Diagnosed with micro-cephaly, 3-year-old Jack Lyman lights up when he hears an Elmo song. (photo courtesy Katie Lyman / September 6, 2012)

Sadly, Jack died on Sept. 6, just after this story was originally published.

For the first time since her son was born nearly four years ago, Katie Lyman is doing what she's always wanted to do: be a mom.

Since he was born on Oct. 16, 2008, Jack Lyman has been in and out of the hospital, suffered through surgeries and hasn't been able to see his parents.

Jack was diagnosed with micro-cephaly, something so rare doctors have no idea what causes it, Katie Lyman said. His brain hasn't developed the way it should.

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"When he was born we were told if he makes it a year we should consider ourselves lucky," she said. Doctors weren't sure he'd make it two weeks, the fact that he's almost 4 I think is a blessing."

Jack has bucked the odds and while it's been difficult for Katie and her husband, Will, she wouldn't trade it for anything.

Now that Jack is in hospice, Katie is spending all day, every day with him, doing the things she's always wanted to and leaving his medical care to others.

"It really is nice to just be his mom. It's a blessing, just what I wanted to do this whole time and wasn't able to do - coming down, loving on him, snuggling with him and just being his mom," Katie, a 1995 Bel Air High graduate, said. "It's a relief that way, that I'm not in charge of all his daily care. You can only do it for so long."

Jack is living at Dr. Bob's Place on North Eutaw Street in Baltimore, doctorbobsplace.org, where Lyman drives just about every day to be with her son. She leaves their Jarrettsville home between 8:30 and 9 a.m. and drives the hour downtown. Will leaves work and gets there between 5:30 and 6 p.m., they stay until 6:30 or 7 then go home by 8.

"And we do it again the next day," she said. "They're late nights and it's tiring, but what else am I going to do?"

Developmentally Jack is 4 to 5 months old, which means a lot of cuddling with his mom.

"I feel truly blessed he was in our lives this long. He's just the best little boy in the world, he makes your heart swell. You can't look at him and not smile," Lyman said. "He so wants to be held and cuddled and loved all the time. It's so precious to us, because if he were a regular 3-year-old boy I'd have to chase him down to get a hug. In his mind he wants that all the time, so I sit in a chair and rock him, and I'm more than happy to do it."

Jack can't see, he's never been able to, but he loves music of any kind, but especially kids music. And he loves Elmo.

"He really responds to music and sound and he just lights up at Elmo," Katie said. "He is the sweetest boy there ever was. He's so pure-hearted. When he's feeling well, he's laughing, clapping, smiling, playing. Not a whimper, not a cry, nothing. Unless there's a reason, pain of some sort, he doesn't cry. He's a very happy boy."

At this point, Katie and Will are only concerned that Jack is comfortable.

"Him in pain is not acceptable. You don't know what's wrong, you don't know how to fix him, the least you can do is keep him comfortable," Katie said.

Complicated pregnancy

Jack was born the day before Katie and Will's first wedding anniversary.

Katie carried him full-term and was inducted at 39 1/2 weeks. They knew from early in Katie's pregnancy that Jack could face problems, but they wouldn't know to what extent until he was born.

At Katie's first sonogram, doctors saw an issue with the baby's heart, and they were warned of possible heart defects. They went to see a prenatal cardiologist at Johns Hopkins.