Thursday, January 5, 2012


Dylan. In spite of everything, Dylan is my rock. The one thing that can bring me down to this Earth when I get caught up in it. He's the one being in my world that is constant, as strange as that sounds... because Dylan is anything but constant.

Dylan saved me. From what, I don't know. I don't want to know. But he saved me.

If you have ever met Dylan or spent a measurable amount of time with him, you can see that he is not like other kids. He's sensitive, to put it politely, and set in his ways. He prefers to play alone; a leader, not a follower.

Dylan has taken us on a ride, that kid. In August of 2008 we thought we could lose him.

For those of you that don't know, Dylan has recurrent brain inflammation. Caused by: nobody knows. He's been tested and evaluated for everything under the sun, but nothing matches up. He's spent a great deal of the past 3 yrs on steroids and in and out of the hospital. The worst time being the first time. He spent 21 days in the hospital and his entire central nervous system had shut down. He learned to walk, talk, eat, speak- all over again. He's a fighter (quite literally). He has had flare ups 3 times since then, hospitalizations required each time. I always relax once we are at the hospital.. I know he is in good hands. It is quite scary though because you can never know when a flare up can cause brain damage. It's hard to think that a mother could see a silver lining in such a serious situation, but I suppose you have to to survive. When Dylan is sick, it's me and Dylan against the world. I have to fight for him-even though he is so strong, he is strength. But I find peace in it. It brings me back down to Earth. I step back and see Dylan, and he needs me to do that sometimes. To reconnect.

He has been flare up free for 2 yrs this February. 2 Years!!!! He hasn't taken steroids since May '11. The longest he has gone without getting sick on steroids is 6 months and he has pushed past that. I can't say I'm not always observing him -looking for signs of neurological disfunction.

Dylan had to repeat kindergarten this year because he just was not where he needed to be to go to first grade. He has had learning disabilities since before he got sick though, so we have been working with Dylan since early intervention days and then he was put in a DD preschool program, which was a Godsend.

But this year, something is different with Dylan. He's doing so incredibly well. This is the second progress report I have gotten this year that looked exactly like this:

My heart sings when I see this! My boy is going so far, pushing forward every day. His speech is clearer, his comprehension is better and he laughs- oh his laughter is the sound of angels.

I'm so proud of you Dylan, if you ever read this - know that I'm rooting for you all the way. I knew you could do it! <3

Oh, and thanks for saving me.


  1. Ur a wonderful patient mother and dylan is fortunate to have u. Love u