Last week was Father's Day, and we were blessed to be able to spend it with many of Brock's family who came into town to spend some time with us. Needless to say, last week wasn't the time to work on the blog and get a post up.
Before we get to the sweet poem Brock wrote though, here are some Damian & campaign updates:
Those who saw my post from a couple days ago know that this week was a hard one to watch. I'm not sure how else to say it, but Damian is getting slower. Being with Damian constantly, I know very well the nuances of seeing him process something in his head and after days of saying "he's been really tired today" and "he's having an off day," it's mortifying to realize that this could just be his new normal. He's tiring out more quickly. Yesterday he took a 5-hour "nap" and still slept through the night yesterday and the night before. While I am extremely grateful that he is sleeping when he's tired and that he still has a healthy appetite (most at this age with this disease do not, hence the failure to thrive), I just keep hearing that clock in my head ticking louder and louder and it's absolutely torture.
The bureaucracy and process of getting this first medicine manufactured is making me mental. Everyone involved (especially from the Wylder Nation Foundation) have been absolutely amazing so far and I trust 100% that they are all working as quickly as possible, but I'm still so restless waiting as I watch Damian's body deteriorate in real time. My fierce momma heart (and my ignorance) is making me just want to fight - I don't know who or what - as if that would help. I feel like I'm constantly praying to God and pleading "What. Else. Can. I. Do. To. Speed. This. Process. Up!?!?!" I always come back to just spreading awareness, asking people to share the campaign, and raising money quickly. That is what is going to make the biggest difference. So to those of you who are aiding me in this, please know I will NEVER be able to thank you enough. You are a true angel and a God-send.
Damian in the meantime, has seemed to only grow in positivity and is always lifting me up. He almost seems to know exactly what's going on and is constantly trying to tell me that everything is going to be ok. He is perfect.
Our immediate next step in this journey is an upcoming trip to New York, where we'll be meeting with Dr. Wasserstein, the most experienced doctor by far with this disease. We've talked with her via video call before, but this will be our first in-person exam. I'm hoping to get sure direction on whether Damian would benefit to beginning Enzyme Replacement Therapy now or not. ERT is a treatment currently available to those with Niemann-Pick Type B and takes care of the Sphingomyelin build-up pretty much everywhere but the brain (the treatment specifically for the brain deterioration is what I'm raising money to finish developing). Damian will have to start ERT at some point and there is a process to getting it going (OF COURSE), so hopefully we'll have a clear path forward after this visit. Brock and I are also hoping to get our own genetics tests done to confirm which gene mutations each of us have, and that we are merely carriers and don't have Type B ourselves (many with Type B aren't diagnosed until they start having issues as adults) - it's unlikely that we have it, but it'd be good to confirm.
*Deep breath* Thank you all for being here. I don't want to sound like a broken record, and I'm trying to come up with new ways to say "thank you," but I'm finding that English has its limits. Please know that your love and support for our family truly truly means everything to me.
Ok, let's talk about Brock :)
Brock is a very loving father to his mini-me. And likewise, Damian absolutely adores Brock. One of Damian's very first words (maybe his third) was "Daddy." It's definitely his favorite word to say! Whenever Damian sees my phone, he yells for Daddy (he knows I can call him when he's gone). And, like he did last night, when the front door starts to rattle Damian gets so excited and attentive because he knows his wrestling buddy is about to come through the door after another long day at work (last night he frantically started waving his arms around like he was dancing with the biggest grin on his face when he heard Brock at the door!). And no one can get Damian to fall asleep like Brock can - maybe it's the natural heater that is Brock's body, or maybe it's because Brock falls asleep first and Damian (who is constantly trying to copy Brock) just follows suit.
Since the day Damian was born, Brock has meaningfully told him every night, "You are handsome, you are smart, you are loved, and you can do anything." The encouragement and build-up that Damian consistently gets from his daddy I am sure contributes to my sweet boy's overwhelmingly positive demeanor.
Last Sunday, on the day where we should be celebrating Brock and all that he does for our family (and rightly so!) , I was surprised when Brock told me that he'd written a poem for Damian for Father's Day! I videotaped him reading it out loud, but it feels a bit too sacred to share right now - maybe we'll share it another time.
Brock did want me to post the text here though, and of course I am happy to do that! So without any more stalling, here's Brock's poem from Father's Day:
Some time ago, a man and his wife
knelt together in prayer like they do every night.
But this prayer was different; when they each bowed their head,
in their short faithful prayer, this is what the man said:
"Heavenly Father, we are grateful to thee,
for health and for friends, and for family.
We ask thee please, to make this house a home;
Lord, please send us a child of our own"
The Lord heard their prayer
and much to their joy,
from heaven was sent
a sweet baby boy.
Born with bright blue eyes
and a head full of brown hair.
He is happy and calm,
any fussing is rare.
He loves to read books,
and play piano with his mother.
Both parents agree,
he is a treasure like no other.
Every heart melts
with his wave and his smile.
A laugh from this boy
makes any hard day worthwhile.
But after some months had gone by,
these parents knew something was wrong.
The doctor confirmed that if left untreated,
their darling boy would soon be gone.
"Why?" They asked.
"Why our precious little guy?"
Their pleading with the Lord
was met with this reply:
"Your cherished young boy
is an angel on earth.
A brave, valiant warrior
in heaven before birth."
"When you prayed for a child,
he wanted to come to you.
Before he left, he knew
he had a mission to do."
"Accepting this imperfect body,
he willingly agreed
to lead and help others
with a similar need."
Damian, my son,
it is truly an honor
that you've given me the privilege
of being your father.
Now remember, Damian,
this really important thing:
You are handsome. You are smart. You are loved.
And you can do anything.