Contemplations of a Mustard Seed Groupie
10-11-06
Jaymun still has a very low ANC
count of 16 today. It can take weeks and weeks to start seeing some progress
with his blood cells. He received another platelet transfusion this past
weekend. The doctors haven't told me if we'll be able to come home in between
this round of chemo and the next--if we do, it won't be for very long.
I'm in the process of weaning him. Most of the nurses know
how bitterly disappointed I am with having to do this. It wasn't my choice to
stop nursing him. The decision was made for us since we have no idea whether he
would acquire the CMV virus or not through the breastmilk
during his transplant. I am physically and emotionally hurting this week, if I
may be honest. The fact that I was able to nurse him through the chemotherapy
was the one bright spot in all of this tragedy...and now that's been taken away
from me as well. I felt like I could at least provide him with comfort during
his rough days and contribute to his nutritional and emotional well-being. Now
I feel like any person off the street can feed him. It's going to take some
getting used to. I hate the smell of formula and how he spits it up constantly.
I hate making bottles in the middle of the night. I hate that I can't
nurse him to sleep and I have to resort to pacing back and forth in the room to
comfort him. There was a rhythm to our schedule and it all feels somewhat
artificial now.
I'm so very frustrated with life these past few days. Don't
get me wrong, Jaymun is hanging in there. But he
has leukemia and that puts a pretty big damper on things. I never know if I'm
going to wake up during the night and find that he has a fever or infection.
I'm crammed in a tiny room with an infant who needs constant attention. I miss
my children horribly and I only get to see them once a week for an hour or
two--and that's if they don't have a cold or cough. I haven't spent very much
time with my husband that doesn't involve discussing medical issues. The bills
keep coming. Our air conditioner broke down this summer. Our van overheated and
Dave's vehicle got a crack in the gas tank. Our lawn looks horrible and the
weeds have overtaken everything. Our water conditioner needed an overhaul. Our
basement is half finished with no time to complete it since we had Jaymun.
We were going to convert a walk-in closet into
a small room for the baby--never even got started on that project. The property
tax payment was due. Ben and Kirsten need braces and there is not a surplus of
money to pay for them. It would appear that the "when it rains, it
pours" theory is alive and well. And none of these
things really matter unless Jaymun gets better.
I'm just plain tired of hospital life. It wears on a person.
I'm tired of having to decide between taking a nap or
taking a shower. I'm tired of being confined to a small room with a window that
overlooks parking lots. I'm tired of hospital food. I'm tired of the complete
lack of privacy with medical staff coming in and out constantly. I'm tired of
being woken up with machines beeping. I'm tired of worrying about blood counts
and side effects. I'm tired of doing laundry late at night because there's only
one washer and dryer and twenty four rooms on this unit (you do the math).
I'm especially tired of being reminded to have faith. Because sometimes, I don't.
I can almost hear the collective gasps of shock, but it's the truth.
I know God is somewhere in the midst of
this whirlwind. I know that He's watching our struggles and He feels our pain.
But I don't always feel encouraged by that knowledge because I don't always
feel His presence in a palpable way. That doesn't mean I've decided to disown
Him. It doesn't mean I've given up. It just means that sometimes, I feel
awfully human.
The worst part is, sometimes when well-meaning people are
trying to encourage or comfort us the most, they do just the opposite. The
phrase "God never gives us more than we can bear" gets tossed about
with such freedom. I hate that saying. What it means to me is
that people think God has "blessed" us with this trial because He
knows we're strong, stalwart individuals whom He has especially chosen to prove
to the world that we can take whatever comes our way. All of this is
more than I can bear, I assure you. And if I could bear it all on my own,
why in the world would I need God? I've been mulling this statement over and
over in my head and I found a blog that addresses it
perfectly. It's written by a pastor's wife who had a daughter with heart
problems at birth. She says it so well that I'd rather you just read it from
her perspective and know that I say a hearty "Amen!" to her message.
I can't say it any better than she does and Dave seems to think her style of
writing is similar to mine, so maybe that's why I relate so well to her.
After you read it, hopefully you'll realize that just
because I disagree with this often-used cliche
doesn't mean I don't appreciate people's encouragement to have faith. Because I
want to, I really do. I'm going to collapse without it. It's just that I need
people to know that unless you've gone through this, you would never know how
much you come to depend on God's help. You'd never know how utterly helpless
one human being can feel without some sense that there is a divine being
overseeing it all. I have to believe that someday, I 'll find out what the purpose was in our son being
born with leukemia. Believe me, someday I plan on
being first in line to get some heavenly answers to my questions. I have to
believe that God sees our suffering and His heart aches right along with us. I
want to be able to tell our children with no reservations that God has our best
interest in mind. It's just that right now, amongst all this muck, it's a
little hard to really hold on to that thought. I'm in the
faith-the-size-of-a-mustard-seed group right now.
I won't even pretend to be trying to bear all of this alone
on my own strength. My knees are going to be worn out by the time Jaymun gets through his medical treatments. I don't look down
on people who outright admit they're running a bit low on their faith. Rather,
I look up and try to trust that our burdens are being carried for us.
I take each day as it comes and I don't look too far ahead to the future. It's
the best I can do right now.
And if my God is
the God that I know Him to be, I know He understands.
