×

CaringBridge Is Funded by People Like You

Make a donation to CaringBridge

Honor Ariana and Lucas with a tax-deductible contribution to CaringBridge today.

Click here to make your donation.

Ariana and Lucas’s Story

My angel ^Ariana^ & her brother Lucas have an undiagnosed regressive neurological disease, contagious whole-body giggles & a strength beyond what I imagine. The lessons they've taught are worth more than any schooling. They are lessons of the heart; heart tears.

http://www.onetruemedia.com/shared?p=24243e068a41e9f05de455&skin_id=0&&utm_source=otm&utm_medium=text_url



 

 

 

Imagine your child is in constant pain. You search for answers from the best medical facilities in your area including Innovis, Meritcare, U of M Children's, Mayo but test after test comes back negative. You challenge every doctor to give you answers but sadly they can only tell you that there is nothing they can do to help and you are sent home with no reason to explain your child's screams of pain. You spend countless hours in the hospital attempting to console your child from this ravaging illness but nothing calms them. Insensitive doctors tell you to deal with it. Unknowing doctors tell you to go elsewhere because they don't know how to help you while insurance companies refuse to pay if you go out of your designated medical area. You loose friends because they are uncomfortable with your child's disability or feel guilt that their children are normal.

While normal children make snowmen, your child's body is overtaken with mounting medical conditions like fevers of unknown origin, spasticity, gall stones, bladder infections, kidney stones, loss of visual acuity, undiagnosed infections, chronic gastritis, stomach ulcers, reflux, hyper gag reflex, pneumotosis, malnutrition, pneumonia, chronic diarrhea, delayed gastric emptying, unexplained hair loss, eczema, ear sores, and atrial septal heart defect. Your child contorts their body into pretzel-like shapes to escape the pain but it only results in scoliosis. She no longer sits in her chair properly because of the twist in her spine. He no longer is able to reach and grab items because he fights a mixed tone disorder. Your child is confined to a wheelchair and relies on you for maximum support. You feel slighted when people complain about your child's tendency to grind their teeth in agitation from the torment they are in.

In your attempt to provide proper care for you child, your mailbox is overrun with medical bills. Your days are filled with doctor visits, therapies, insurance battles and appeals. Unexpectedly, some co-workers, friends and family are less than enthusiastic about your time away to care for your child and seem unsympathetic to your situation. In between you fit feeble attempts to parent two children whose only comfort comes in the form of medications like methadone, fentynol and chloral hydrate. You have one cupboard that is donated to your pharmacy collection but sadly this medication works randomly. You think about taking a dose yourself to help ease the trauma you deal with on a daily basis. Your rarely are able to keep up with making supper and doing laundry. You and your family are drained financially and emotionally. You start to question the reasons why this is happening to you.

Despite the devastation, your passion for children makes you forage on. They give you hope beyond hope of finding the answers. You turn to genetics for a reason but the medical community fails you again. They still have nothing to contribute. You spend weeks in Mayo, away from home, family and work but there is no diagnosis. Hospital stays are bi-monthly. Surgeries become a normal routine. You become acquainted with unfair diseases like Rhett syndrome, Leukodystrophy, Krabbe and you hope your child doesn't have it. You hope and pray for many things but mostly for your child to have peace. You feel helpless and lost because no one is able to tell you what is causing your child to hurt.

This is only part of the struggle that 7 year old Lucas and our 6 year old Angel ^Ariana^ Kaseman have faced in their short lives. This disease has stolen their childhood and keeps us frantic with worry. Their story is a sad reality of the demanding struggles we face in trying to find a diagnosis. Without it, medical management is futile and it is exhausting to try to bring comfort where no comfort can be found.

Around every corner and in every hallway, the cries of Ariana and Lucas are always there as a constant reminder. It never lets us rest.

Ariana's life was taken at the age of 6 on February 23, 2007 and Lucas lives at home wrapped in the arms of his loving mother in Fargo and his brother Alex, age 9.

Latest Journal Update

Untitled

I've been trying to think of something inspirational to say today. Something that would create a war amongst hearts or a fire of fierceness for all mankind.  I've settled on keeping it wild and untamed, without thought or review.  Prepare yourself.  After all, Ariana never spoke a word and yet created lasting inspiration.  She never wrote a sentence but somehow seemed to set a habit of remembrance across hearts.  Days come and go as quickly as her life.  She would be 14 today.  I sit and stream through what's left of her memories.  I'm most surprised that I still care for the fern I received at her funeral.  Despite my lack of a green thumb, it's still alive and relatively pretty as far a ferns go.  On the other hand, the tree planted at her school doesn't seem to be sprouting like I want it to.  I sent my unsuspecting landscaper friend to check out the situation.  Despite my skepticism, he said it's growing to be a fine young sapling.  I must have looked confused because he added that oak trees just take a few years to look "healthy", then suddenly they take shape.  That seems fitting considering it's Ariana's tree. 

I don't want to take away from this day but I should mention that Lucas still remains healthy and full of laughter.  In fact, I can't even recall the last life threatening event that has settled into his body.  In a twisted way, I'm almost jealous of our life.  We've spent so many days on edge.  He even has a tan on his legs from spending time outside.  We take him every where we can, while we can.  Not shockingly, he's getting bigger than I think he should be.  His feet touch the floor when he sits on my lap.  And yet, he's still small and fragile as ever.  And in this moment, he is healthy and that is more precious than one can ever imagine.

Alex is amazing and infuriating all at once.  He takes little interest in anything that I feel is beneficial and still remains a soft bright light bulb glow of a kiddo and many times, quite laughable.  It will be interesting to see how the next few years unfold for him.  I'm hoping his fear of insects and amnesia for washing his hair while showering will become a thing of the past.

As for me, I have found a fair balance between working hard and playing hard.  My circle of friends, while few, is strong and heartwarming.  My family, those who choose to be near, are my true backbone.  My husband has taught me perseverance and the true meaning of never giving up.  I'm hanging tightly to this time.

heart
2 people hearted this

Comments

6 Comments

Sara Welder
By
So great to hear from you. Think of you all so often! Hugs!
sue Baumgartner
By sue Baumgartner
I miss Ariana and her bright smile. My, the years go by fast! Take care of yourself.
Sherri Nelson
By Sherri Nelson
Wow, Teresa....it is hard to believe that Ariana would be 14, guess that time has slipped away from us! Glad to hear that Lucas is healthy and doing well! Alex sounds like spitfire that keeps you hopping! You sound well! Another school year upon us, much too quickly!

Be well.....
Trina Lewis
By Trina "momma Lewis!"
My precious beautiful family! Teresa my heart is with you on this most beautiful day and yet the bittersweet thought of not being able to hug your beautiful daughter is so true and personal for me too. I know that Ariana is watching down on you and smiling with the thought of you hugging her. She is sending the rays of sunshine down to Lucas and Alex and watching them parade around in life. I love you to the moon my dear Teresa! You all make my life so wonderful!
Elaine Jorstad
By Elaine
Happy Birthday Ariana! I thought of her today as it lands on the same day I struggled with having Lucas on his last day in my class. Sad :-(
Cari-Ann Nostrum
By Cari-Ann
I can't believe she would have been 14! Doesn't seem possible. So glad you posted the updates on the family-I think of you all often and wonder how you are doing.
heart
1 person hearted this