Author: mamasorganizedchaos
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Osteogenesis Imperfecta – The Story of Allegra Joy
The Story of Allegra Joy Imagine coming to the realisation that death is the best thing you can do for your child. That the cold empty eternity of death is the kindest decision that you, as a mother, can make for your child. That the alternative, giving your child life, is worse. That your child’s…
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HLHS- The Story of Layla Hailey Klar
On the morning of November 20, 2018, I drove to the hospital to deliver my baby; a baby I knew I couldn’t bring home. To the shock of both me and my husband, I got pregnant on our very first try. He had wanted to wait a little longer to start trying, but I said…
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Major Cardiac Abnormalities
I have found this website, and the Facebook support group, to be invaluable. I had never felt so terrified, alone, and distraught, when I realised that my husband and I would have to terminate our little baby boy for medical reasons. I hope my story may help someone, as the stories on this website,…
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Anencephaly – The Story of Valentina
On July 9th, I had an appointment for an ultrasound at a high risk doctor in Savannah, GA. It was a rough morning to start with and I was definitely on edge already before I even got there. My doctor had told me about two weeks before that he saw something, but not to be…
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Quarantine, PTSD, a Paintbrush and Me: How A Gentle Creativity Practice Helps this Mom Through the Isolation of Covid
Quarantine brought silence and stillness to our usually hoppin’ party town. Suddenly in late March there was no cumbia music, no hippie drum circle, no karaoke quinciñera party pumping out the jams. Our pueblo shut its doors and we retreated into our homes. It was the exact silence that I had begged and pleaded for…
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A Heart Failure Momma
My name is Christine- 39 yrs old and a Heart Failure Momma. I was diagnosed with Congestive Heart Failure last Sept 2019. We didn’t know where it came from, it’s just my heart started to get weak at 10% ejection fraction. It was normally treated and after 4 months my heart improved to 35%. I…
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Duplication of Chromosome 2 – The Story of James
We have one living daughter and very much wanted to grow our family. When she had just turned a year old we somewhat surprisingly found out that we were pregnant again. Once we got over the initial shock, we were quickly excited to welcome the baby and found out at 20 weeks that it was…
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2020 Angel Fundraiser
It is fundraising time again! Every year in honor of April Rey’s birthday, we hold a fundraiser. It is such a bittersweet time, but this fundraiser has been a phenomenal way to honor April’s legacy and all of the other babies we’ve lost too soon. August 8, 2020 will be what would have been April’s…
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Hypoplastic Left Heart Syndrome- The Story of Owen
In February of 2017, we were ever so thrilled to discover we had fallen pregnant after about 6 months of trying. ❤ We already had a beautiful 11 month old daughter and, although they were going to be close together, we were ready to complete our family (and hoping for a boy)- but of course…
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The Story of Hope – T21
Her name was Hope. I wish people would ask me about her. I wish people would talk about her. I miss her every single day. We found out our sweet baby girl had T21 when I was 11.5 weeks along. When the doctors call came I just knew something was wrong. In fact, I kind…