I created this video yesterday in recognition of Purple Day, a grassroots effort to increase epilepsy awareness worldwide.
Those who have experience with a seizure disorder like Danielle's know that this is a tiny part of our story. Trialing drugs is like a guessing game. Research is so badly needed. There are children struggling with a catastrophic seizure disorder that threatens to rob them of everything. New research could release them of the clutches of a beast. We dont know yet how Danielle's story ends, but I pray for her everday, as well as everyone else that has struggled with epilepsy.
It it's been laid on your heart to get involved, here are some ways that you can help.
http://www.cureepilepsy.org/getinvolved/
Please watch.
Wednesday, March 27, 2013
Friday, February 1, 2013
Life. A gift.
IDSC for life quoted me today, in a compilation of accounts from families about how they received their child's Down syndrome diagnosis.
I've been wanting for a long time to write more about our experience with a post-natal diagnosis. I believe these few moments after our youngest daughter was born were incredibly pivotal in my life, and the doctor who delivered her made an amazing impact on me.
I'll never forget what she said in those moments after Danielle was born, I replay her words in my head and they become more true as we learn and grow together; but it wasn't her words that made the biggest impact on me. It was her congratulations. It was her joy. She was truly and genuinely happy for us. I felt comfort in that she had no sorrow or pity for us.
It wasn't until months later that I learned more about her. Her name is Doctor Marie Anderson. Doctor Anderson founded the Kristen Anderson Perinatal Hospice, named after her daughter who left this world too soon, as sometimes our children do. The Kristen Anderson perinatal hospice assists families who have received a terminal prenatal diagnosis. They support families as they deliver their children in to this world, as according to the will of God. She explains in her own words how the Kristen Anderson Foundation helps parents cope with the immanent loss of their child:
Life. A gift. Down syndrome is compatible with life... with good life... full life. I understand now why Doctor Anderson was not mournful for us when we received a Down syndrome diagnosis. She knows mourning. She knows suffering. She knows tragedy. She knows Down syndrome is not a diagnosis that warrants these things. We were blessed with the life of a child. We are blessed to grow with this child, to hold her and love her and enjoy her. We are blessed to see her first smiles and listen to the giggles she shares with her siblings. We are blessed to have the honor of raising her, even as we are sometimes faced with adversity. We are blessed with the overwhelming pride in her accomplishments. We are blessed with the joy of watching her blossom in to the person she is meant to be. We are blessed with a future that we can look forward to with our daughter. She has been given to us to guide her as she lives her life by the Lord. She is a gift that we will cherish for as long as we are blessed to have her.
"The pediatrician said almost nothing. My OB was an absolute blessing. She said Danielle would get through the gates of heaven. She said she'd get me there too. She said Danielle would be strong for me and she'd make me stronger too. She cried tears of joy for us. She said we had been very blessed. I could see that she was genuinely happy for us. None of it really made sense to me at the time, but now just over a year later I totally "get it." I'm so thankful for her. I think she helped to shape my view and started me off on the road to acceptance."
I've been wanting for a long time to write more about our experience with a post-natal diagnosis. I believe these few moments after our youngest daughter was born were incredibly pivotal in my life, and the doctor who delivered her made an amazing impact on me.
I'll never forget what she said in those moments after Danielle was born, I replay her words in my head and they become more true as we learn and grow together; but it wasn't her words that made the biggest impact on me. It was her congratulations. It was her joy. She was truly and genuinely happy for us. I felt comfort in that she had no sorrow or pity for us.
It wasn't until months later that I learned more about her. Her name is Doctor Marie Anderson. Doctor Anderson founded the Kristen Anderson Perinatal Hospice, named after her daughter who left this world too soon, as sometimes our children do. The Kristen Anderson perinatal hospice assists families who have received a terminal prenatal diagnosis. They support families as they deliver their children in to this world, as according to the will of God. She explains in her own words how the Kristen Anderson Foundation helps parents cope with the immanent loss of their child:
"Mothers want to be with their babies...especially when they are sick. It's the natural thing to do. Whether a person lives 25 minutes, 25 years or longer, none of us knows prospectively the contribution any given person will make to humanity. So we treat each baby and Mom with the dignity they deserve, and we pray... a lot. In this process, the parents bond with their child. They share fully in their child's short life and experience their death. They realize what a joy it is for a person to spend his or her entire life within another, surrounded by love, never having committed a sin, never wanting for anything. The experience provides a firm foundation for closure with the death of their child. It brings at least some level of a positive experience from a tragic situation. It facilitates the grieving process, and makes it more likely to be fruitful...so the family can find peace. Each time I accompany someone on this journey, I am reminded just how precious life is. It is truly a gift." -Dr. Marie Anderson, Tepeyac Family Center.
Life. A gift. Down syndrome is compatible with life... with good life... full life. I understand now why Doctor Anderson was not mournful for us when we received a Down syndrome diagnosis. She knows mourning. She knows suffering. She knows tragedy. She knows Down syndrome is not a diagnosis that warrants these things. We were blessed with the life of a child. We are blessed to grow with this child, to hold her and love her and enjoy her. We are blessed to see her first smiles and listen to the giggles she shares with her siblings. We are blessed to have the honor of raising her, even as we are sometimes faced with adversity. We are blessed with the overwhelming pride in her accomplishments. We are blessed with the joy of watching her blossom in to the person she is meant to be. We are blessed with a future that we can look forward to with our daughter. She has been given to us to guide her as she lives her life by the Lord. She is a gift that we will cherish for as long as we are blessed to have her.
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