that features contemporary society (physical and social) have worked, sometimes not meaning to, restrict rights and opportunities of those with disabilities. An article from Gale Encyclopedia of American law says the ADA is a law that is made up of five titles. The first title says that employers are not allowed to discriminate that are able to screen out people with disabilities or standards that have an effect against the person. The second title is that public services must be able towards disabilities. The third says that private business that provides accommodations cannot discriminate. The fourth title is that telecommunication companies cannot discriminate against people with disabilities. The fifth tile consist technical and miscellaneous provisions.  The ADA is what protects disabled americans from discrimination, yet it is still happening. Now what do we do with the children that have disabilities?

of Children with Disabilities After ACT Cage Incident. The ACT case is that a child with autism was put into two-meter by two-meter cage like structure made by pool fencing. Mr. Innes who deals with cases like ACT case says that “I think that the key issues here are both the lack of resources for schools and training for teachers, and just lack of awareness of teachers who might think that such actions are appropriate.” I believe that every teacher and student or class mate needs to be educated on the subject of disabilities of the person.

An article in Education: Meeting America’s Needs? Education for Special Needs Students says that in 1992 an act called Education for All Handicapped Children Act was renamed Individuals with Disabilities Education Act (IDEA).  IDEA was renamed and redefined in 2004. Terms added to IDEA are mental retardation, hearing impairments including deafness, speech or language impairments, visual impairments, and also including blindness. Other terms are serious emotional disturbance, orthopedic impairments, autism, traumatic brain injury, and other health impairments, or specific learning impairments.  Now you maybe asking yourself, “Is this what children need”?

An article in Gale Encyclopedia of American Law Disability Discrimination says, there is a law that was made in 1975, studies showed that more than half of all disabled children was not receiving appropriate public education. About one eight of those children was left out of public education all together. In 2006, over six million children had received special education because of IDEA. According to Gale Encyclopedia of American Law Disability Discrimination each child is covered by IDEA and is entitled to Individualized Educational Program (IEP). The IEP is developed by the parents, teachers, and doctors. IEPs identify the abilities and needs of the child. It outlines educational placement and services that address the needs. Today we have discussed discrimination of people and children with disabilities.

As you can see people with disabilities are discriminated against a lot in the workplace, school/education, and in public. People with disabilities are discriminated against a lot in the workplace, school/education, and in public. Twenty percent of the U.S. citizens have a disability of some sort. I urge all of you here today, not only think about discrimination, but think about who is being discriminated against, and where that is. If you see a disabled person being discriminated against let them know you support them, and let someone know about the situation.

Face Your Future Without Fear! Thank You To Everyone!

“Just because the past didn’t turn out like you wanted it to doesn’t mean you future can’t be better than you imagined.”-Unknown

Today is the start of the future. My future begins now, tomorrow, and the days after. It is scary because this years is when everything changes. Even though I turned 18 last year and was given new and bigger responsibilities than I had before. I was given the responsibilities of making appointments, dealing with doctors, and dealing with social security. Let me tell you my mom made it look easy. Even though I had watched her since day one dealing with these struggle had no idea how to deal with it she made it look so easy.

Now this is the year that changes everything. This is the year that I have my last school dance, my last choir concert, and my last day of high school. It is also a year of first though. It is when I move out and move to Edgewood and deal with real life. It is when I really start to deal with doctors and chemotherapies on my own.

When I look at my future it scares me because I don’t know how to do things on my own, but I know I will be fine. My parents are already planning on coming to my campus every other weekend to visit me and make sure I am alright. It is going to be hard because I will be leaving behind my family among with my friends and teachers who I have grown to love.

I have had many friends from school who have stopped talking to me through the years, but then I still have those friends who are still there and have been there since day one. when we say goodbye there will be laughs, but also some tears. I am so happy to have those friends who have moved away, but still talk to me as though they see me everyday.

Then there are the bullies who have made me cry. Whether it was from cyberbulling, calling me names, laughing at me or just ignoring me. Then never apologizing. One day you will see what you did to me, you just made me a stronger person I am so thankful that you did that to me, because now I am on top. So thank you to all the bullies. And make sure no one gets bullied ever again.

Then there are the teachers and school nurses who have been so loyal to me. Often times I would not be able to play or learn the way do other students do, so I would stay and sit with the teachers or nurses who I would eventually become close to. They have been friends that I often needed. They were there when I needed someone mature to talk and laughed or cried with at school. I have had many teachers who have treated me the same as other students and that is what makes the difference. I have a middle school teacher that i still talk with even though I am about to graduate. I am so thankful for her because she has helped me get through so many rough times during middle school. During my last IEP meeting there were teachers and nurses who have been there from the start. They could not believe how far I have overcame throughout the years. During the meeting we all started crying because we finally realized this is the last meeting EVER.

Then there are the other teachers who have made me cry. Whether it was from failing me even though I wasn’t even there, yelling at me in front of the class for something I cannot control, or just treating me differently. One day you will see what you did to me, you just made me a stronger person and to be the person I am today. I am so thankful that you did that to me, because all that it did was make me fight for what I believe in, an now look at me, look where I am. I am in the top half of my class with a 3.2 GPA and about ready to graduate, and go to one of the best colleges there is, so thank you.

Lastly thank you to my mom who has been there for me since the beginning of time. I dont know what I would do without her. She has done so many things for me. Even though at time I probably don’t deserve it. She is my best friend. I hope our relationship last like this till the end of time. THANK YOU MOM. I LOVE YOU.

You Get To Decide The Legacy That You Leave

“Senior year is for the tears, facing the fears, loading the cheers. You find out how close you are to some, and how far away you are from others. You’ll have your lasts and get ready for the firsts. Then look back on it and remember it forever.”-Unknown

“Family: Like branches on a tree we all grow in different directions, yet our roots remain as one.”-Unknown

Today marks the half way point of senior year. Yes, there is only 83 days left of the school year. That means only 83 days till I graduate. It is a bit nerve racking to know the day keeps getting closer and closer. Yet, I am so excited for the day I move to Madison. I know it won’t be easy being 4 hours away from home. I know I am going to get homesick and will miss my mom, dad, and even my brothers, but it will be a nice change.

Knowing I will be 4 hours makes me anxious. Knowing I will have to take full responsibility of myself makes me even more anxious. The move will not be as easier as someone else. I am going to have to change my doctors and hospitals that has been almost a second home. I have to figure out on my own of how I will get my monthly chemo at school. I will either have to go to the hospital during a weekday and miss class (which I’d rather not) or go during the weekend.

Being 4 hours away will be hard. I will miss my family so much. They are the ones who keep me wanting to go on. A lot of the time I get nervous about leaving my mom. Knowing my mom will be in a house of 4 boys (including dad) is always racking in my head. I hope she won’t go insane. Its going to be really hard for me to be away from her. She is my best friend I dont know what i will do without her. I believe dad will be right by her side helping her deal with the boys.

I think being 4 hours will be nice for me. It will give me the independence that I need. Most time when I tell people that I will be 4 hours aways they say “wow thats far away! will you be okay?.” I will reply back with “Yeah but, its not right down the road or an hour away! They can’t just pop up out of the blue.” In reality it scares me knowing they won’t be close where I can’t come and see them. I miss them so much. Though its far I know Edgewood is the right place for me.

Making Hospitals A Better Place For Kids

“A hospital can be a scary place. Help kids cope with stress and uncertainty is what child life specialists do. They asses needs and explain what is about to happen, using age-appropriate language and medial play. They calm fearful patients with relaxation and distraction techniques. Soon that scary place isn’t so scary anymore.”-Unknown

Imagine being ten and having a mom, dad, and three brothers under the age of nine. Then imagine yourself being very sick. Imagine that your toes and fingertips are falling off from necrosis, having an open wound the size of your hand on your stomach, and not having anyone there to help you and your family through this difficult time. A child life specialist is a pediatric health care professional who works with children and families in hospitals and various outpatient settings to help them cope with the challenges of hospitalization, illness, and disability. During this time the child life specialist could not help my family and me. That being said I have put my all into my future of becoming a child life specialist. I want to be there for them. I want to help children and their families the way that the child life specialist couldn’t for us.

   Child life specialists have been there for me when I was in the hospital and needed them. I became close with some of them, but sadly, not all of them.  When I was very sick and dying, the child life specialist was unable (possibly due to a lack of experience) to explain to me or my family about what was going on. The child life specialist was educated i.e. book smart however in the empathy department our needs were unmet as a family and as a patient.  Someone with similar experience could have provided what we desperately needed. Someone who understood the pain what my family was experiencing. Many child life specialists do not yet have the life experiences that would enable them be able to put themselves in their patients’ shoes. All the training in the world will not prepare them the same as having the life experience of being a child with a compromising health condition. They will always be there but the field of child life specialist is in need of more people with real life experiences of childhood traumatic illnesses.

 

I figured that I wanted to become a child life specialist at the young age of ten. I knew from a young age that I wanted to help children with health problems such as a pediatric rheumatologist, but that was too much school.  To become a child life specialist you need to have a baccalaureate degree which is four years of college. The idea of becoming a child life specialist had struck me because I have been sick for a long time that I knew I would help them. A child life specialist isn’t like a social worker or a doctor. They are someone who you can learn from and play with. They help relieve the stress that may be burden sick patient and family. Child life can help with explaining medical procedures and helping them understand what will happen. They can also travel to the patient’s school and explain to the classmates and teachers about what will happen at a level that is appropriate for children. They can also teach the patients and families skills that will help the, cope with the illness. After all I have had a traumatic illness since I was a baby, and grew up with three younger brothers. In my opinion I will be able to make child life specialist a better field just because I have been in the shoes of someone who has been ill. Many people will not be able to put themselves in that type of situation, but I will because I have been in that situation. Even though I can’t tell how the process of having someone with an illness was for my parents, brothers, friends, or loved ones affected them they have told me stories about how it affected them and I will be ready if that situation comes up for the patient and me. I hope the children will look up and trust me more because they and I have gone through similar circumstances. They will be able to look at me and be able to tell that I have had an illness. I know that my height will help them be able to trust me better than someone who is taller because they will think of me as their friend instead of someone who is trying to hurt them. I hope that I will be capable to help children with traumatic illness feel more comfortable in the hospital.

 

As you can see that my reasons for becoming a child life specialist is beyond a job or a chore for me. As I finish I leave this quote for you by B.J. Seabury “I’m not a therapist. Play isn’t just diagnosis or therapy. It’s these children’s right and their need.” It is my passion to help children feel more comfortable in the hospital I believe that I will be able to help my patient and their families more than someone else can just because I have been in their shoes. A child life did a lot for me, but they had a lack of experience that would have helped us to know that everything was going to be alright. I know my patients will feel more comfortable around me just because they will be able to trust me more and do have experience per say someone that is tall and does not understand what they are going through.