Friday, November 14, 2003

Hard to believe it's been 2 years, but today is Jacob's birthday. What a fun morning we had. Last night Julie and I put together a Little Tykes car (the kind that he sits in and wheels himself around in) and we brought out his gifts. Sophie had chosen a Wiggle guitar that plays snippets of songs and various LOUD notes. Of course, he loves it. There was so much happiness in our home that it's easy to forget how insane it was when Jake was born.

Jules had been in the hospital for almost 2 weeks and I was driving all over LA between our (then) new home in Santa Clarita, Sophie's daycare in North Hollywood, my work in Hollywood and Julie at the hospital in Burbank. By the time Jake finally arrived, I was already exhausted!

He came to us early. Jake was originally due in December. But Julie was retaining too much amniotic fluid and they feared for her health. So her doctor placed her on bed rest. This was kind of tough for a couple weeks, but we all endured the hassle. As long as Mom and babe were safe, we could accommodate.

Notice I didn't say healthy.

No, Jake came to us with health issues. We all know what I'm talking about. But on that day we had no idea what the hell Cystic Fibrosis was. All I knew was that he had some blockage in his intestines, but that he should be okay.

You know, that whole weekend when he was born is a blur. We spent so much time in the hospital and then traveling to UCLA (where Jake was later transferred) that the whole chain of events sometimes gets out of whack. But it was one of those times when the entire family pulled together. It was the first of what has proven to be many times when Budd and Karyn, my folks and Julie's parents all stepped up and helped out without even the slightest "yelp" from Julie or me. We are a blessed family.

Cursed, a little but blessed a whole lot.

In the two years that Jake has been in our lives we have all grown so much. I think the person who has had to grow the most is Sophie. She's been there through every doctor’s appointment and every discovery. She's seen her mom go into the hospital, and then learned that her brother wouldn't be coming home as soon as expected. She has had to watch her baby brother go into the hospital on three occasions and has had to learn the general (kid friendly) facts about Cystic Fibrosis.

I sometimes worry for her. I sometimes worry what she will go through as she grows up and realizes what having CF means. It's bad enough to have to come to grips with the facts when it's your child but I can's imagine being a teenager and someone telling me Budd, Beth or Heidi may not...

I shouldn't go into this. Not on this day. Today is a celebration of his life. It's a celebration of his spirit and strength.

Laurie Anderson's "Superman" just came on over the computer. An eerie song. But Jacob is truly our little Superman.

I'm really looking forward to this weekend and having the party for Jacob on Sunday. I think he is grasping that this is his special day and all. I think he's learning what birthdays are all about.

As my own birthday was just a couple of weeks ago, I know that special feeling you get when it's "your" day. That's a feeling I want him to have his whole life, no matter what kind of obstacles he must overcome.

You know, that was truly one of the most remarkable days of our lives. When I held that little boy the first time I was instantly in love with him. I knew he was going to be special. Special not just because of his medical needs, but special in the way he was going to touch all of lives. And he really has.

I have seen sides of people (Budd, Beth and my dad) when they are with Jake that I rarely see (in public, anyway... I don’t know how they really act in private). I see optimism in their eyes... in their voices... their actions. Jacob does that to them. I think he allows them to hope. And we have to have hope. We have to.

You know, I've been listening to a lot of Rush (Canadian rock trio most famous for the song "Tom Sawyer') these past few weeks. I reconnected with their music back in 2001 right after the 9-11 attacks. Steve (who called last night... man I miss him) said it maid sense. He said that during times of tragedy you tend to latch on to comfort things... music, movies, etc. There was something about the lyrics in their songs that was, while at times grounded in realism, it did offer some words of hope. And when Jacob was born, I continued to listen to their songs.

Strange that I have come back to their music these past few weeks leading up to Jacob's birthday. It's as if I'm going through a ritual, preparing myself to celebrate this little guy’s life. And reminding myself, I guess, of how far we’ve come over the past two year... and how far we have to go to defeat CF.

There are days when I feel like there is no hope, when I feel like our lives are going to succumb to the pressures of trying to keep him healthy and trying to find the money to keep us going. There have been times when I wonder if a cure will ever be found. Those thoughts are fewer than before, but they come up.

But then a day like this rolls around. A special day to celebrate the LIFE of my son and the LIFE of our little family. And then I place aside those fears and doubts and hope comes back to me. Jacob's precious life reminds me of that hope. It gives me... it gives us all hope.

Happy Birthday Jacob Flynn.



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