There have definitely been mixed reactions to how we (I) have chosen to share this journey so publicly. Not everyone believes it’s a good idea or is interested in following the journey. I totally get that and have learned to ignore the not-so-supportive comments because there have been SO many positive reactions. I have so many reasons for sharing my blog, pictures, and status updates and I’ve been thinking about them a lot more lately as I’m preparing to go back to work outside the home and will be forced to prioritize.
The biggest reason I love sharing our story and why I started in the first place is because it helps me feel connected to others. Yes, we have an amazing support system from all over the world. However, the day to day stuff can be very isolating and lonely. While so many people offer their support in a variety of ways, David and I are still very alone in this journey when it comes to the daily activities. I find myself logging on to Facebook several times a day and almost always have an encouraging message or comment from a friend or even a stranger. Late at night, I go back and reread posts, messages, and emails from people offering support and it is so very comforting. The words of encouragement give me the little boost I need to stay focused when the load seems too heavy to carry.
In addition to needing the support and loving the encouragement, we have already gotten connected to so many families with children with Apert Syndrome or similar conditions through Facebook and this blog. I’ve been able to talk personally with 2 families in Canada who knew they were having a child with Apert Syndrome during pregnancy and share our experiences with them. Oh how I wish we had had someone to talk to before Callie Anne was born and we could have been prepared with medical information and emotional support. There are already a handful of moms who call, text, or email me when they have questions about medical care, development, or just need some encouragement. I love being a resource for them just as I have a handful of moms whom I call when I need the same things. We are a tight knit community, but you have to be accessible in order for it to work. This blog and Facebook allow that accessibility and I am thankful for it everyday.
By sharing our journey, we have opened the door to so many new and renewed relationships. David and I feel so blessed to have met dozens of new friends since CA was born. We have also had the pleasure of renewing and nourishing relationships with our family and old friends. When people have to pull together, it brings you so much closer and it’s been wonderful for us and our extended family. We have had many old friends reach out and offer support. When I find myself feeling weak and asking “why?”, it’s comforting to think about the way so many relationships have changed because of Callie Anne and I can’t help but think it’s part of her purpose. She’s changed the lives of so many and made our lives fuller by bringing people into it.
One of my favorite things about sharing pictures and updates is the awareness it gives to not only Apert Syndrome, but anything that makes a child different. The more people know about her and see the physical differences, the less surprised they will be when they see her in person. I’ve found that when we meet someone, especially children, for the first time and they have been following her journey online, they don’t seem shocked and almost never say anything hurtful. They are interested, but accepting. The more we talk about the differences, the less they seem different. I know for a fact that there have been dozens of conversations at dinner tables about how to react when you see someone who looks or behaves differently because of Callie Anne. By sharing her story, we are opening the flood gates and forcing those conversations to happen. I truly believe that it’s up to this generation to change how we see children and adults with differences. If we talk about it and teach the right values, we can do away with so much pain.
Those who don’t believe I should share so much don’t see the emails and messages I get almost every single day telling me how their lives have been changed in some way with help from Callie Anne or us. I’ve heard many times that watching our journey and faith has helped someone else in their walk with God. I’ve heard from mothers how they’ve been inspired to appreciate all the little things and not “sweat the small stuff” after reading about something we’ve gone through with Callie Anne. I’ve been told that seeing David and I go through so much and stick together even when it is really, really tough has been good for their marriages. And after every picture I post of CA, someone calls, texts, comments, or messages me letting me know how her sweet smile made their day. How can I not share when it clearly means so much to so many people?
Life is hard. It just is. So, if something like a picture of a little girl who’s been through so much in her short little life can brighten someone’s day, then why not? So even though I’ll be going back to work and won’t have nearly as much free time, I will not stop sharing or blogging. People are invested in Callie Anne’s life and she will need that support for a very long time.