The Friends I Have Never Met

The world is a very different place, than it was when I was young. Sometimes it is hard to remember what it was like before the internet. It was a simpler time and I do miss it sometimes, but then I think about how different our journey would have been without modern technology. The countless hours I have spent researching Emmett's symptoms, new therapies, and doctors, would have literally taken me years to navigate, without the internet. I never would have heard of some of the best treatments out there and I don't even want to think about how many times I would have gotten lost on my way to one of Emmett's appointments, without navigation on my phone.
One other thing that would have been profoundly different, without modern technology, is my network of friends. I am blessed to say that I have an amazing support system of family and friends who love Emmett unconditionally, but I also have a whole other network of "friends" that I have never met. These are the families that I have connected with through online support groups, that never would have existed without the internet. These are people from all over the world who are on a similar journey. Some of them have children with only a few similarities to Emmett, while others have the same diagnosis.
Even though we have amazing family and friends, having a child with special needs can still be lonely at times. However, being able to connect with other families, who face similar challenges, has made this journey a lot less lonely. These groups have been a great place to vent, share ideas, ask for advice, and share exciting progress. The past few months have been especially exciting because we are beginning to connect with other families that have children diagnosed with Xia-Gibbs Syndrome. When we were given the diagnosis in November, we were told that there were only four other known cases. We don't know much about the syndrome yet, but it has been interesting to compare notes and see how similar our children truly are.
I may never meet a lot of the people that I have been in contact with and I may not even know much about them, but I do know that having them to relate to has been a lifeline for me. The internet can be a dangerous place, but it can also be a great resource to connect with people in a positive way, to encourage them, give them advice, and let them know that they are not alone. So, thank you to all of the friends I have never met. It is good to know that I am not alone in this journey and I hope that I have been able to help some of you, like you have helped me.

How God Prepared Us for Emmett

When I used to think about getting married and having children, I never really considered the possibility of having a child with special needs. While I was pregnant, we never considered doing any extensive tests to determine if our unborn child would be born with anything out of the ordinary. We weren't oblivious to the possibility, it just didn't matter. No matter what child God gave us, it wouldn't change how much we loved it, so we chose not to do any testing. Standard prenatal screenings wouldn't have detected Emmett's syndrome anyway. A few months ago, I started thinking about how God prepared us for Emmett. The more I thought about it, the more I realized He had been preparing us for most of our lives.

Although my husband, Seth, and I had never met anyone with Xia-Gibbs Syndrome before Emmett's diagnosis, we did intimately know people who faced challenges in life and we loved them unconditionally. My first experience with someone who had a physical impairment was with my dad. He was severely injured in an accident as a toddler, which left him with only two fingers and a thumb. Although he may have looked strange to others, he was just my dad and he learned how to do just about anything, with very few limitations. I think that by seeing what my dad had overcome, it helped me realize that you shouldn't put limitations on people, regardless of their disability or diagnosis.

When I met Seth, I quickly learned that he had a twin brother, Nathan. He was mentally impaired and epileptic, as the result of a childhood illness. Although Nathan had his challenges, his family treated him as an equal and had high expectations of him. He was a hard worker and had a child-like spirit that could always brighten your day. I only knew Nathan for a short time before he passed away, but I am thankful that I got to know him and it gives me hope that Emmett will be happy and accomplish many things, even if it isn't what others perceive as normal. I truly believe that having Nathan as a part of the family, helped prepare us for Emmett.
I'm sure that my dad sometimes wondered why he had to lose his fingers and I know that Seth has wondered why his brother had to get sick. No one truly knows why these things happen, but I do know that these circumstances did help prepare us for our journey with Emmett.

I also often wonder why Emmett has Xia-Gibbs Syndrome, but I can't help but think that what we are going through now will help someone else along the way.