I've thought long and hard about how I wanted to share this story. Do I tell the story from the perspective of Shanna, or Caleb, or as an outsider looking in? How much of this very personal journey do I share with the world? What if I miss something? What if I say the wrong thing? How do I put into words and pictures what this beautiful family has endured with all it's emotions, both good and bad? Although this a story about the entire family, especially sweet baby Caleb, I'm calling it Shanna's Story because I always find myself telling stories of motherhood. I'm totally and completely amazed by mothers. Now that I know first hand what it's like to give up your body and soul - put your whole self aside for someone else - I find myself so drawn to sharing the realities of motherhood. We're all the same, yet our lives are all very different. I felt an incredible connection to Shanna as I listened to her tell stories about what life is like as Caleb's mommy, so it only makes sense to share this story through the eyes and heart of a mother. I guess the only place to start is at the beginning. This is Shanna's Story.
As most of you already know, I'm a huge fan of babywearing. I wore both of my sons in wraps and various soft structured carriers and absolutely loved it. While scrolling through my facebook feed one day, I saw a post to a babywearing group that immediately grabbed my attention. It was a post made by Shanna. She wrote that she had waited a year to be able to wear her son, but the day had finally arrived! With her post, she shared three photos of herself with Caleb wrapped up snugly to her body and she had a huge, excited smile on her face. Her excitement was infectious. Within minutes, hundreds of group members shared their support by "liking" and commenting on her post. It was like all the babywearing mamas in the area could feel what she was feeling. And it was incredibly inspiring. My first thought as all of this was happening was, "She needs to have this incredible moment documented with some beautiful photos that she can cherish forever." I sent Shanna a message explaining that I do babywearing photos and I'd love to do a mini session for her. As we chatted back and forth, and Shanna told me all about her son's disability, we decided to do a "day in the life" type session in addition to the babywearing photos. To me, photographs of reality are always the best kind of photo. Shanna agreed that she wanted to be able to look back at the reality that is caring for her baby because it's such a large part of her life right now. And that's just what we did.
When I arrived at Shanna's house, I was so warmly welcomed by the entire family. This Saturday morning was just like any other. Dad was getting ready to bring Big Brother to baseball, the oldest children were finishing up breakfast, and Mom was finishing up 1-year-old baby Caleb's morning treatment. While everyone was rushing around, I saw this sweet baby laying in a chair with his arms constantly wiggling around.
Caleb was born with a very rare chromosome disorder called Miller-Dieker syndrome and lissencephaly. Instead of a brain with lots of folds and wrinkles, Caleb's brain is smooth. Without his brain working properly, his body struggles to keep him alive. His brain isn't able to tell the rest of his body what to do, including basic survival instincts like breathing and eating. The machine you see here is doing those things for him. Caleb's treatments include monitoring oxygen levels and giving him vitamins, "food," and medications all through the tubes attached to his body and this machine. At this point, I bet you're all thinking exactly what I was thinking when Shanna was messaging back and forth with me explaining Caleb's disability... How does a parent handle something like this? The answer to that question is with grace and love. I could see it the second I met this incredible family.
I'll admit that it was difficult for me to finish editing these photos because I found myself choked up every time I sat down to work. But not because I felt sad for this family. It was because I felt so much LOVE in this family. Deep, unconditional love, and an incredible unwavering faith that shines through them as strength and positivity. They know Caleb was meant to be here and that he was meant to be their light. And they believe God sent them a gift when He sent them sweet Caleb.
As I talked with Shanna during my time in her home, I heard stories of how Caleb stopped breathing as an infant and Shanna used her own breath to keep him alive. She said that in those moments, she wasn't able to panic or cry because she didn't have time. We talked about how you have no idea how you'll react in moments of desperation like that, but somehow your body and mind just take over and do what needs to be done without even stopping to think about it. I heard stories about the day Caleb was born and how scary it was waiting to find out what was wrong with her new baby, even though she knew in pregnancy that something wasn't quite as it should be. I learned about how much time Caleb's treatments (4 times a day) take, and how rare it is that the entire family goes somewhere together because of it's difficulty and risks to Caleb's health. I also learned about the incredible strength of a mother when she's her child's only voice. As we discussed all of Caleb's medical issues, Shanna told me that he helped her to find her own voice and become a stronger person. She once was quiet and didn't often speak up about things, especially in a doctor's office. But now she's strong and confident that she knows what's best for her son, and she doesn't back down no matter who is sitting in front of her.
During my time in her home, I told Shanna that one of the things that amazed me, and made me gravitate toward her, was her incredible positivity and infectious smile. I was, and still am, in awe of her strength. She told me that she tries to appreciate and celebrate every day that she has with Caleb, because the doctors predict that he may only be with them for a short time. Every day that they wake up and Caleb is with them is truly a gift and a blessing, and she tries to always keep that in mind. Being ever so humble when I complimented her on her strength, Shanna admitted with tears in her eyes that there have been times she found herself slipping. There have been times where it seemed like so much to handle, but she focused on her faith in God and started taking better care of herself by eating right and exercising, and it helped her get right back on track. For some reason I can't explain, that stuck with me. Parenting is hard. Being a mother is draining, and often times Mom's needs are put last. I'm guilty of this myself, and I'm not caring for a baby with special needs. So to hear Shanna say that she could pick herself back up again by investing some time and energy into herself and focusing on her faith was so inspiring. She is truly an amazing woman.
As I looked through the photos from this session again and again, the photos with Caleb's attentive and caring big sister were the ones that brought tears to my eyes every single time. Her love and tenderness toward her brother can't be put into words, so I'll let the photographs do the talking. It's so clear that this beautiful girl has the same heart as her mama.
Shanna, I can't thank you enough for allowing me to document these moments for your family. The world needs more people like you. Your light and love is truly contagious. And your children are so blessed to have you as their mommy.
Okay, I'm going to shut off the tears now so we can take some time to celebrate the occasion that brought us together! Congratulations to you and Caleb for reaching this amazing milestone! I know you are so thrilled to finally be able to wear your sweet boy! I know the entire babywearing community couldn't be more excited for you both!
To learn more about Miller Dieker syndrome go to: https://ghr.nlm.nih.gov/condition/miller-dieker-syndrome
To learn more about lissencephaly go to: http://www.ninds.nih.gov/disorders/lissencephaly/lissencephaly.htm