Did you know that February 29 is Rare Disease Day? It’s also Jay Faulkner’s birthday. Jay is a family man, editor, and friend who allowed me to do a guest post on his blog to raise rare disease awareness. I’ll actually have a few posts there through the month, since my family and I seem to constantly [...]
Posts Tagged ‘alobar holoprosencephaly’
Let It Fall: A Guest Post About Coping With A Diagnosis
Posted in Writing, tagged alobar holoprosencephaly, don't tase me bro, February 29, Jay Faulker, Leap Year, Mercedes M. Yardley, Rare Disease Day, Williams Syndrome on February 5, 2012 | 4 Comments »
A Newborn Field Mouse
Posted in Writing, tagged alobar holoprosencephaly, be patient, conflict, field mice, grief, joy, Mercedes M. Yardley on October 13, 2011 | 10 Comments »
I have to be honest; It’s still difficult to be here. I want to get back onto the writing/blogging horse. After the birth of one daughter and the death of two more, I feel like I’m a newborn field mouse, stumbling around in the meadow. Some days I’m absolutely full of laughter. Some days I [...]
Twins: A Tale of Sorrow and Joy in Pictures
Posted in Writing, tagged alobar holoprosencephaly, dealing with loss, happiness and joy, losing a child, Mercedes M. Yardley, NICU, preemies, sorrow, sunshine, twins on July 1, 2011 | 22 Comments »
The Time Has Come, The Walrus Said…
Posted in Writing, tagged alobar holoprosencephaly, bedrest, blogging less, Facebook, I hate the ER more than life, Lewis Carroll, Mercedes M. Yardley, Twitter on May 12, 2011 | 17 Comments »
So it’s official. I’m on bedrest. My doctor called me out in a spectacular way, saying that if I didn’t slow down I’d spend the rest of my pregnancy in the ER. Ever the “Don’t tell me what to do” type, I eyed him. “Slow down how much?” I asked. “Full stop.” “Impossible. How [...]
Writing The Hard Stuff
Posted in Writing, tagged alobar holoprosencephaly, Ann Rule, be courageous, dealing with difficult things, loss, multiples, personal essays, Ted Bundy, The Stranger Beside Me, Williams Syndrome, Writing on March 31, 2011 | 6 Comments »
I just finished watching “The Stranger Beside Me”, a movie made from Ann Rule’s book of the same name. I read the book years ago and loved it. If this title is new to you, then run yourself right down to the bookstore and pick it up. It tells about Ann’s struggle to become a [...]
Finally, Good Baby News! Let’s Party!
Posted in Writing, tagged alobar holoprosencephaly, loss, multiples, optimism, prepare for the worst and hope for the best on March 18, 2011 | 18 Comments »
Every time I go to the doctor, the news has been bad. One of the triplets died. One will most certainly die. When the second one passes, it could very well take the third with it. Well, enough of that! Today we received wonderful news. Although sicky baby will almost certainly pass away soon after [...]
Incompatible With Life
Posted in Writing, tagged alobar holoprosencephaly, dealing with loss, every cloud has a silver lining, loss of a child, multiples, optimism on February 28, 2011 | 15 Comments »
We learned that while one baby continues to develop normally, the other one has been diagnosed with alobar holoprosencephaly. This is what ultimately led to the demise of the first triplet. We just learned that it will most certainly lead to the demise of the second. My sweet girl (they’re all girls! Yay!) has severe [...]
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