brother.

always my baby broth. 

i can remember the day my parents told me i was going to be a big sister so vividly. we were in our kitchen at our old house. fabric chairs on wheels, yes it was 1989. it was a sunday morning and my parents were at the kitchen table. with the sunlight shining through our pink/mauve blinds i remember my mom looking at me and telling me those sweet words "you're going to be a big sister". i remember looking at my moms stomach in her white and green diamond pajama shirt and wondering "theres no baby" while saying words of pure UN.excitement.


what do you mean? im going to have to share my two favorite people in the world with someone else? absolutely not. no way. they were clearly out of their mind.

little did i know that several months down the road i would have a complete change of heart. after all, i was meant to be a big sister. from the moment he was born, i was in love. there was nothing that would ever separate the two of us. no one was going to hurt him. i felt like i was his protector. i mean, before my brother was born i was sleeping night after night with my parents. when Brandon came home, i moved my sleeping arrangements to my own bedroom upstairs, next to his. just in case he would need me.

now, i wont play fake and tell you that we never fought, argued, or tried to get one another in trouble. because yes, that did happen. but with us it was different, our fights were over in a matter of minutes and we'd be back to doing what we were doing. Brandon was the first person in my life to push me. To challenge me. To argue with me. i honestly credit some of my confidence to my baby broth.

i could write for days on our relationship growing up. i could tell you story after story. everything from getting in trouble at school to a first kiss. i could tell you that he had a heart of gold with an armor exterior. i could tell you that he loved his family and friends more than life itself. i could also tell you that he called me sister. not just as relation, but as we got older my name went out the window and sister was just who i was to him.

here's a look on my favorite relationship with the most perfect baby broth anyone could have asked for.

love at first site. June 15, 1990

 

Broth,
   As tomorrow approaches I can't help but remember when I found out what had happened. I was in shock and my hurt was full of pain. I won't forget that day. I also won't forget all the memories we had shared in your 20 beautiful years of life. I am so thankful that you let me always be your big sister. I am thankful that you never pushed me away or were too cool. I wish we could spend more time together and we will, someday. But for now, I think about you always, miss you like crazy, and want to leave your legacy. You are the best brother anyone could have asked for and as tears are running down my face, my heart literally aches and I would do anything just to see you one more time. I love you more than you'll ever know. See you later,

                                                                                 Love, Sister

daily reminders.

deep breaths. 

isn't it simply perfect how a long evening run can surface so many thoughts and feelings. 

that was me tonight.today i felt blessed to share a beautiful Easter day with my family, sharing laughs, good food and hugging on some babies. 

but something was  is always missing. 

on my run tonight, between the sound of my feet hitting the pavement and my muffled heavy breathing i reflected on today. and my mind kept bringing me back to one thought earlier this morning. this thought occurred as my parents and i loaded the yukon and drove to my grandmas. as my eyes were quietly watching the green scenery rush by the window, i couldnt help but glance next to me. at the empty seat. 

as i looked at the empty seat, i couldnt help but bask in the fact that my brother should be there. dressed up in his fancy jeans and graphic tee with the smell of cologne suffocating the car. probably telling some intense story or using his dry sense of humor to make us laugh. it's completely not fair. 

that empty seat symbolizes so many things for me. 

how my perfect family of four has now turned into three and an angel. how when we go out to dinner it is no longer my brother and dad on one side and my mom and i on the other, but now someone is to sit across the table by themselves. how when we sign our name on a family card it just isnt the same. how Brandon and I used to get into texting battles over what to get mom and dad for birthdays, Christmas', etc. and he had some pretty great ideas. thats what i loved most about him. his rough exterior but his soft and gentle heart. 

it gives me a lump in my throat coming to terms with how fast or quickly someone's life can be turned upside down. 

and when i can feel so much heartache and pain one minute, on the flip side, i feel blessed. I feel blessed that today is Resurrection Day and that God is the reason my brother is still alive in Heaven, enjoying everything it has to offer. with no worry. no sensation of missing us. no pain. simply happiness. man, i can't tell you how excited it makes me to know that one day, i will see him again. and i won't have to imagine an empty seat in the car. what a wonderful gift.

here's my challenge to you: live everyday like its your last. when you come in contact with your "empty seat" have no regrets in the way you loved that person. tell them everything that comes to your heart. fight with them. make memories with them. and pray for them. 

sadly enough, everyone has that empty seat. 

I hope everyone had a wonderful Easter. 

I'm signing out with one of my favorite verses that often times can take away that lump in my throat. 

Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.
“You heard me say, ‘I am going away and I am coming back to you.’ If you loved me, you would be glad that I am going to the Father, for the Father is greater than I. I have told you now before it happens, so that when it does happen you will believe.    John 14:27-29

Easter 2010, my last Easter with Brandon. What I would give for that arm to be annoyingly wrapped around my neck this second. 

Love,

H

2013 advocacy day.

storm the castle!

the whole story. 

since losing my brother to the eating disorder battle, i've felt many waves of emotions. everything ranging from complete dark sadness to a motivation and passion so strong that it hurts. when seeing someone you love so much lose to something that COULD HAVE  should have been prevented, it just doesnt sit well. there is strength inside of me that keeps yelling change. change. change. and to this day, i am not 100% positive where it comes from.

having the hope for change is completely different than being a part of the change. those who know me know that i am not a sitter. i dont let others fight my battles. and frankly, there is usually only one way to do something and it's mine. (a definite characteristic of both my brother and me.)

several months ago, my mom and i had received ours weekly newsletters from NEDA announcing that Missouri would be hosting their 5th annual Missouri Eating Disorder Advocacy Day in Jefferson City. immediate response: scared, intimidation, and questions. after some thinking, we knew that we needed and wanted to attend. this could be the start of change for me. maybe i could learn how to get my voice heard? 

last week, we received our advocacy packet and well, you can say there were a few panic attacks between the both of us. what does this look like? what will we be doing? i don't know anything about laws? will we have to talk to them ourselves? i'm nervous. what if i cry in front of our senator? this will make a difference!

so, we studied looked through our packet of information. we saw who we would be meeting with and who would be on our advocacy team for the day. overall, we just knew that on thursday morning we would leave kansas city and drive to jefferson city. who cares if we didnt know what we were doing? we were changing lives. 

thursday morning came. i was up at 5 a.m. with nerves running through me like a train. it literally felt as though there was a lump in my chest combining an array of emotions inside my chest. but i got up and ready. outfit not complete until my pin was placed over my heart. i knew my brother would be with me during this day and helping me along the way to find the strength, courage, and right words to say but i didnt feel complete until i could see him. you could say that my brother and faith were the thing holding my together at this moment. 

we arrived at the Capitol around 9:30 a.m. nerves still rushing and questions going on for days. with all the anxiousness i was feeling, i was also experiencing a calmness and peace about being here today. for this cause. for my brother. i about to make a difference. whether a tiny one or a monumental one didnt matter. a change is change. 

our directions were to meet promptly at 10:00 a.m. in the capitol to began our session. we arrived, received our directions, post cards for thank yous and gathered with other people who have somehow been affected by eating disorders. there were several survivors, parents, sisters, brothers, dad, grandparents. all these people have been impacted by eating disorders.  

 we began with several speakers. the first speech was given by a research doctor in the eating disorder field. she spoke facts that sent literal pain through my body. it was intense and true and so not okay. i've chosen to share just a few with you now.

• 500,000 Missourians will suffer from a serious eating disorder at some point in their life.
• 30% of girls and 16% of boys in American High Schools will suffer from disordered eating.
• American Academy of Pediatrics has called attention to the sharp rise in hospitalizations for eating disorders among children under 12. 
• For females 15-24 who suffer from anorexia, the mortality rate associated with the illness is TWEVLE times high than the death rate of all other causes of death!
• Only 1 in 10 men and women with eating disorders receive treatment. With treatment the mortality rate decreases from 20% to 2-3%.
• Average cost of inpatient treatment is $30,000. It is estimated that individuals with eating disorders need anywhere from 3-6 months of inpatient care

it was painful to hear statistics after statistic. this curable and treatable disease is taking innocent lives daily. we have the power to help. we have the voice that other have been robbed of. 

our next speaker, was Miss America 2008, Kirsten Haglund. talk about a positive role model for young girls in this harsh society. she was a phenomenal and passionate speaker. she herself suffered from an ED when she was younger and is now so involved and has her own organization to help fight this battle.                                           \http://kirstenhaglund.org/ 

"The initiative to create KHF came from my own battle with an eating disorder, and desire to expand awareness of this disease. While traveling the country as Miss America, I heard firsthand, story after story, of young men and women who, with professional help, were able to recover from their eating disorder and embrace total wellness and health. Along with this truth however, comes the sad realization that treatment costs, largely not covered by health insurance, can be devastating. Residential treatment and/or inpatient care can be an individual’s only beacon of hope for recovery; their only chance at life. However, this specialized care can cost up to $2,500 PER DAY.

We know that cancer and diabetic treatment plans, emergency surgeries, and other life-threatening illnesses can be costly as well. Fortunately, someone with such a diagnosis may be covered by health insurance and not required to pay for treatment “out of pocket”. So why is this not the case when one is diagnosed with an eating disorder? The illness is not a choice nor is it a phase. Rather, it is a life-threatening, physical and mental illnesses that will require full and specialized treatment by professionals in the field." 

 we ended our speaker session with a "why are we here?".

 we were there to ask lawmakers to support two sets of bills: H.B 131 and S.B 160, requiring Missouri health insurance plans to cover the treatment of eating disorders, which were sponsored by Representative Rick Stream and Senator David Pearce. we were also there asking for support for the HB 132 and SB 161, which would call for an actuarial analysis by the Joint Committee on Legislative Research on the cost of adding eating disorder coverage to Missouri health plans. (basically, do the research to prove how many Missourians we would be helping by providing eating disorder insurance)

with that, we were told to "STORM THIS CASTLE!". we also go word that SB 161 was about go on the Senate floor. 

without hesitation, i headed to the Senate Gallery. 

this picture shows Senators voting on SB 161. at 32-2 this bill passed right in front of our eyes. this was HUGE. this meant we had the Senate on our side to go ahead with actuarial research all costs associated with the insurance reform. definitely a great step in the right direction.

after this celebration, we spent our day in and out of Senator and Representatives offices talking about how important these bills are in order to get help for 500,000 Missouri citizens that will fight this battle. it was a different feeling. intimidating but encouraging and such a great experience all together.

since Senators were required on this floor this day, we spoke to many of the assistants. it was definitely overwhelming at first but after the first or second stop i found myself  saying things like "two years ago this coming tuesday, i lost my brother from an eating disorder. we couldn't find adequate treatment for him and he passed away in california by himself. we need this insurance reform......." the first time that came out of my mouth, i literally could have puked. it was so raw. so disheartening. it literally caused my heart to ache. but its the truth.

with each conversation, we all grew more and more brave hashing out facts and getting to the point. to see the look after we had shared our information was sad. you can clearly tell these people are not educated on this disease that will impact them. in someway. in somehow.

i was so impressed with Representative Ken Wilson and his office aide. WOW. i had missed him on my stop but after leaving some information to pass on, his aide called me and set up an appointment to come back. i arrived back at his office at 1:00 p.m. i sat across from him in his sophisticated office with leather chairs, pictures of his grandchildren, and golf memorabilia.

i began pouring my heart out. his eyes widen as i mentioned my brother, a male, had lost his battle to an eating disorder. he was shocked. we had great conversation about my expectations for this bill and what i would like to see in the future. he wanted more facts. i left a two-page fact sheet. i handed him a postcard with a picture of Brandon and said "if you help get this bill passed, this is just one example of the people you could be helping." i was brave. and i was proud. he told me that if we could get the bill to the floor, then we had his vote. what a true testament of this amazing man. he then proceeded to ask if it was okay to mention this and our names in his capitol report. and his aide snapped a photo.

our advocacy team for the day with Rep. Ken Wilson.

it was a perfect ending to such an inspirational day. i felt like i was making a change or difference with every person i came into contact this day. if anything, i spent a whole day talking about brandon. and for me, that was a gift in itself.

since the senate did pass the bill, we are now in desperate need to let our House know how important it is for them to support the Senate's decision. if you'd like to help, you can look here to find your representative and let them know they should support SB 161 and HB 132 (actuarial study bill to identify all costs associated with eating disorders insurance reform) as well as SB 160 and HB 131 for the eating disorder insurance reform bill. if there is no audience, they dont think its important. let's let them know we need this.

i am so blessed that i got to experience this day. despite the nerves and anxiousness, i know that i did what i could and am determined to do more in the upcoming months and years.

i know that i made Brandon proud of me and as good as that feels, it would feel even better if he were here to high five me and wrap his arms around my neck for a sibling hug. i will cherish those hugs we shared and do my best to ensure that no other sister has to write a blog post about fighting for something that her brother SHOULD have had.


you could say the stitch holding me together right now are faith, determination, hope, and Brandon. 


broth,
i know you were there with us the whole day. thanks for the strength you provided me and the courage to speak to our legislators. this is all for you buddy. 

love,

sister