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Text of the page (random words):
that or that helps me understand why my sister is acting a bit off even a year after losing her baby or these obituaries are really helpful i have no idea how to write a baby obituary maybe you can t put your photos in albums or your baby s ashes in the urn or maybe you are just the opposite and look at the photos every day and light a candle by the urn every morning our realities are the same just dealt with in a different way there is no right or wrong all i know is that i would gladly share an ice cream with you listen to your story and love having the opportunity to share mine share this share on facebook opens in new window facebook email a link to a friend opens in new window email print opens in new window print share on pinterest opens in new window pinterest share on x opens in new window x more share on linkedin opens in new window linkedin share on reddit opens in new window reddit share on tumblr opens in new window tumblr like loading 6 2 2011 day two dekar s smile days of dekar june 3 2011 in carrying to term grief hypoplastic left heart syndrome infant death making every moment count photos thankful trisomy 18 t18 5 comments i was so tired after hearing dekar s diagnosis of trisomy 18 and hypoplastic left heart syndrome my life became filled with so much uncertainty and the grieving began there were no promises i would ever see him with his eyes open so after the c section and meeting my little guy i didn t want to sleep at all i wanted to take in every single moment after only a couple of hours i was exhausted but happy i am soaking in every moment that dekar is alive i watched the kids hold him and kiss him and relished every moment this picture reminds me of how hard it was to keep my eyes open and the feeling of pure exhaustion and i know my husband felt the same here is my husband resting while awake isaiah kept him on his toes very soon after those pictures were taken the ones showing how tired we were another picture was taken i was holding dekar and this happened dekar smiled i remember that moment he looked me straight in the eyes and smiled and it was such a real smile it literally took my by surprise and pierced my soul with joy it wasn t long after the smile that it became obvious he was leaving us his eyes started glossing over and his heart rate continuously decreased we all held him one more time and said good bye later on i realized even more what a gift his smile was and how much he said to me in that fleeting moment i love you mom and i m so glad i got to see your face and feel your kisses i love daddy and all my brothers and sisters too it was so fun being held and loved by everybody but i m tired and i can t do this much longer i have to go soon i know you will be sad but i ll see you again mom thank you for giving me life it has been a good one i know i am loved and always will be so are you he said it all in that one smile and what a blessing it was that hali was right there and captured the moment share this share on facebook opens in new window facebook email a link to a friend opens in new window email print opens in new window print share on pinterest opens in new window pinterest share on x opens in new window x more share on linkedin opens in new window linkedin share on reddit opens in new window reddit share on tumblr opens in new window tumblr like loading 6 1 2011 day one dekar s roses days of dekar june 1 2011 in grief infant death making every moment count memorial item photos trisomy 18 t18 2 comments after getting dekar s diagnosis my husband s co worker friend gave a pot of beautiful roses to us i started calling them dekar s roses at one time last summer there were nine beautiful blooms on one of the plants one for each of my children since i do not have a green thumb i transplanted the roses in three different areas hoping at least one plant would survive this year only one plant is doing well i really do not have a green thumb these pictures were taken last year dekar s roses share this share on facebook opens in new window facebook email a link to a friend opens in new window email print opens in new window print share on pinterest opens in new window pinterest share on x opens in new window x more share on linkedin opens in new window linkedin share on reddit opens in new window reddit share on tumblr opens in new window tumblr like loading days of dekar june 1 2011 in grief infant death making every moment count memorial item nilmdts photos trisomy 18 t18 2 comments the month of dekar s birthday has been funky for me the last two years if you have lost somebody special in your life you may understand for me this means i may be more somber and melancholy other times i ll want to keep busy and do something productive to pass the time some days i ll notice i m simply out of sorts in a funk as time has gone on i ve recognized this as my way of working through the grief and acceptance of losing dekar these things don t catch me off guard or make me question myself as they used to i just take them as they come grief is a weird thing and definitely different for everybody since this is dekar s birthday month i am going to post a new picture or memory of dekar when i feel the need to help me work through the funk day one dekar s roses day two dekar s smile share this share on facebook opens in new window facebook email a link to a friend opens in new window email print opens in new window print share on pinterest opens in new window pinterest share on x opens in new window x more share on linkedin opens in new window linkedin share on reddit opens in new window reddit share on tumblr opens in new window tumblr like loading unexpected sadness april 1 2011 in grief infant death 2 comments all of a sudden in the midst of a busy morning i got very sad our family will be leaving on a vacation and i feel like we are leaving dekar behind i didn t see this coming i am not sure what to do with the feelings besides cry a little bit share this share on facebook opens in new window facebook email a link to a friend opens in new window email print opens in new window print share on pinterest opens in new window pinterest share on x opens in new window x more share on linkedin opens in new window linkedin share on reddit opens in new window reddit share on tumblr opens in new window tumblr like loading dekar s valentine 2011 february 14 2011 in infant death making every moment count memorial item trisomy 18 t18 1 comment a beautiful and unique valentine created by landon s gift on facebook share this share on facebook opens in new window facebook email a link to a friend opens in new window email print opens in new window print share on pinterest opens in new window pinterest share on x opens in new window x more share on linkedin opens in new window linkedin share on reddit opens in new window reddit share on tumblr opens in new window tumblr like loading recognizing the loss of dekar with a beautifully written sympathy card january 15 2011 in carrying to term grief hypoplastic left heart syndrome infant death sympathy card for infant trisomy 18 t18 2 comments it s hard to know what to say to somebody when their precious baby dies while we received many lovely heartfelt sympathy cards this one has always stood out to me the lady hesitated to give it to me because she was worried it was too late it is never too late to recognize somebody s loss whether it be in word or deed i was so blessed when i read this even though it was given to us a couple months after dekar s departure 9 09 08 dear friends though it has been a while now there is still nothing i can say to ease your loss of little brother and son dekar our prayer is that time will make the wound less raw and the pain less intense the time you spent with dekar was beautifully spent in such a meaningful way that it touched our hearts the sharing of your story and of that time gave even more meaning to dekar s life as others use it to reinforce their strength to face similar conditions our prayer too is that dekar s absence will not be sorely felt and that one bright star will shine over each of you to remind you that one day the wound will be made whole again when your continued faith in god our loving father will bring us all together again with our missing loved ones then without pain or sorrow we can love and be with one another for eternity with friendship and love for your family jsw share this share on facebook opens in new window facebook email a link to a friend opens in new window email print opens in new window print share on pinterest opens in new window pinterest share on x opens in new window x more share on linkedin opens in new window linkedin share on reddit opens in new window reddit share on tumblr opens in new window tumblr like loading final diagnosis trisomy 18 sent 4 28 08 december 10 2010 in carrying to term grief hypoplastic left heart syndrome infant death making every moment count trisomy 18 t18 leave a comment i emailed this when we had our final diagnosis about dekar there was much uncertainty for about a month not knowing what was going on with our baby when all had seemed to be going fine i can vividly remember the raw emotions that flowed when the doctor called with the final diagnosis our baby boy has been diagnosed with a chromosomal abnormality called trisomy 18 it is caused by the presence of three instead of two copies of chromosome 18 in a fetus or infant s cells what this means is that the prognosis for the baby s survival is not good along with and or because of trisomy 18 he has a heart that is not formed correctly most likely only two chambers possibly three along with a brain and kidneys that have not formed correctly the dr says there is a small possibility the baby could be born live but if he does he would not likely live long there is also a very good chance that he will die before birth thankfully he is not in any pain now we have named him dekar pronounced decker a name we picked out a while back it means pierce he certainly has pierced our lives with unexpected pain but mostly with an overflow of love for him his tentative middle name is ezri which means helped of god and god is truly his only hope now please pray for peace for all of us there is still much uncertainty in the coming days and it is all in god s hands marge and the rest of the schmidts side note we have never found out the gender of any of our other babies before birth dekar was the only one we requested to know the gender since we felt it was important to have a definite name for him beforehand we did use the name ezri it was very fitting and still is we know god was with us through the whole thing and even prepared the way before we even knew anything was wrong god gave the ob gyn eyes to see and the wisdom to check into something that seemed like a small thing the baby seemed to be growing slower than my other babies that actually is a whole nother story in itself after hearing the news of the final diagnosis we met with doctors several more times to find out exactly what was going on with dekar and started formulating a birth death plan otherwise known as praying for a miracle planning for a funeral share this share on facebook opens in new window facebook email a link to a friend opens in new window email print opens in new window print share on pinterest opens in new window pinterest share on x opens in new window x more share on linkedin opens in new window linkedin share on reddit opens in new window reddit share on tumblr opens in new window tumblr like loading thankfulness 11 24 2010 november 24 2010 in carrying to term grief hypoplastic left heart syndrome infant death making every moment count thankful trisomy 18 t18 1 comment i didn t get out of my pajamas for several days after getting dekar s diagnosis i am thankful that god doesn t care how i look or smell when i cry out to him i am thankful that god understands the depth of the heart cry oh god help me that was all i could pray for a while i am thankful that god planned everything so perfectly the day that dekar was born when i find myself worrying about something i can rest in the fact that god is in control and that god cares i have the very real experience of dekar s eight hours on earth god took care of details that i did not think of and certainly couldn t have planned if god did that for me then he does it for me now it helps calm me in times of stress i am thankful that i spoke to dekar when i looked in his face and saw his poor color i was silent he had the face of death all i could think was this isn t right this isn t how it is supposed to be dekar is supposed to be alive to meet his brothers and sisters and while i was fretting i remembering hearing a gentle voice say speak to him dekar knows your voice and so i did i said hey dekar i didn t know what to say but as i kept talking he moved his head and attempted to open his eyes looking for the voice that he heard for months while growing inside of me then he attempted to cry the nurse told me afterwards that was a miracle usually babies in dekar s situation continue to deteriorate more and need medical intervention to respond but my voice and my husband s voice was what dekar needed i am thankful i didnt give into my grief listened to the beckoning and spoke to him this morning i ran across a highlighted verse in my bible i had dekar s name scribbled beside it isaiah 57 1 2 the righteous perish and no one ponders it in his heart devout men are taken away and no one understands that the righteous are taken away to be spared from evil those who walk uprightly enter into peace they find rest as they lie in death i am thankful that although i don t remember highlighting that verse that god used it as a reminder for me today that he cares about dekar and that he has been spared from evil and finds rest as he lies in death i am thankful that although dekar is not here with me he is in total peace and at rest in heaven i am thankful for the experience i am thankful there were people to support me and help guide me with decision making i am thankful that i can now extend that same kindness to others i am thankful i have a new perspective and a new hope happy thanksgiving dekar tomorrow i ll have some ice cream remember the beauty of your short life and be thankful for god s continued faithfulness share this share on facebook opens in new window facebook email a link to a friend opens in new window email print opens in new window print share on pinterest opens in new window pinterest share on x opens in new window x more share on linkedin opens in new window linkedin share on reddit opens in new window reddit share on tumblr opens in new window tumblr like loading dekar s urn june 29 2010 in carrying to term grief hypoplastic left heart syndrome infant death making every moment count memorial item trisomy 18 t18 tags coping infant death infant urn memorial trisomy 18 4 comments it took alm...