Sadly, it's out there. People do things that harm others. It's not cool and it's downright scary. That's why I have contemplated, "what is the best thing to do." Do I privatize my blog and only have people I know, that I can send and email telling them that they can follow our story and continue to be prayer warriors and supporters of our little tough guy? (Yes! and a thank you is not enough to express my gratitude for my faithful followers). But what about the aunt that emailed me because her sister was having a baby with OEIS and wanted advice? What about the mother with an older child that had never met another family with OEIS? (Who by the way had the same surgeon operating on our child!) And, what about the mother that has found out her child has these random set of birth defects. The mother that has little hope, because she has been told her child could be in the hospital for months or a year. Her child may never walk, be able to eat by mouth or urinate in a normal way? What about that mother, who has been told she should abort her beloved child she has been carrying for 5 months. She is lost and sad and confused. She loves her child, but she has no face to give her hope. She can only imagine sadness in her child. How could she give life to a child that only faces adversity?
Let me tell you why.....because there is something much bigger in life than "being normal". Isaac's story is about hope, but it is mostly about love.
Does this look like the face of a child without hope or joy in his life? (Hardly, right?) And let me tell you..... the doctors were right about some things and wrong about others; but the thing they couldn't tell me was this..... that he is happy. That he has a cackle laugh that is contagious. That he can charm you with his quick wit, yes, even at 2. That he is bold and knows exactly what he wants. That he is ornery as heck and enjoys it. That he will tell you everyday you pick him up from school, "mommy, I missed you." The doctors just can't predict how much love you will have for your child, no matter how long your hospital stay is. No matter how many birth defects your child has and no matter how rare and unknown his health will be.
I remember being that mother. Pregnant with her beloved child, without hope. I was the mother scouring the internet at 2:00 am with my pregnant belly, moving through the motions and searching for an answer. And you know what? I found the answer, Isaac's diagnosis, even before the doctors could figure it out. I found some blogs about children with OEIS. And I saw their precious faces, their smiles of joy, and their families, that you could tell only had love for their child. And it gave me exactly what I needed..... hope. Hope that while I know it may not be an easy road, that our lives were not destined for isolation and grief.
There was a beautiful child waiting for us to welcome him and give him the extra love and care that he needed. The internet can be a very scary place. I don't even like to imagine the harm it can bring. But it can also be a place of finding hope. It can be a place to share stories and messages, so that we can make better decisions. And so, with thought, prayer and perspective, I am keeping Isaac's blog public. Because if I hide his inspiration to the world, then I am not allowing his disability to help others in need. If I know this is how I can help share his story to help others, then I know his suffering will always give God glory.
So, with all that being said, please respect our blog, my children and all the families out there that put their lives out there for all to see. It's not easy to share your life with the world, but sometimes, we know that sharing can help others. Don't take that away. Please respect all and take nothing from others stories, except hope, prayer and respect.
