rekindled spirit

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we planted an apple tree for her in our garden then had birthday cake and fighting tears we sang happy birthday to her as the breeze blew out the candles one at a time- just as she would have done it.  it is with sore hearts that we celebrate our sunshine’s fourth birthday today.  

she had a thrilling way of being wonderful. she had so much love to give- so beautiful inside and out, so very special. you see, at her very young age, she had a soul more beautiful than any that i have ever known. she was kind, considerate and respectful as she surprisingly often asked permission if she could do something. and she was funny. she would crack herself up laughing all the time and us too. she loved books. her intelligence amazed us when she began reciting at the age of two from memory wilhelm busch poems that her papa read to  her every night. every night she knew exactly what she wanted to hear. if it was a story from one of her anthologies, she said what she wanted read to her then knew exactly where to find it.  although not uncommon for someone like her that is born into two languages, it was amazing for us to witness her understand everything i said in english while she always answered in german. she loved to dance and when she would sing, i would tell her how beautiful her voice is so that she would sing some more. it was breathtaking. i could never help but smile from ear to ear.

when i think about her last months, i realize how bravely she endured so much and clearly fought so hard to live. we, my husband and i know now the delicate balanced involved, the exquisite beauty and love that can exist in an instant of breath, in one solitary glance. her memory and these remembered expeiences do give us strength and faith to understand that she chose us as her parents for a reason. we are forever changed, and without question better people to know her.  she had a passion for life.  she wanted to learn everything. she loved challenges. she wanted to play guitar, piano, she loved to paint, and most of all, she was eager help in the kitchen. the other thing i realized is that she had incredible memory. she recalled people, places, events- she would talk about when this happened or when so and so did or when we were…..it is astonishing.   

she had dreams, she had wishes, we had plans. she wanted a really, really, big swing so she could swing into the clouds like heidi. she couldn’t wait to go back to kindergarten and see all of her friends again. she wanted a garden birthday party again this year, this time only pink balloons. she was excited to attend ski kindergarten for the first time this winter. she would have been old enough to go to musikgarten as a graduate of the mommy and me group and was beside herself with joy that her little friend marlene would to join her too. she wished her brother could go with her to kindergarten- they share a love that i enjoy knowing.

it breaks my heart to talk about her in past tense- as crazy as it may sound, i often try not to do it.  we think of her every single hour of every day, she is so deeply missed and will never, ever be forgotten. happy birthday our sunshine, our little angel.

we were in the center of uberlingen. i had just picked up a letter from my doctor’s office and we were on our way to pick up bodensee apples to take to her team of doctors and nurses at a hospital in munich- it’s name will go unmentioned for now. she was released from this so called prominent medical center just thirteen days before- she had a follow up check up there the very next day.

i drove approximately 50 meters away from my doctor’s office when she started shrieking like i’ve never heard her before. i immediately stopped the car and went to her in the back. i cannot talk or write about what happened from that moment until help arrived. she died on the way to a local hospital although they gave up on rescuing her fifteen minutes after she arrived there and was then pronounced dead.

we have learned that she had a violent seizure from which she could not recover. i have been saying until now that she started dying in my arms but the truth is she had been dying for months according to the pathologist.

a supposed internationally renowned german hospital where she spent over four months sent us home with her dying and a slap in the face- slew of manipulated data and altered information on her release forms.

they failed, i believe on purpose to exclude a fatal disease. how can an entire team of medical specialists ignore to diagnose endocarditis after a patient has had a cv line in for over eight weeks???

sophia had full blown endocarditis that ate up her pulmonary valve, spread through her heart forming abscess in the cavity between her heart and lungs, through her lungs and into her bloodstream.

as if overwhelming grief and sadness isn’t enough, we are filled with rage and anger knowing her death could have been prevented. we are devastated and do not know how to overcome our loss- and what a loss. it is all we can do to function for our little boy, to help heal him for he too is damaged from his loss.

my husband told me the other night to please make sure that i let him die at home if ever he is sick. he said he would rather die than have these doctors play and experiment with his life like they did to our sophia. our faith in the german healthcare system is shattered. what happened to her, everything we saw, what was said to us, how she and we were treated we will tell in good time. no amount of money interests us- money will not bring her back and to not tell our story would mean she died in vain. we want every parent that considers to put their child’s life in the hands of these doctors at this hospital to know what happened to our sophia that they can make a better decision than we did- that they avoid making the mistake we made. 

it has been difficult to remember our sophia the way she was before we took her to this so called reputable health institution last february. i haven’t slept a full night for over six months and now that she’s gone i stay up all night thinking of everything she said and did when she was in that hospital. i cannot get off my mind her last four months. she cried so much from fear and pain- she was traumatized and with no doubt in my mind, i knew she would never be the same again. we were all so happy and relieved to be home with her- our biggest problem when we got home was how to heal her from everything she had experienced in her last four months- and we were ready to do it.

we are in austria. we have returned to montafon the mountain ranges in the alps that sophia fell in love with last year. all she talked about ever since we left here is how she wanted to go back to den bergen, the mountains. she especially loved the little village of gargellen, snug between a valley at 1423 meters and up on a mountain at 1966 meters. we were astounded at how perfectly she pronounced gargellen. i think she fell in love with it because it looked like the village where heidi lived with her opa.

oh how she fell in love with the mountains. she would run up ahead on a hiking trail, spot a rock, figure out a way to climb it and sit there waiting for us to catch up. then she would call out mach ein foto! take a picture!  and instantly flash a beautiful smile. she had always loved wild berries and when she would find some on the side of a mountain, we were immediately ordered to stop and take a break until she picked and ate as many as she wanted. exhausted at the end of each day, she and her brother without conflict or disturbance fell asleep soundly in the same bed in a room attached to ours- we were grateful and amazed- it was the first time they shared a room.

we have been desperate for memories of her. we have come here to remember her- to remember her the way she was before she we took her to that hell of a hospital. when we have been out hiking the last several days, i feel her walking beside us, in front of us, or tagging along behind. every now and then, i look to my side, up ahead, or turn to look behind. i whisper to her softly are you here? are you really here sophia? i get a warm feeling all over and can’t help but smile to myself for i really do feel her. i know she is with us. i know that she is always with us.

 31.08.2004-06.24.2008

on the 24th of june, the day of st. john sophia’s guardian angel said:
“dear sophia, on this solstice day, as that the sun is rising through the highest path in the sky, god spoke to me and said: take sophia’s hand and guide her across the sun’s arch back into heaven.”
and so it happened.
all the butterflies, bees, bumblebees, and lady bugs accompanied sophia as she ascended into heaven. the angles danced in the air and the nymphs revived the water of all seas, rivers, the trees, every mountain and meadows. and all living beings were surrounding Sophia.

am 24. juni, am johannitag sprach sophias schutzengel:
„liebe sophia, am heutigen tag der sonnenwende, da wo die sonne ihre höchste bahn am himmel zieht, sagete der liebe gott zu mir: nimm Sophia an der hand und bring sie auf dem sonnenbogen wieder zurück in den himmel.“
und so geschah es.
und die schmetterlinge, die bienen und hummelbärchen, und käferlein begleiteten sophia auf ihrer himmelsreise. die engelein tanzten in der luft und die nympfen belebten das wasser der meere, der fluesse, die baeume, alle berge und felder. und alle lebewesen waren um sophia herum.

the words of frau lut lernout to our son, my husband, and i. our sunshine is gone. we are so sad. we are so broken.