Sunday, April 6, 2014

My Superman





 Throwbacks play a huge part in my life, and i live by the sudden shock of a smell or a feeling in my stomach that takes me back in time. I have always been comforted by smell and by sensory touches. And now a smell or a sound, something out of the ordinary, can come to me and trigger that memory and i relive that time in my life. Sometimes it is a good thing and other times it opens up a scar and i bleed again. All my memories while i am present with Jadon are amazing and little things that are nothing to everyone else around me, take me back to olathe and im with him again. I remember the day we found out about Jadon's diagnosis. I can see the tears on my moms face and her trying her best to explain to me and Jake about what was going to take place as Jadon grew. I think we were all really confused and so that added to the abundance of tears that flowed from my families eyes that day and in the days to come. with lots of my memories i can see what happened as if i left my body and was standing somewhere close by watching myself act. I know it isn't what really happened but it's how i see things. I was on the top bunk of my bed pulling blankets around the mattress then tucking them into the rungs that held the bed together. i had already heard the news about J's diagnoses but it took me a while to process what it actually meant. I talked to myself a LOT when i was little, and just between you and me i still do. I was very big on make believe things and me and my neighbor would often be sitting around a computer finding pictures of houses that were for sale in whatever town we thought was amazing for that week. We went on airplane rides and rode horses. We cut up magazines, finding clothes that we liked for us and our pretend siblings. when either of us would return from a trip we would tell the other all abput the states we saw and about what new names we heard or what swimming pools we played in. By the time i was 7 i was a world traveler. After i returned from visiting Jodon for the first time, when he was only a few months old (before d-day) i was filled with love for this new baby that i had seen i told her all about him and his room and how fragile babies are.( as a young kid that really stuck out to me was how careful and slow everyone was around the baby) At this point in our games we weren't siblings anymore but we were actual parents with little kids and jobs and cars. We, being girls, hadn't ever had a "brother" in these games let alone a son. But I came back from this trip and i had changed. Now i thought baby boys were the best thing ever and all of my sons had one name... Jadon Thomas. My grandma would even talk about names that Tony and Kristin had considered before choosing his name. Timber was the main one that i remember. I used that a lot too. I even named a chicken that .... yeah i was weird. After Jadon's d-day though thimgs changed, this time differently. I didn't like to pretend as much as before and using his name seemed wrong. I was worried for him, but in a way that a forth grader would worry. My neighbor and I played a few more times, but mostly we drifted apart. We changed and i think that it was for the best now, but at the time i was confused and sad that my fantasy life was dying before me. You know how people say that someday you'll look back one day and see how everything played out, perfectly for you? I'm starting to see some of those in my life that i was worried i wouldn't ever see. I quit playing those games because i was scared that something bad would happen to whoever i used in my games. I can see today though that it showed me the real world in a different light. It's not all fancy houses and lots of rooms with hired help and expensive clothes, It showed me that change can be good and to accept it with open arms because the more we struggle the more we sink. I will remember my games and that life with it's smells of summer and lilacs. Ill remember buying baby clothes at the habitat store, and it will stay as one of the happiest times in my life because i was living my dream, and finding out what i wanted to do with my life.
           
     Last year was a really rough time in my life and so getting to go out and visit Jadon for the first time since 5th grade was amazing. I got to see my hero and feel is hand in my own. It was a magical experience for me to visit him after only seeing him grow through pictures.After doing the first bug run we headed back out to see him in June for his birthday. It was the best thing that happened that summer and i can't wait to do it again this summer :D
      We just got back from the 2nd Annual Jadon's Hope Bug Run and my words fall short of describing the overpowering joy that fills me whenever i'm with the burks family. When i stand next to him i feel like i can do anything. He radiates happiness and strength and makes me feel alive. Its amazing. I had my best time yet for a 5K with 35 minutes it's not amazing but it's the best that i'm able to do. ( At this time... next year i want to say this again only with a lower time) Kristin is such a strong willed lady and she inspires me with her heart and gentle attitude. Seeing her talk in front of everyone was encouraging and something that pushed me to speak out. Before the race started i lost it, the tears came and wouldn't leave. It's so incredible to see all those people lining up for Jadon. They were their supporting him and the kids with SMA, it touched me in a way that i hadn't expected and so i let the tears take over. It was about 2 minutes till the count down when my dad told me to go give Kristin a hug. I was nervous at first because i didn't want to get in the way and i didn't want to miss the start. Kristin, you give the best hugs, The most encouraging, tight hugs and it gave me the will to actually run my race. "Go get 'em" that's all i heard the entire time. Not my music- it was simply a buzz, not the people holding sings, just your words. "Go get 'em" It pushed me. When i fell and wanted to quit there was your  voice, clear in my head. "go get 'em"   NEVER GIVE UP. And i finished it, the end came closer and i could hear the cheers ahead. This is SMA and this is how we help them dance. Best. Day. Ever.

Awesome Big sign :)


Bitty Bug Run !!!!
Jadon pressing the buttons on my flute


This beautiful girl is getting SO big


Running for the finish line :D Go Bug !!



Photo: The BUG = Our little Superman
.
#superman #DanceInTheRain #JadonsHopeFoundation
Jadon... you will always be my superman. "It's not about the powers. Not the cape. It's about justice.
For truth.As long as people like you are out there, i'll be there. Always."

Thanks for letting us come see you big guy, lots of love,
Danika


Friday, November 8, 2013

Inspiration


Have you ever been replaced ?
Completely forgotten by someone that you love. Invisible. Not needed. Forgotten. Replaced. these overwhelm me...i struggle a lot with self worth and last night was very hard for me. I give away huge pieces of my heart but sometimes i give them to people who don't actually realize how much of a sacrifice it is for me. i can feel spread to thin and then i think that i'm failing.I love helping others in need especially those who have similar difficulties as me but I never fully understood that i was being used it wasnt me it was just anyone who would give this person a friend.
Im scared now to lose my other friends. I worry all the time and most of it never happens but still i worry.
I worry about one of our foster kids going back home and then us not getting her if she goes back into care. I worry about my favorite teacher's pregnancy, what if there are complications, what if she gets sick,what if the baby is stillborn or has difficulties. I worry about my family when they drive to school or to work. I worry about a school shooter. I worry about losing my grandparents. I worry about having to repeat 9th grade. I worry about other foster kids who have gone back to their bio families. I worry about coming to school and hearing about a kid that I didn't say good bye to committed suicide. I worry about people who have passed away, what if they didn't go to heaven. I worry about Jadon, and Gwendolyn, and Nora, Lucy Lunt, Hayden, Getty, Scarlett, Stella, Addy, Aaron,Cheyenne,Eli ,Kaige, Ari ,Ayden, and so many more.
I worry about being replaced.
                   I get really discourage and down. I cry. But slow and steadily I'm learning that bad things are going to happen all the time and it isn't my fault. I'm learning to accept that people come into my life for a reason and God has a plan for that person to talk to me and inspire my hurting heart. They may be there for a day or they might be there with me my entire life. People can make me uncomfortable and nervous but they also teach me so much. Jadon, you've taught me how to fully live and how to fully love. You gave me hope and put the light back in my eyes. You taught me how to dance in the rain. Thank you.
Dad you taught me that even when the bad things come we will rise out of the ashes. You taught me that each of us is given a gift and a weakness and that its what we do with both if these that makes us who we are. You love our family and you taught me that they're are good guys out there in the world when i thought that all of them were out to hurt me. I want to marry a man just like you.
Mommy, you inspire me daily. You are strong willed and have a way of getting everything done. You are an amazing Mom to all of us kids and without you none of us would be who we are today. You laugh with us and you cry. You give us life in a different way. You help us see the bad out there but then you take us to the top of a mountain and show us the good too. You are a brave and strong lady and i love you so much.
Papa Joe, i never really knew how much you meant to me until you weren't here anymore. You fought for this country and you came home. You married an amazing women who could never have been any less perfect for you. You saw hardship in your life and you pushed through and you made sue that you kept your family strong even when you all didn't feel it. You were a GREAT grandpa to all of us and you will be in our hearts forever. I love you.
Jake, dang bubba there is so much i could say about you! You are funny and the best lil brother ever. I love how much we look alike and how similar our laughs are. You underestimate yourself, you doubt you strength and your power, but you are the most willed 12 year old boy i have met. i adore how we both can fall in love with songs that everyone else thinks are dumb but we hear the message not just the words. I love how you come to me for advice and for someone to just be near you. It means so much to me that you aren't embarrassed to go places in public with me. I hope that never changes. Thank you for being my secret-keeper and my best friend ;) Dani loves jaa!!
Ya-Ya... you are insane. haha, but you are a good sister. I dreamed of Mom having another girl but never in my wildest dreams did i see you coming into my life. We have our days...and weeks. But we have so many crazy memories in the short time that i have known you. I'm sorry for being a bad role model and a bad sister. I do love you sometimes its just hard for me to say),;

I dreamed a dream in time gone by when hope was high and life worth living. I dreamed that love would never die I dreamed that God would be forgiving. But the tiger comes at night with its voice as soft as thunder and it tears our hearts apart and it turns our dreams to shame.

I love you all, Dani


Friday, October 11, 2013

Love. Love. Love.

             

Sometimes life drags me down and fills me with the devils lies. Lies of worthlessness and failure of not doing something better for this world... for letting my loved ones down. These days have and my guess is always be very hard for me to cope with. Homework is a pain and i keep finding myself sliding behind. I came from a school of around 100 and now there are 200 freshmen, and tons more. Sometimes i get really lost in the crowd and it makes me feel uncomfortable but other days that is what i want...to just be lost in the crowd.
                It was also very difficult to go from a school were we prayed before every class and we took prayer requests. People would ask me how school was and out came the fake smile"its good" it was lame even to my own ears. For the first few days i was a mess a crying, broken mess. I couldnt believe that i had chosen to leave Faith. My school that i had learned to love. i would go to the bathroom and cry just full out ball. I was confused with why i had done that and wondered if my parents would let me go back. I never asked to leave though, i have no idea why not but i simply didnt.
But then it happened...Something completely unexpected for me. We had a speaker from "Rachel's Challenge" come talk to our school. Rachel Joy Scott was the first murder victim  at Columbine High School in 1999. She was all about being nice to everyone and she had a dream to help fellow students and to lift up their hearts. She did an amazing job at showing kindness to the least of these. And now hundreds of schools across the nation have accepted Rachel's  Challenge. After the initial conference are school also had a "Friends Of Rachel" meeting. Where a smaller group of people who wanted to be there could tell their stories and think of ideas to make our school a happier friendlier place to be. Our leader who came to speak to us was at the part were he asked for testimonies of a time when you needed a Rachel or were a Rachel or you had a Rachel. Awkward silence filled the auditorium and people looked at one another. Each of us had a story but we were all to scared to stand up in front of at least 70 students and pour out our hearts. I was suddenly overwhelmed by this pulling inside me that somebody in the room needed to know my story. Somebody needed to know that they weren't alone. (i hate talking in front of people even people i know. I was terrified and would avoid it as much as possible even if it meant hiding in a bathroom stall) But then my hand was in the air and i was standing in front of this huge new school full of strangers and people who were very able to judge me. My story with every detail flowed out of my mouth and was left floating in the air waiting for the students to reach out and grab it. To look at me and try to  imagine my life in that certain place. To my surprise 6 other people stood up and told their stories as well. I had promised myself that i wouldnt ever tell my story to anyone that didnt already know. But its out there and i have no regrets. I have an amazing tight bound with the kids that were in that room. Those kids who introduced themselves to me and then crushed me to their chest. They are my friends. My community. My strength that change is good. I dont think i have ever seen so much love come from so many people just to me. My sister recently came to my school and once we got home she asked me who "My Dani" is. I am their Dani. And that is one of the best feelings to have. Acceptance and love. Its wonderful.   


                                                      Mya, Sally and Sedar <3

Photo: This little boy will be waiting up for the tooth fairy tonight.


Jadon... i was having a rough day but this made my heart soar. First Tooth!!! Your strength will always amaze me. You are so grown up and hansom! I love you with all of my heart bug.

These kids will forever make me happy and they are always with me. Always and Forever.




                                                Lucy the smiling wonder




                               Nora Madison



              Miss Gwendolyn...and Baby Strong!!!!!


                                                          The Lunt Family


                  Ohhhh and i haven't told you how stinking excited i am for the new baby strong!!! I screamed for a really long time...im still sooooo pumped. Cant wit to see this new little one...so cannot wait!            


(This has absolutely nothing to do with SMA  but i wrote this story at school...thought you all might enjoy it...tell me what you think.)
                               *warning it's a little depressing...justa heads up* sorry...



Hair whipped into tight curls, grayish blue eyes clouded over,filled with the uncertainty of her life. The dark clouds finally unleash and a hard rain starts to crash down to the earth. People scurry into small businesses but she makes no motion to follow the crowd.Just stands there with her stare looking up into the crying sky. Passers by look into the mystery of this child and attempt to tell the difference between her tears and the down pour. Who does she belong to? Why is she not going inside?  Does she need help? They simply push aside the questions inside their heads and don’t communicate to her, they just pass by and run into the stores and soon she will only be a figment of their imagination just a teen in a crowded street, just one in a million. What if they had stopped? Maybe offered her an umbrella or some coffee in the nearby caffe. Simply asked her if she was okay. Maybe they would have made a difference. Im sure they would have made a difference.

One hour passes, then two and soon the streets aren’t covered with people. But the girl still stands by the street light. The rain has slowed to a slow pitter patter,just a sprinkle. And then something changes, the girl moves. Its not much just a little footstep but her whole world rocks with the weight of a position change. Like a ghost she hovers away and leaves the surronding few behind. She was only leaving the vacinity, but tonight would be different. Tonight she would end the pain inside her for good; she wasnt just going to walk away from the world but she was going to leave it and fly into eternity. Did anyone even consider this fact when the saw her? She has nobody, her parents are rarely home and when they are her life is even worse. She won't run to anybody because she is too scared to be hurt. Human Services has taken away her little brother and in the process her joy. She is constantly wondering if he remembers her and if he misses her the same way she does him. She cries herself to sleep every night because of the fact that they only took him and left her. Alone. Horribly and utterly alone.
 She walks into her trailer park. Birds chirp into the eerie dark shadows behind the dumpsters, a shrill cry straigens her spin and makes the hair on her neck stand on end. Her heart beat skips into a faster rhythm and pulses her legs into a run. By the time she is on her front porch the tears have started again and she shakes with the uneasiness in her stomach. Crashes behind her send her into a panic attack. She fumbles with the cold steel doorknob and finally jams the key into the lock and turns with all she has left. Slamming the door behind her she she spins the deadblot then slides down the dilapidated door until her head rests on her knees. "Why!?" she screams out into the darkness of the small house. There is no answer though ,like always. Ringing fills her ears and small tears pool in her stormy eyes once again. "Okay,okay," she pulls herself up to a standing position then wanders into the small kitchen,"you're gonna be okay, everything is going to be alright."  She continues the pep-talk to herself and tries her hardest to push out the doubts that whisper into her soul. She finds a pop-tart and scurries down the narrow dark hallway towards her small room. Crumbs fall in a path behind her dirty feet and from a dark place inside her a memory of pain hits her in a way of nausea. Confused and hurt by the pain she remembers she falls onto her mattress and buries her head into one of her little brothers shirts and screams until her voice is raw and bile rises up inside of her. "Mommy...why did you do this to me? i need you!" Hate forms in a familiar bubble in her hard heart as she replays the last time she was with her Mom. She had been high on too many drugs to even name her own daughter and she had only wanted money for more. Not even caring that her offspring was sick and lonely and slowly fading away. She had long ago dropped out of school and now spent her days standing outside of stores and watching all the happy families walk by her and she allows herself to pretend that she had been born into a family that had cared about her. Everyday was the same though nobody even looked at her, she would attempt to smile but the action was so foreign to her that she wasn't sure it showed. They all passed by her and crinkled their noses at her. They pulled their kids closer to them and sometimes would even move to the other side of the street to walk. She had been going out to different spots in town for about a month now and she had yet to see a caring,friendly soul. She knew that her parents didn't love her and she didn't know about any other type of family elsewhere. She so desperately wanted to know that someone loved her, and so she stood out there on the street corners hoping for at least a smile. She felt unlovable. Unwanted. Worthless. No good. Empty. Devastated. and so here she lay on her 'bed' and wished for someone to love her. She has a plan for the night and its not to go out with a group of people, but to end her life. Nobody wants me she thinks to herself and nobody will miss me so wants the point. She thinks of Aidare. He’s only four, he might need me. “heck! he cried when he was taken away from me...but now he has a family who loves him. He probably doesn’t even think about the life we used to have.” Her mind fuzzes out to a clouded flashback. Its not just a flashback though its real. Dark water creeps up onto the shore and the rented white two-decker boat leaves the dock. “Mom...why did you bring me along? You never took me anywhere but that night you did…” her light voice is cracked with emotion and pain. Her soul leaves her fifteen year old body and she inhabits her eleven year old scraggly frame. She feels the bight of the fall air, and small kernels of sand fling into her face. Her eyes travel in a lazy path towards her mothers bloated stomach. She had a beer can in one hand and a syringe in her other. People crowded around as if she was the life of the party. They had all boarded the boat by a small wooden plank balanced tediously on a rail. She had dropped down onto her torn jean knees and hobbled up the bored her breath was ragged and splinters punctured her flesh. The pain caused by the fragments of wood was nothing compared to the ache in her heart. The party had gone on for hours with the childish adults drink heavily and inserting drugs into their jacked systems. She hadn't wanted anything to do with their games and stupid actions so she found a corner and sat there rocking herself back and forth, back and forth. Her eyes began to drop and dreams dared her to give in to the pressure. She finally gave in and sleep found her and curled her up into a velvety soft blanket. She dreamed of a trip she had had with her Grandmother when she had been no less than 5. “Almost as old as Aidare,” she thought deep down in her soul. They had driven in Nana’s run down car on fast roads with tons of cars that pushed and prodded their way into spots. They had spent the night at hotels and had spent countless hours in pools, and every morning Nana would unwrap a different flavor of a poptart and pop it in a toaster, they would eat them and once we were done scrape all the crumbs onto a plate and make deformed little smiley faces and houses. We could spend a whole morning doing our breakfast art and laughing and teasing. She gave me the most unbelievable memories, but Nana had had a heart attack on the last day of the trip. And she had watched her grandma die...Nana lost control of the car and crashed into the guardrail. The nurse would later explain that she had lost consciousness when nanna spun the car, but still guilt burned inside of her. “i could’ve helped,” she whispered through sleep. “I could’ve saved her… she could’ve been my family. I wouldn’t have been on this boat.” But a scream shook her back to reality and suddenly she was back at the party surrounded by chaos. People ran around grabbing towels and water. She rubbed her hand in her eye then forced her wobbly legs to hold her up. The problem seemed to be coming from a woman screaming on the deck, she was laying down and sweating profoundly. She tip toed over to get a closer look and what she saw sent her stammering backwards. Mom. She would later come to the realization that she had overdosed and sent the baby into a early birth. She had immediately passed out and hit her head into the hard damp wood. Due to lack of food and the aroma of beer and methenamine and the shock that her mom was laying on the ground delivering the baby. Nobody came to help her regain a conscious state, but the sound of Aidare’s new lungs filling with air and letting out a blood curdling scream. Mom had been too high and drunk to even understand what what had just happened and all her friends just went back to the party. By some weird fate the umbilical cord had been disconnected and my mom had simply left Aidare laying on the deck. A small little rose red human all alone, shaking with the bittercold, and whimpering. She crawled over to him her head spinning and her mind racing. As she neared the little body, she slipped of her navy blue sweater and processed what she was about to do. Cracked hands with blood stains reached towards the child. His premie body flopped and she let out a gasp as his head bounced backwards. She tried to get his clenched hands into the sleeves that engulfed him but he was stubborn and wouldn’t cooperate. A cry escaped his purple lips. “hey baby..i'm here,” she cooed,”i’ll be your family. You are mine...and I am yours...nothing will separate us…”and with a smile she pressed him close to her heart and rocked gently in an attempt to hush her brother. she pressed her black converse into the wood and stood up. “i’m Constance… your big sister.” Mommy would call it fate, an accident that he was born that night, but for Constance she called it an answer to prayer, something to give her hope and to bring her life purpose. A stork didn’t bring Aidare, an angel did.
A lamp crashes to the floor as her world comes back into view. Shes not on the boat, she is in her living room surrounded by darkness, and her baby brother is gone. She closes her eyes and like a slideshow she sees Aidare on his last day with her. His adorable little smile and that little dimple in his left cheek. His eyes always had a flame in them, and his tongue always had a story on its tip. He was so not like her, he was always cheery even in the darkest times . He never cried even when Mom screamed at him. He was a dark haired prince, sent from heaven above to keep her safe and sane. He is gone now and no one shows her kindness. Moving from her pain filled memories she wanders into the kitchen, her hands shaking with her every move. Inaudible words flow out of her chapped lips.
The pain no longer comes, the blood no longer flows, her gorgeous eyes glaze over, and the air has ceased from coming from her lungs.

Constance Marie Devers
December 4, 1996 - November 28,2013
Fearlessly she lived, endlessly she loved

230 people attended her funeral...they had just never told her what she meant to them. Little did they know that they could’ve saved a life.
      
   “People will never know how far a little kindness can go…”
                                   -Rachel J Scott





Saturday, September 7, 2013

Got Hope? Walk n Roll...and Stella

This is Stella's story..prepare to be inspired(:


Today was the walk n Roll for FSMA...and it was amazing. Something about seeing everyone there  to support curing SMA takes my breath away and makes my eyes kinda cloudy. It was a great day!!
                                       
                                            My family! Running for the Bug


                                               
                                   Jack didn't just do 2 laps around the lake...he did 3!


                                                        FSMA leader

               
                                            The amazing a capella group


                                                Attempting to play games;)


                             We didnt have a flag so this kind gentleman "volunteered" to be the flag!


                                      Getting ready for the group picture


                                 Sweet girl from New Mexico came just for the run with her Daddy
                                                           


Starting off!


                                                      Kids helping kids:)


Me and my fantastic brother at the end of the race

               Jake came in 17th place, Daddy came in 19th place, and i came in 23rd place


I like this picture cuz he claims he wasnt in pain...righht;) haha love you dad


Amazing leaders


Hanging at the end


                                               Great day shared with great people.

                                   Thank you to all of you who made this day possible

Wednesday, August 28, 2013

Wednesday, August 14, 2013

I love someone rare and beautiful

....well actually a lot of someones(:
School starts tomorrow for me and so i wanted to write this now because I know i won"t have time to on Friday.
August 16th...Skylar Marie Jones lost her battle to SMA. It was the first SMA angle that i experienced. I knew that we all had a short time here on this earth and i also knew that the SMA fighters had a shorter time, but it never really clicked to me until Skylar's death that we are fighting a battle with a time limit for each of these beautiful kids...a time that we don't know how much more we have to help them fight.
Lots of people say when an SMA baby dies that they lost there battle(i do too...sometimes) but my perspective has changed since 2011..Skylar lost her battle here but she also won her battle. She is cured now!

When Skylar died it hit me really hard...i was mad at God for taking her away. Okay I was furious. Im not proud of it at all. Because I am just a little girl who He made and he will take away. He made Skylar for a purpose on this earth and she fulfilled it.
I still ache because i felt so so so close to her. I loved her and I still do very much. She taught me so much, when she was here with us and when she went home to be with our Father. There are days and moments when i feel like i can feel her smiling down on me...through a little sprinkle of rain or the glorious moment of watching a beautiful butterfly fly by you. Through all these little things I remember the purpose that God has for each and everyone of us. And I think of those who completed their purpose and my heart has peace...

Skylar Marie...
Keep flying high sweet angle. You will always live on in my heart.
Love you



My favorite picture of the butterfly<3


Monday, August 5, 2013

SMA Awareness Month



August is here, which means back to school shopping and getting everything ready for us kids as we head off to school for a new year. But, August is also something bigger than getting new pens and pencils...its SMA awareness month.
Getting the word out about anything is difficult and taxing,but there are so many parents out there who are giving it everything they have to get the word out about their sweet child and all the others who are struggling with it too. They have the strength to keep fighting for their baby as they fight to keep going too. They might get discouraged but they take one look at their child and its all worth it.

Here are some of those devoted parents...



Goodentree-9596

Mothers day







They will never give up and they will always keep fighting because they know that it is so worth it every tear they cry,every time they sweat. no matter how many times they fall they will always get back up because they love and love and love...spread the word, get it out there,save lives...