darkest hours
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.
Shin Young
August 16th, 2008 at 9:04 pmDearest Elsa,
It is so good to hear from you. You bring tears in my eyes. First of sadness and Machtlosigkeit about what happened. Then feeling tears of softened joy that you can feel her being with you so well returning to the place she loved so well. Perhaps unknowingly she knew what was to come and felt high up in the mountains you really would be closer to her. I’m sure you took many pictures of her everytime she said “mach ein foto!”. See her beautiful smile in your minds and you’ll remember the happy times together. In my minds I travell with you
somepinkflowers http://somepinkflowers.typepad.com/
August 18th, 2008 at 3:48 amdearest sweet elsa,
to think that you were so helpless
while sophia was so near a doctor’s office.
thank god you are feeling sophia’s presence around you now.
i believe you do feel her with you.
i hope you always know that feeling of her presence.
and thank god you are sharing this, communicating with us now…
we are all so worried…
as i follow each and every link
it breaks my heart to see her smile
and to know your heart aches.
how fortunate to have such dear photos
to hold in your hand and heart.
i want to say more but my tears are in the way.
your dear son must be so very confused
and i know that is breaking your heart as well.
what can he understand? i do not know…
my prayers stay with you all
and grow.
i must add
your writing of sophia
and what she would say and do…
that part…
makes me smile inside my tears….
and those mountains
seem to be so close to heaven
which must be why
you feel sophia there.
bb
Amy http://iluvretrothings.blogspot.com
August 18th, 2008 at 5:35 amoh Elsa, I am SO sorry for what you’ve been through with the medical system there. Have they offered any condolences or explanations of what they did? To lose a child is more than a parent can bare - please remember I am praying for you, thinking of you, sending you lots of hugs. Sophia will always be in the mountains looking down on you - in the place she loved the most *hugs*
rochambeau http://rochambeau.typepad.com
August 18th, 2008 at 2:21 pmDearest Friend Elsa,
This is heartbreaking to read. It took courage to write I know. We’ve all been thinking about you and wondering about our sweet Elsa. A day doesn’t pass when I don’t think about you, your family and your dear sweet Sophia, so this post is appreciated. We all want to stand by you!!
Sophia felt it at a young age that there is something special about Austria. I felt it deeply too.
Love you,
Constance
Lajuana Palmer
August 18th, 2008 at 5:41 pmElsa,
It is good to hear your voice…even if it is out of rage and hurt. You and your family have every right to feel this way. I hope with all my heart that you all will heal from this. I miss you.
Peace and many blessings,
Lajuana
traute http://www.spiritssoap.blogspot.com
August 18th, 2008 at 8:22 pmi am so very sad for what you have gone through, my dear elsa. yes, speak if it helps you. my heart is with you.
peace and blessings
traute
jenny http://naturalhistorie.com
August 20th, 2008 at 7:28 amoh elsa… my heart is breaking reading this. i do keep you in my prayers and wish you the warmest in your recovery and memories of your sweet sophia….
Gypsy http://gypsy.chattablogs.com/
August 20th, 2008 at 9:58 pmElsa, Your grief is so close to me and I’ve been so sad for you. As another mother pain like this feels so immense so large and all I can do is offer up prayers. And so I do and I am crying here too. I think of your voice telling me about Sophia and your big heart and it makes me heartbroken for you all. I think of you every day and right now I look at the clock and see that it’s almost midnight where you are. I hope for sleep for you and dreams of your girl. I cannot think of what to say but do want to tell you that I’m one of the many out there mourning with you and hoping and praying…
tinker http://tinkerart.typepad.com/tinker_art/
August 21st, 2008 at 8:34 amOh dear sweet Elsa -
I hope and pray that feeling your beautiful Sophia shining still so near to you, walking there beside you in her beloved mountains, will bring you some peace of mind, heart and soul, bring to you some light to comfort and see you through these darkest hours…I pray her Sunshine will shine her light into your dreams,that you may find rest and comfort once again in your sleep in the nights - so that shining Light might illuminate your path in the days ahead, guiding and comforting you.
I wish I had better words, words to heal - but all I have are these lesser ones - my heart goes out to you, sending love and prayers. You, your husband, your beautiful Moon - all of you are in my thoughts and prayers.
Isabel
August 27th, 2008 at 4:44 amWhat a beautiful tribute to your magical little girl to return to the mountains she loved so much to celebrate her. She was there all the way up those hills:the breeze- her kisses soft upon you, her- the air of the mountain surrounding you with love.
May you continue the celebration of Sophia’s existence with the remembrance of the gifts she brought to your life. Gifts she is still and will always bring to her family.
Focus on her light and how it warms you. I am so sorry for what you had to go through. My prayers are with your family.
stephanie http://rodrigvitzstyle.typepad.com
August 30th, 2008 at 10:45 pmDear Elsa,
I read your story through my tears….I don’t have words to share with you that can be of much help. I am happy that you are in her special place, that you can feel her presence.
I hope you know there is a tidal wave of love out here for you and your family.
love,
steph
Gisele Schoene http://giseleschoene.blogspot.com
August 31st, 2008 at 2:33 amDear Elsa,
It is very nice to know you feel Sophia is with you. She will always be. Nobody can take the memories from you. It is really revolting to know reputable hospitals in developed countries are playing with lives. Be strong and take care of yourself, your son needs you. I am thinking of you and your family.
Love, Gisele
Michelle
August 31st, 2008 at 1:27 pmThinking of you all today…