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ituation is what it is there is nothing i can do to change it and at some point i had to realize that and let go of the expectations i had for my life i can t speak for all of you but i know for a lot of us we have these expectations on what life is supposed to be like and then when it doesn t turn out that way there is a grieving process i go through the grieving process every time i see evan lose strength what helps me during these times to change my perspective is to think of things i am thankful for in regards to the situation gratefulness doesn t mean i have to love evan s disease in fact i hate that my child has a disease that will make him get weaker but i am thankful that we have had the time with him that we have had i don t like having nurses in my home all the time but i am so glad we have the care that we do and that i don t have to do it on my own i hate that my son has to be on a ventilator 24 7 but i am so thankful for the technology so he can live and not only that but he can live at home no matter what we are going through there are always things we can be grateful for it makes me so sad that evan s hands aren t able to grip anything anymore but i am thankful for my other son 5 year old andy who willingly acts as hands and feet for evan by focusing on the things i am grateful for i can change my perspective and get out from under the cloud that i could live under otherwise i would be totally consumed with fear and anxiety over the future my life is not what i had dreamt but evan has been exactly what i needed i am thankful for the gift god has given me in evan and pray that i will be the mom i need to be to him despite the circumstances evan has been doing very well he attends a typical 2nd grade class and absolutely loves it his classmates and teachers are so kind to him and help him all that they can for these things i am grateful he is realizing he is different but has kept his smile and good attitude and for that i am grateful in fact one night while he was sick with a respiratory virus he said mom i have a lot to be thankful for i am especially thankful for god s love and for all the things i have to help me referring to his medical equipment when we sit at the table on thanksgiving i am going to have a lot to say about what i m thankful for i had to turn away because i had tears in my eyes what a lesson in thankfulness god is so good and i am thankful god continues to give me strength to deal with the unexpected and for that i am thankful 7 comments filed under uncategorized december 19 2010 6 30 am valentia s story this is part of the story of valentia silas sister valentia passed away at six weeks old of smard this telling is heart wrenching and raw and real and i believe necessary in valentia s passing she enabled silas to be here with us she should be celebrated valentia priscilla azelle werner september 23 2008 october 23 2008 the following is an excerpt from a biography i began writing about the events surrounding valentia s death my husband john and i were told she died from sids but i never believed sids took her life because unlike all the other babies who lost their lives to sids in our county over a five 5 year period valentia had no risk factors it was clear to me that she did not die from sids it was frustrating and i was outraged that nobody in the medical community would listen to me and merely wrote me off as a grieving mother in denial as such i started my own investigation to try to uncover what may have taken her life unfortunately we would not discover that she had smard until after silas was born but if i hadn t done my own investigation into her death silas would not be alive today only four pounds when she was born it was important that valentia begin gaining weight the doctors and nurses told me that it was more imperative to feed her every three hours with a bottle than to spend too much time trying to get her to latch on in order to breast feed her i was upset for not being able to successfully breast feed valentia but john and i still felt blessed that she loved to eat and was growing we along with our parents adoringly referred to her as our little chow hound in fact she was growing so well that the pediatrician said that she didn t need to see valentia until her two month checkup everyone who knew valentia witnessed nothing but a healthy growing gorgeous baby when she was born valentia looked very much like me with her round face and brown eyes her brown eyes changed steadily and soon she had john s big alluring azure eyes along with his perfectly shaped sweetheart mouth his pale skin and aunt laura s john s sister long slim frame she still had a round face and the porter nose as my dad proudly described it the hair on top of valentia s head was still growing and looked like very fine peach fuzz close up but from far away it looked as if she had a receding hairline it was adorable still sitting on the bedroom floor i felt the tears begin to swell in my eyes i took a deep breath closed my eyes and quickly wiped away the tears before they hit my cheeks it was so painful to see the massage chair where i spent so much time feeding and loving and caressing my dear little valentia i felt as if i was going to vomit so i directed my eyes toward the window and concentrated on the melancholy white sky streaming through the panes of glass and the sturdy old oak tree in the distance the first thing i would cast my eyes upon as i awakened on all those pregnant mornings i would gaze out the window look at that tree with its spring buds and think how valentia will be here with me the next time that those buds begin to blossom it was here in this room where valentia was conceived and where valentia died that s when i realize that i m sitting next to my side of the bed the exact spot where my baby daughter s short precious life suddenly ended positioning myself on the spot where valentia died i pulled my knees in tightly to my chest trying to roll myself into a small ball in an attempt to simulate what it might have been like for valentia when she lay there i thought about her taking her last breath that night trying to imagine what she saw right before she closed her eyes for the final time i wondered if i was too far away for her little eyes to see me in the darkened room then my thoughts faded back to the eve of our nightmare valentia was crying when i lay her down in her crisp white ruffled bassinet almost as if she was trying to tell me something i lifted her out and handed her to john while i made a fresh bottle but john soon discovered that valentia was stinky so i immediately undressed her so that i could give her a bath that s why you re crying i said you re a stinky little girl mama is going to give you a bath before i began bathing her she was making soft sounding snort noises through her nose but it didn t seriously concern me weeks earlier the pediatrician as well as all my friends with babies assured me that these noises were perfectly normal but the noises stopped when valentia was in the bath we had recently turned on the furnace to cope with the cold bitter pittsburgh weather so i thought that the cause of valentia s muted snorts was all the extremely dry air from our forced air gas furnace i remember yelling to john in the next room she s not making those noises anymore i think it s because of the steam from the water i think it s too dry in that room because of the furnace even our little yorkshire terrier gigi was making hacking noises earlier today it must be too dry in there and i think that s why she was crying i washed valentia s soft peach fuzz hairline and she smiled as i rinsed the suds from her head her eyes looked particularly bright and blue that night which is how i ll always remember them when her hair was wet her sweet little head always seemed larger than her tiny 5 pound 5 ounce body valentia i said teasingly you are the cutest little alien baby mama loves you you are beautiful you look more like your dada every day you have his big beautiful blue eyes i love you so much i had valentia s bathing method well under control at this point unlike the first week she was home and it had quickly become my favorite activity i wanted to savor the moment because i was afraid she would grow up too fast she loved to feel the warm water splash on her body when i sprayed her with the hand held hose from the jacuzzi tub she absolutely loved bath time the room seemed chilly i think the temperature read 67 degrees valentia had only a few smaller undershirts upstairs and i couldn t find a clean one so i dressed her in one of the cotton undershirt style onsie john was peering over my shoulder to make sure he could undress valentia for the next diaper change he was just starting to learn the mechanics of crossover snappy undershirts don t worry about snapping the bottom i explained i m just going to use this as an undershirt i lay valentia down in her pink fleece jumper the one with the ballet skipper feet that my mom had bought her and noticed that her feet were cold so i slipped some warm cotton socks on her feet before i snapped the jump suit i grabbed the swaddle blanket from her dresser drawer and gently swaddled her arms to her side swaddling is supposed to comfort babies because it reminds them of their tight quarters in the uterus john used to call it a straight jacket he had a point trying to help her breathe better i detached her sweet peace an automated rocker that simulate rocking arms from its base and set it down next to my side of the bed for her to sleep in this way she could still sleep on her back reclined but not totally flat my friends with a babies told me that one trick to get a baby to sleep was to put them in their carrier the sweet peace was shaped like a carrier but more relined should i actually get her carrier or do you think this is safe for night sleeping i asked john when i bought it he reminded me the guy at babyland said that his daughter used the sweet peace as a bassinet oh yeah i replied he told me the same thing so i set valentia down gently in the sweet peace making sure that her little head was in the head positioner so she didn t slouch over while john plugged in the vaporizer to add moisture to the air but valentia continued to cry so i gave her a pacifier she didn t seem to want it though this was unusual because she loved that pacifier so much that john joked that she looked like the baby from the simpson s who always had a pacifier stuck in her mouth nonetheless i figured she d start sucking away as soon as she clamed down i tucked the bottom part of the pacifier in her little fleece swaddle so that it wouldn t fall out a trick i used to hold it in place when i drove with valentia over to my mom s house 45 minutes away i also wanted to ensure it wouldn t fall out because i had read that pacifiers reduced the risk of sids sudden infant death syndrome by 70 something to do with the sucking motion and brain stimulation just that week i also learned that ceiling fans were significant sids risk reducers because they decrease the chance that babies will re breathe their own carbon dioxide i didn t know much about sids at that point i thought it was caused by suffocation and that for some reason boys african american babies and babies with teenage mothers were more at risk so even though i had little fear that valentia was at risk i turned on the ceiling fan too just to be extra careful especially after two different friends who had stopped by that week happened to bring up the subject of sids and ceiling fans during the course of their visit valentia was still crying awe valentia don t cry mama is here mama is right here i can see you and i m right here those were the last words i spoke to her before she drifted off to sleep my voice was the last thing she heard before she took her last breath i sometimes hear myself repeating those words out loud mama can see you mama is right here then instantly i feel a hot wave of anxiety course through my body recriminating thoughts begin to flood through my mind mama didn t see that you stopped breathing mama was right here next to you but didn t know what you needed mama failed you mama fed you in this room mama loved you in this room but mama let you die in this room i had just given birth six weeks ago and now my baby was dead buried in the ground i didn t want to think or talk about anything else nothing else was worthy of my thoughts and my thoughts were all i had i wanted to savor every last one i wanted to climb up on top of every rooftop and scream into a bullhorn my baby was alive she was a person she lived she had a birth certificate she had a social security card she had an insurance card she mattered she was here she smiled she cried she liked listening to her dada read her green eggs and ham she hated getting undressed but loved getting a bath she was her own little person with her own personality but now she s dead my baby is dead i wanted to scream to every stranger i passed on the street valentia died and nobody knows why i wanted someone from television to do a story about her on unsolved mysteries i wanted the entire world to know about valentia refocusing my thoughts on seeing valentia again i figured that the closest i could ever get to being with her is through her brother or sister so i imagined what it would be like if someday we have another child will he or she look like her and if we have another baby will we be able to live in this house the house where valentia died i think about the hundreds of joyful mornings that took place in this house before the single horrifying day that valentia died and wonder if i can stay here in this handsome old house our beloved home 14 comments filed under uncategorized december 15 2010 8 16 pm profiling smard maddison s story maddison was born 6 8 08 a healthy 7lb130z she was born with club foot but we was told its postional so a few times a phsiyo she should be fine after a few visits to the phsiyo we noticed the movement in her feet had stopped she was referred to a pediatritian they weren t worried just said they would see her in 6 months when maddison was 6 months old she fell ill and was takern to hospital where they said she had pnemoinia she had a week of antibiotics and and was sent home after 2 weeks in hospital while at home her feeding was poor and she seemed to struggle breathing also she would not bare any weight on her legs 3 weeks after the time she was sent home from hospital we were back again this was the 16th feb 2009 a and e the docs noticed her breathing pattern was not quite right and admitted her to the wards a day later maddison got alot worse and was taken up to intensive care unit there they did a xray and noticed the her right side of her diphragm was high and her lung had collasped with the other sypmtoms that i had told the e g no movement of feet no weight bareing tiny cry and now poor feeding the...
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