
Jaymun Foundation

Contemplations of a Mustard Seed Groupie


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.