*This* is why I blog!

I haven't posted in a few days again... this post has been in the works, at least in my head anyway!

Every once and a while I hear a comment that my blog shouldn't be public. Not only is there a lot of information about my family out there but some people think we can be tracked down from the information I post. I have been very careful to not put too much information out, you won't find our full names, you won't find any address specifics - probably not even the town we live in, and certainly no details like license plates! BUT, even if we can be found, I would like to share with you why I take the risk.

I have heard from a few parents through the blog which is only published to people I consider my 'friends' and those who have children with HPE. Blogs tend to have a mind of their own and friends of friends with blogs sometimes happen on my blog through links. Just Monday I noticed someone arriving on my blog from a blog I had never heard of! I clicked on it, and found an adorable special needs child and their family. I don't know this little person, never heard of them, but his family is interested in mine... and I can't complain about sharing successes. Sometimes we need all the support we can get.

One new friend contacted me when Dylan was diagnosed with her Infantile Spasms. To let me know that there was hope, that her daughter was doing very well with ACTH having been the medication that she needed. We shared several e-mails, several difficult and several great stories and I know that she still checks in on us to see how we are doing.

Another new friend also contacted me about IS because her newly adopted baby was diagnosed. We have met several times in person and I consider her a dear friend. How fortunate am I to have met her and her family. I have learned so much from them in such a short amount of time. I have mentioned her before in a similar (but more brief) post like this and will probably mention her again. Lucky gal... =)

And the most recent instance was an e-mail I got from another HPE mom who asked me for feeding tips since Dylan's had some recent successes in that area. Her adorable one year old's story is very similar to Dylan's. From the HPE to ASD (and even more acronyms), to even some spine issues. They both had to have the Pyriform Aperture Stenosis repair when they were babies. It was her e-mail that inspired me to write this post because she clearly and concisely illustrated why I keep my blog public. Here is part of her e-mail:

"... I really found your website at a time when I needed it. I'm not sure why I hadn't ventured to your site before as I've visited several HPE sites. I notice your site on Carly's blog. Lila had been sick for three weeks straight and was simply miserable. Whenever she gets sick her reflux gets REALLY bad which always causes her more problems than the actual cold/cough she picked up. I was so down and started to think about Lila being so late with milestones (crawling, pulling up etc), and began thinking that perhaps the doctors were too optimistic, maybe she would never have much motor ability. Seeing all that Dylan has accomplished in her own time brought back the hope I've had and needed. Lila has also gotten better and is back to showing off her new accomplishments. Never doubt the power of your website and even more so, the hope others can find in your daughter!"

Honestly, even reading that brings tears to my eyes (I am a crier... so that doesn't always mean much... but this time it does). Not only have people contacted me to give me hope, people have told me that they have gotten hope from Dylan. What a blessing to hear! Connecting with another parent of a special needs child is wonderful since we have shared the same emotions. I think most of the time it makes for an almost instant friendship.

We do not create our family identity around Dylan's special needs. You won't hear us talk about it unless something interesting or wacky happens. Her diagnosis doesn't really matter to us, it is what it is. We don't compare her to other kids, Dylan is just Dylan... and awesome. We will treat her like she's normal, she just grows slower (to put it in one of her young cousin's adorable terms) and that's okay. It's no big deal. I am glad that this blog provided an opportunity for me to grow so comfortable with her diagnosis and share her with the world in the process. I consider myself lucky to have made some of the connections I have.

Though I can't see who people are when they visit, I can see where they are from, and I am amazed at all the visits we get from all over the country. Shout out to our neighboring states, there are a LOT of you! I am continually amazed at the people who I do not know that like to check in on us, and I know they get a good feeling when they read about something new Dylan's done. I just wish I knew who all of our visitors are, I wish I could shake your hand, thank you for visiting and do the normal pleasantries. I guess this virtual welcome from us will just have to do!

Lots of love from us to you!