This past weekend was a full one as we celebrated a HUGE milestone in Damian's life!
Weekend Celebration
Most of Brock's family (parents and all but one sibling - and their families) were able to travel out here to California for the weekend to celebrate Damian turning five years old (that age sounds SO OLD I still can't believe it!!!).
The weekend was full of activities, like going to Universal Studios and watching Brock perform there (he is a stunt performer at Universal's "Waterworld" stunt spectacular) and going to the preview night of Brock's new play he's in at our local theater.
It's been several months since Damian and I have been out in such a public space (well, more public than Costco haha), and of course we were geared up in all our "Please Save Damian" shirts when we went to Universal. I was so touched by all the love we received from people who saw our shirts and stopped us to talk and ask questions and offer their support right then and there.
And the cast of Waterworld made us feel like celebrities! Just before the show started they gave Damian a special shoutout and had the entire audience shout "Happy Birthday Damian!" It meant the world to me!
Later that weekend when we attended Brock's play (which was so fun, by the way - if you're local you should see it!!), the cast and crew surprised us (even Brock was surprised) at intermission by bringing out cupcakes and balloons and even a sweet birthday gift, with everyone singing Happy Birthday to Damian. Talk about feeling loved!!
I'll say it a million times: people are so good.
The Big Five!
Those who have followed us for awhile know why this number was so monumental. In case you have joined our journey more recently: we were told shortly after Damian's diagnosis in 2021 that the vast majority of babies with ASMD don't live past the age of 3. We were told that while Damian's case was more mild, we probably couldn't expect him to live to be 5.
I'll be honest, the past several months of doctor's appointments have been increasingly frustrating, as each doctor told me, "Wow, it's honestly amazing that he is doing this well at this age. This isn't typical. You should be so grateful he is doing as well as he is right now, because you know he's only going to [blah blah blah]."
Yes, I am grateful. I'm so grateful for how far we've come. For both the treatments Damian is on. For the additional treatments that are in development and for the expedited speed at which they are developing now. I'm grateful for the peace that I continually get fed with every time I pray that reassures me that I'm on the right path, that everything is going to work out as God needs it to, and that He is completely with us on this journey. I am grateful for the positive light Damian has that has only continued to shine brighter every day. I am grateful Damian is his happy, optimistic, loving self and so immensely grateful he does not seem to be distressed or suffering. He is the strongest human I know.
I am grateful. But I'm not satisfied - and I'm not settling. There is still a lot of progress to make and we're here to win this.
Because when I sang that end to the birthday song this weekend, I meant it:
"Happy birthday dear Damian, happy birthday to you... and many more"
<3
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