March 25, 2015 we were told that our sweet newborn baby who was only 5 days old had a terminal diagnosis. The world stopped, the tears were uncountable, you could hear our hearts breaking. How long did we have with her, how would we tell her sister, what will our lives be like, will she ever leave the hospital, how can we do this, and will we make the right decisions. These are all the things plus a million more that went through our minds as the Drs. enter the room with so much unknown information. Emma is pretty rare (1 in 100,000) there are not many Drs. that know about her diagnosis. Reading the info given to us from 1995 (she was born in 2015) was so limited and heartbreaking at the same time. What was Emma's life going to be like, will she even have one. We were told to take her home and love her because she might not be with us very long.
When I look back on diagnosis day I think about how uneducated every one in that room was. We all thought (including Drs) that Emma would just be a vegetable from the information that was given to us. What we didn't think about was all the unknowns, no one knows everything and definitely no one can write someone else's story. Only Emma can write her own story.
I know that nothing can take away the pain from your child receiving a terminal diagnosis like lissencephaly. But these quotes help me everyday to refocus when I am down. I wanted to share them in hopes I can help someone else who is struggling with the heartbreak of your child receiving a devastating diagnosis. Please help us to reach others by sharing this blog post, sharing Emma's facebook page and/or instagram page.
Welcome To Holland
By: Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you never would have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice Holland has windmills…and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very, very significant loss.
But…if you spend your life mourning the fact that you didn’t get to go to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.
The Brave Little Soul
"Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean?" She asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and they become motivated by love alone."
The little soul began to understand and listened attentively as God continued. "The suffering soul unlocks the love in people's hearts much like the sun and rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this- it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer- to unlock this love- to create this miracle for the good of all humanity."
Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's harts! I want to create that miracle!"
God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you."
God and the brave soul shared a smile, and then embraced. In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed."
Thus at that moment the brave soul was born into the world, and through his suffering and God's strength, she unlocked the goodness and love in people's hearts. For so many people dropped their differences and come together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, and some regained lost faith- many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place.
The miracle had happened.
God was pleased."
–by John Alessi
EMBRACE LIFE
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