Wednesday, May 9, 2012

DON'T GIVE UP

May 8, 2011
One year ago on May 8, Mother's Day...
Calli was putting together a trampoline and got a pain in her back...
It hurt so badly that she could not even jump...

 Did you ever go in a flight simulator?  Where you flip upside down and all around, and go headfirst into the ocean, only to flip right straight up again before you hit the surf?

Or on a tilt a whirl?, and you are on it, but don't want to be on it, and someone keeps turning that dumb wheel to make it go faster and faster and faster in one direction, and then boom, you turn the corner and you are hurled the other way.....
I never did like those things.
They always made me so sick
I would lose all sense of direction 
and reason
and balance
Holding back the barf, as it crept up my throat.....closing my eyes tight and holding on and waiting to regain center....
It's kind of felt like that for the last year.
 This month is such an emotional and unreal time for us.
Everything is hitting the fan.
My dad is gone...it is still unreal
My precious mother in law is gone....
My kids are so sad, and mad, and at times it just hits us all at once...

daddy carries Calli a lot

Calli has been having a good time of it trying to walk, eager to move forward,  in yet another new normal..

 she was getting stronger, and then she sprained her ankle-another set back, and then she got an abscessed tooth- does it ever end?  
recently, her face and body have had to endure so many drastic changes from the steroids they have her on.  If you see her- she is not fat, she is swollen.   It hurts her though, she is in no way a vain person, and no matter how much we tell her how beautiful she is....she still does not want to look in the mirror at her own face.  
before steroids- in February
She feels lost in her cheeks. 
After Steroids- May
  She said with tears yesterday, that she has lost her chin.  The tremors that make her hands shake and unable to write effectively are bothersome and the acne, dry skin and horrible stretch marks just add to the yucky effects from the steroid-Decadron. 


videothis song is for you Calli :)
a lady bug said hello to Calli last week

 This month is full of promise...but those promises, are strapped to the backs of pain, and hurt, and loss, and death.
With death comes life.
I don't think anyone can realize how much Calli has lost, how much of her has died.  No friend, or family member can see it or understand it or even know it, unless they are with her, caring for her, helping her, watching her and being with her each day...
Aidan is one of those people.
He feels bad going outside and climbing trees, or running with the dogs...
he knows she is watching him .....in pain, in sorrow, in yearning to be free and run and jump and climb like he does.
Aidan and Nana did the "Rocky" steps, as we watched
 The other day, he was so upset, and having a no good, bad, really horrible kind of day....
I just thought he was mad and being a booger
At the end of the day, as we were tucking him into bed, he wrapped his arms around me and cried.
"Mom, I thought Sissy was dead today....I saw her laying in the hammock and her eyes were closed, and I did not see her breathing, Mom... I thought she was dead."

Could you imagine the world that is on his shoulders?

Inside of his 12 year old heart, mind and self.... he holds secrets that none of you know or are aware of.  
Inside of him, he holds hurt and pain and loss and death.... pictures in his memories..constantly parading on the forefront of his mind, all day, every day.
He puts on masks of anger, and toughness and hides his hurt, his pain, his fears.
Can you see him?  Can you see past his masks? 

Do you remember when you were 12?  How easy it was, but how hard it seemed, growing into a new body, new emotions, new hormones...
now add to it- loss of your two best friends- your grandfathers,
and add the loss of your grandmother
and add the fact that your sister has this monster she is fighting....
and your friends have disappeared
and everyone takes everything  personally and blames you
and the people you look up to, and trust and depend on for help and acceptance and guidance let you down
blame you, don't have time for you....
give up on you...
Could you...for one second, or minute pray for Aidan?  Please?
hanging out in bed with my Sissy


 Calli and Aidan loved bell choir.  It was a struggle, and very hard each week, but Calli and Aidan pushed through.




Thank you to all who came out to see them both ring and support them- it meant the world to them.
 Calli was honored by the choir members for her perseverance, and was told that the choir can't replace her, and that they have all learned from her strength and dignity through the last year.  They presented her with two of the bells that she rings-with the engraving of her name and "In Christ Alone, my Hope is Found."


 All over the world Life presents us with conflict, and disagreements, and relationships that are done wrong and out of order, people are misled, lies are told etc....  
People all over the world have two choices.  Stay quiet, or speak up.   At times it is appropriate to do both- have you ever read the bible?  It was and is never a popular thing to speak up.
People pay for speaking up.  
It is a risk, not many are willing to take.
I have taught my children, that if they see something wrong, they must speak up, they must take that risk- they must count the cost and take courage and do what is right.  

When my children are in the line of fire, or being affected emotionally, physically, or spiritually in a matter, or a situation, being blamed or talked about-I will always speak up.

Sadly, instead of facing and working through a matter, a simple matter, people find easy ways out- the same ways out that have been used for thousands of years- avoidance, shifting blame and shunning.  

It hurts to be "Let go."  It hurts to be cast aside, It hurts to be given up on.  Someone told me once that maybe conflict is God's way of  showing us who he wants us to surround ourselves with...not saying we should not be around people that irk us...hey, I am one of  them!  What I'm saying is, for right now...my children are hurting and needy and need special care and grace and hearts that will love them and accept them and are willing to see past our outsides...to our hearts.  God has a way of revealing things , revealing hearts through conflict, through bruising, through disagreements.  His way of revealing is strange and always creates an environment to learn and grow.

I know that Mike and I do not want people around our children right now that will give up on them, reject them, or un-invite them into their "Ministry."  
 It is God's ministry anyway, isn't it?  Aren't they all?
 Who did Jesus minister to anyway?
The perfect?
the law-abiders?
the calm ?
the sane?
NOPE
 the rejects!
the outcasts!
the insane.!
the angry!
the hurt!
the lepers!
the law- breakers!
God's ministry is to the poor, 
the needy..
I'm not talking about money either..
I'm talking about spirit, the poor in spirit, 
the needy ones, 
the ones that need you to believe in them, 
and HOPE the best for them, 
and teach them to overcome
the ones that need you to help them heal and move forward
the ones that need you to look past their faults...
 right to their needs- 

the needs of a 12 year old boy...
he needs people to believe the best of him 
he needs people to never give up on him
he needs people to accept him, not reject him 
he needs real Christians who are "willing swear to their own hurt and change not" their words, their commitment that they made to him- to teach him...no matter how hard the winds blow or how loud he gets, if he is wiggly, or giggly or angry or sad, or misunderstood or needs to explain or explode...

 One day some parents brought their children to Jesus so he could touch and bless them. But the disciples scolded the parents for bothering him.
When Jesus saw what was happening, he was angry with his disciples. He said to them, “Let the children come to me. Don’t stop them! For the Kingdom of God belongs to those who are like these children.  I tell you the truth, anyone who doesn’t receive the Kingdom of God like a child will never enter it.”  Then he took the children in his arms and placed his hands on their heads and blessed them.

Do you think those kids were perfectly quiet, or still, or had the greatest manners or respect for their teacher, Jesus?  
If they were normal kids, and I am sure they were...I bet not.
 All things are made beautiful in His time

When things like this happen to a child who has already been through so much, already been through the ringer over and over and over again.. it makes me think how on earth people can be so blind and prideful.  This makes me think very deeply and sadly...I wonder how God feels about it?
Aidan, my little man,
 you are an ordinary ODDBALL, 
you are loved, 
don't give up




23 comments:

  1. We have not forgotten your journey. We continue to pray for all of you

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  2. I feel as if I am there with you during this. Your posts are so inspirational. Would have loved to go to see & hear the bell ringer choir - was it recorded? What a wonderful post that would be. We do not forget Aidan or either of you as you care for Calli. We pray and trust. We serve an awesome God - Greater is He than he who is in the world. She is beautiful no matter what.

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  3. My husband and I so enjoyed the bell choir. I could have listened to that for hours. I could imagine Christopher sitting beside me and listening. I think of your family so often. I'll be in touch for that cup of coffee. God Bless.

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  4. Thanks again for sharing from your heart. I cannot fathom anyone being cruel or rude to your children or family, ever. You all are in my prayers consistently.

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  5. Thank you for this update. I learn something new every time.
    We love you guys.

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  6. I am so sorry that people are not being understanding towards Aiden. Most of us can't understand what he is going through. This age, 12, is a difficult time without everything else he is dealing with. He has every right to be upset and angry, people should be more understanding. Hugs to all of you.

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  7. Iknow this is a very difficult time for all of u and my prayers will always be said every night for the hole family, i wish u all the best of luck throw out these very hard time. yhis is so sad to read and watch amd lission but i do cause i fell so bad for all of u this is a wonderful family. Carol White

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  8. Aidan,
    I'll be praying for you. Just recently, I became aquainted with knowing what it's like to have a close family memeber have cancer. It's hard because sometimes because it feels like everyone is focused on helping your family, but not you specifically. Stay strong! We'll both get through it!
    Lydia
    P.S
    You and Calli did an awesome job ringing bells!

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  9. Calli and Aidan- my favorite great-niece and great-nephew... wait, um, my only great neice and nephew! ha. I love you both so much and it's funny because I know you love me too. That is very good!! :D
    This year is like your mama said, a bad ride! The upside down, get me off I'm not liking this ride. Whew, I hate those kinds. They give you the worst headaches and ruin the rest of the day at the park!
    Hmm. So, it's a crummy year. What should we do about it??! What can we do?? Love. Yep. That's the word from above and below and inside my heart and they even have a cool sculpture in philly that says LOVE. Sounds silly I guess. Or corny. Yucky too! ha. But that's the word, so I'm going to go with it. I'm going to think of all the things I loved so far about this year and give you the list! Here's a start:
    I love pizza, horses, my dog baby, Jane the cat and Butchie the dog. I love reading and being read too. I love escargo too. ha.
    But mostly I love you.

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  10. I read every post, come back for them daily, but never comment. I just have to today because I think it's important that you know that people DO stop and think of your family. Life going on around you can not be easy for you-I know this all too well. You are an amazing woman and mother. My family has been going through our own journey of our 3 year old being diagnosed with a brain tumor for the past 3 years. I know that upside down feeling. I know the pain, anger, sadness, confusion, desperation, and the evil of Decadron. I know that I prayed long and hard for my son's tumor to leave his body and be in mine. I know the feeling of being able to wake up and push forward another day as long as my son is here. I will most certainly continue to pray for Calli and Aidan. I only wish that I could do so much more.

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    Replies
    1. Thank you for that loving note to the Derstine family. I'm certain that Lucy also wishes that she could do more for you too.
      My prayers are with you, your son and entire family too. Peace to you. And if you get this in time, Happy Mothers day too. :)

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  11. Calli and Aidan, everything your Great Aunt Alison said is true!! It's all about LOVE!!! And your Great Aunt Terri loves you BOTH so very, very much...along with your Mom and Dad!!! You are all so very precious to me!!! If you ever need ANYTHING, please don't hesitate to call. Or if you just want a night away from your Mom and Dad, haa, haa, tell them to go to a movie or out to eat on a date night so that your crazy old Aunt Terri can come and hang out with you!!! Just know that each and every one of you are in my thoughts and prayers every day and although I may be total opposite of your Grandmom, my big sister, there is one thing we both had in common, and it goes back to what your Aunt Alison said, it's the LOVE for you we have in our hearts, mind and soul that NOBODY can ever take away!!!

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  12. I am going to first start out by saying Calli you are in my heart and I am really sorry for what has been given to you. You are a beautiful strong brave girl. Do not let anyone tell you different. No one deserves everything that the family has been through. But on the note about speaking up, the way Aidan acts was there before tradegy struck.

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    1. Wow. I am shocked and sadened that someone (whoever you are) would post something on a public forum about a kid. Boys are boys, from birth they have pockets full of toads! The only cure for is love. Love your children right where they are. Good advice for anyone really.
      Your words (that I bet have been read by Aidan), were unkind and inapropriate. You should apologize. It is very easy to condemn others when we are annonymous.
      I have worked for over 17 years directly with students of all ages (not counting my own) and I believe that this young man is pretty normal. Does he have moments of pranks or mischief? Of course, and if he didn't then I might worry! He is a 12 year old boy. I think boys act like boys as soon as they can walk!
      Yet he is very capable of also being a gentleman. Aidan is helpful to others less capable then himself, and that is what a gentleman is.
      No one should ever condemn anyone in a way that leaves them defenseless. He is not going to comment- his feelings won't be heard. Right? His mom may defend him (I wouldn't blame her one bit), but not him. Walk a mile in HIS shoes- not his mom or dad or Calli, but his shoes and then listen to your heart and lighten up.

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    2. I am a friend of Alison's and have followed your story for a while now. I have read your posts and felt your pain. I am a mother to three young children and what you have gone through is unreal and yet you still keep faith and praise God. Your family is one to look up to, certainly not one to be unkind to. That being said, I read this post from "Anonymous" today and have felt so enraged. Who is this person who chooses to attack a young boy and family at this most tender time? Who is this "anonymous" coward who has something to say but cannot admit their identity? I have a question for "anonymous": if you have seen there to be some kind of problem or issue that Aidan has gone through, have you tried to help him? You act as if you know him, so have you tried to mentor him or be some kind of role model in his life? So basically "anonymous" you have stood by, watching a young boy struggle, and done nothing to help him. Not lent a helpful ear or made him feel special in any way. And then in an unspeakable fashion you write harsh words to him and his family at such a fragile point in their lives. You are a coward and as someone else on this page has put it, watch out for KARMA because it is coming for YOU! This blog is not a place for negativity. It is a place for hope and encouragement, kind words and thoughts. It is a place for the Derstine family to speak whatever is on their mind. Here's a lesson everyone except for "anonymous" learned around age 5: If you don't have anything nice to say, don't say anything at all!
      Derstine family, I think of you often, strange as that might seem since I am a stranger to you. I pray that God brings you peace and comfort. Your family is an inspiration and I can only hope that in times of trial and pain I can deal with things as graciously and with the kind of courage that you have shown me is possible. Thank you--Colleen

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  13. To anonymous:
    in reference to your comment..."the way Aidan acts"
    you write as if you know Aidan, know how he "acts" whatever that means....
    you also act as is you know the situation entirely and have something to say.perhaps you should comment publicly instead of hiding

    Many have a lot to say about Aidan negatively(just like you)
    and about how he may act out on the outside-
    Thank you-you just proved my point
    and also that you have no clue as to what you are talking about, we have had much tragedy for many years before Calli ever got diagnosed that has formed holes and tears and gaping wounds in all of our hearts, especially Aidan's.

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  14. Aidan is an adorable, precious, kind and caring boy with a very big heart! He loves his Sissy so very much and I can't imagine how hard it would be to be 12 yrs old and have to watch your sister have to struggle and fight every day to battle this horrible disease! Their Grandmom, my sister Linda (R.I.P.) told me how she would take Calli and Aidan shopping and give them money to buy something for themselves and instead they would pick out a gift and buy something for each other! Aidan played his guitar for me and he played so very well. He swung from a rope from a tree which made me smile because I remember his Daddy Mike climbing ropes and being an adorable boy because that's what boys do!! Aidan makes me smile and I love his bright smile which can light up a room!! BTW, Happy Birthday Mike!!! I hope and pray with all my heart that this will be the start of a good year for you and your family! And Happy Mother's Day Lucy!! I want to be there the day your beautiful girl Calli walks down the isle in Linda's wedding gown!! Hugs and Love to all of you!! Aunt Terri

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  15. I am not attacking Aidan. Perhaps a structured school environment would benefit him.

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    1. First- the only reason I am allowing your comments to post, is because after reading them, the people who really encourage us and know and support our family will be praying even harder for us, and possibly for you too.

      I am going to educate you on something though-
      YOU ARE INDEED ATTACKING MY SON,
      OUR PARENTING,
      AND OUR SCHOOL CHOICE.

      Definition of ATTACK
      1: to set upon or work against forcefully
      2: to assail with unfriendly or bitter words
      3: to begin to affect or to act on injuriously
      4: to set to work on
      5: to threaten with immediate capture

      YOU ARE GUILTY ON #2 AND #3.

      Aidan read your post, by the way, and cried.
      Thank you for injuring his already bruised and tender heart. You have affected him in a bad way.
      All day yesterday and today, his mind was wondering who you could possibly be.
      Who would be so cowardly as to hide behind anonymity and show public disapproval of him...of his parents? of their school choice?

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  16. Praying for Aidan and for all of you.

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  17. I pray for Calli and your family as my son also goes to Chop for cancer treatment. I have seen Aiden at chop be a very patient young man and we both know the long days everytime we go. You are a strong loving family and keep doing what is best for your family and disreguard anyone that would be so rude and unfeeling to past judgement they have no clue. But they should be careful because I believe in KARMA.

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  18. I am a total stranger, but not really because I am a Christian. My heart just aches for you as I stumbled across your blog and began to read it a few months ago. When you describe the hurt and ache of seeing your children suffer, I just ache with you as a mother. I have no idea what is going on with your son. None of my business, but I have raised a son. He is 22 now, but 11 to 21 were pretty rough years on him. We home school and live a different sort of life style than most around us. But I wouldn't take a minute of it back. I had my child with me during those years of trying to find who he was. I followed my convictions and you keep following yours. You definitely have your child's best interest at heart.
    My prayers are with your family across the miles and even though we are strangers I really feel like I know your precious family.
    BTW I am the person who sent you a donation a few weeks ago through Paypal.I am about to send you another and ask that you do some extra treat for Cali and Adrian.
    Thank you

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  19. Aiden is such an incredible kid! He has a great personality! He is my favorite kind of boy! He is always up for adventures. I am glad God gave him a sister just like Calli. He is going to get to see a miracle with her life. I just know it.

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