Preserving Memories of Unconditional Love

What do you see when you look at this face?

I see love. I see a huge smile. I see a boy who won’t let me take video of him because he is too busy posing for a still picture. I see unconditional love.

This boy has been through hell and back. This boy is only 2 1/2 years old. This boy is my miracle. This boy saved my life.

As a parent of a child with a rare gene mutation, I probably take more pictures of him then most parents take of their children. The hard reality is that we will probably end up burying him. This is both a blessing and a curse to us. I don’t know what I will do when that day comes but I hope to be still caring for him, like I am now.

I take pictures like this one and download it onto a cloud drive and print it off so I will always have it to look at. I don’t ever want to forget his face, his laugh, his smile. I want to always be able to look at him and remember what true, unconditional love is.

I look at him and my eyes fill up with tears. My heart swells with pride. And no matter how crappy of a day I am having, I just have to look at him and he will put a smile on my face. He has a lot of issues, but no worries. He can’t do what most kids do at his age, but he is doing more then anyone ever expected. He can’t speak, but has taught me more about life then I ever imagined. He is getting heavy to carry, but I will carry him as long as I have to.

What do you see when you look at this face?

Tracy is a mother of two, with the oldest having X-linked hydrocephalus. This is a rare genetic mutation that causes the fluid in the head to not drain properly. She knew while she was still pregnant with him that he was going to be a very complex and special kid. She had been searching for other kids like hers and in the process she started a blog and a Facebook page to try and use social media to connect with others. Along the way she has come across so many great people with disabilities or people who are caring for someone with disabilities. She hopes to inspire and help others get through this crazy life through her writing and pictures, so they know they are not alone and that there is hope. Follow their story at on Facebook at http://www.facebook.com/xlinked1.