"I guess it started when Elias was about 5 months old."
"He was born as a healthy little boy, and he was full term and"
"the whole pregnancy was great. He developed normally, and we were just"
"as happy as could be, the five of us. We were very thankful to have a healthy"
"baby boy."
"When he was five months old he started showing some signs of just..."
"just something that made us a little"
"concerned, I guess. He just kinda slow down in his development."
"I remember specifically like he used to sit and eat crackers."
"He would hold it in his hand and, you know, put in his mouth, and"
"eat it. And then one day when we gave him his cracker he just could not"
"even bring you to his mouth. He kept missing his mouth and it went on his"
"cheek or"
"to the side, and we keep trying but he just couldn't do it."
"There were lots of other things, too, that it just seemed like he couldn't do"
"anymore, and he just did it a few days ago when"
"used as a 'mom mom ma,' and he sand 'da da.' He"
"even said 'blah blah.' It was the cutest thing,a nd he didn't do that"
"anymore."
"So finally we came in to the neurology appointment,"
"and the doctor he asked us a bunch of questions, and"
"I think we had waited so long that we felt we just battled for an hour"
"straight."
"And he looked pretty concerned, and when we were done talking"
"he said that he thought Elias had one of the leukodystrophies. And we were like"
" 'leuko-what?' We had never heard that word before."
"The doctor drew out some kind of picture of a brain,"
"and explained that it's a disease of the white matter of the brain."
"And we still didn't understand really how severe it was, but"
"I did ask the doctor because I have some concept I guess of cerebral palsy,"
"so I was like, 'Is it like cerebral palsy?'"
"And he said 'No, it's much more severe.' And"
"when the doctor said severe I just, to me severe just meant one thing in my mind and"
"it meant that it was really bad,"
"and that it wasn't gonna end well. So I just started crying and I"
"leaned over to Stephen. Even though the doctor hadn't said anything,"
"I just knew like severe is bad. And I started crying and crying,"
"and the doctor I was hoping he was going to comfort me and say,"
"'Oh it's okay it's not that bad,' but instead he went and got the tissue"
"box for me, and I cried even harder because I just knew it was awful."
"I remember that day so clearly because when we went into the"
"appointment it was a beautiful day, sunshine like today."
"It was in the fall, but while we were in there it just started pouring,"
"and I think rained for a week straight. It just rained, and rained, and rained."
"It just felt like those were my tears"
"from the sky." "I just remember feeling from the doctor,"
"you know, when he told us how severe it was, and I saw her emotions,"
Emma's emotions, I just had that feeling of being squashed to the ground. Just feeling like"
"you're two inches tall,"
"like just so much all this pressure all the sudden. The doctor told us not to go"
"home and look stuff up on the internet, but of course, you know, we go home and"
"everything we read was just saying things like"
"children live to maybe two years or less and,"
"you know, all kinds of things that aren't very fun to read."
"Quickly after Elias was diagnosed we were all so connected with StarShine"
"hospice and the transitions program." "That changed our perspective, I guess, of how"
"hospice and all those things work."
"I mean we don't know how long we have with him,"
"so we make the best the very day. We've always been a perspective of a day"
"at a time, and I think that's all we can do."
"I know it sounds crazy, but now it is almost like a gift because he's"
"taught us so much about life and about love and,"
"you know, I think at first when he was diagnosed I felt like I was being"
"punished for something, but"
"now these days when people tell me 'Oh god bless your family,' I just want to"
"tell them right back 'God bless your family' because I feel like we are blessed."
"And I know it's hard for people to understand that, but that's just how"
"I feel."