Sunday, March 30, 2014

Trust, Faith, and Letting Go

We don't attend church in the winter; unfortunately, being in such a crowded area (our church is oftentimes full, and with good reason) is just inviting germs to rub all over us.  Instead, we watch a program on Sunday mornings called In Touch with Charles Stanley.

It is astonishing how often his message for the day is directly in line with something that is troubling me, or something that I am struggling with, or a question I need an answer for.

I have pumped for Lucy her whole life.  Manually until she had her g-tube surgery, and then with a mechanical one afterward.  I have pumped through mastitis twice, and every thing else you could imagine.  Hours have been spent producing what is an extremely important part of Lucy's diet.  I always said that I would pump for Lucy as long as she needed it; until she was 25 years old, if that's what was required!

And I thought that it would be easily possible - supply meets the demand, right?  If I pump often enough, long enough, my body should respond.  I don't know how it works if you have a child who is actually nursing, but around the 2 year mark, that stopped being true.  I wasn't making enough to keep up with Lucy's daily need, and it was terrifying and stressful, which made me produce even less.  I started taking domperidone, and my supply was boosted - so much so that I was even able to start freezing extra!  I figured I was good to go, and relaxed.

But even the domperidone couldn't keep my supply up forever.  It started to drop again, and I started to be plagued by constant injuries.  I took other supplements, and some worked a bit (or were at least tolerated,) some my body reacted strangely to.  I switched pump parts, hand expressed until my hands cramped, cut down time on sessions.  The supply continued to slowly dwindle, the injuries would not heal.  Eventually, we had to alter Lucy's diet to include less breastmilk, which worked out perfectly anyway, as it seemed she was getting too much fat.

It went on for awhile, and I was able to meet the new demand.  I could work around the pain if it meant that Lucy was getting what she needed; I'm her mom, it's what I'm supposed to do.  But again, the amount dropped. I had developed mastitis, and while I was taking the antibiotic, I stopped the domperidone.  Without it, I was making nothing, but continued to pump so that I could resume it afterward.  After I started it again, though, I was only making half of what Lucy needed, and it never returned to the full amount.

I had to start reaching out for breastmilk donations.  I was also dealing with some health issues; nothing major that I could tell, just some fluttery heart business.  I cut my sugar intake, avoided all caffeine, and for the most part, it seemed to resolve.

Then someone shared an article online about domperidone and its relation to heart issues.  I was reassured that these issues were only seen with the IV form of the drug, and in women over 50, with underlying conditions.  I absolutely believe that, but I couldn't shake the feeling that I was meant to see that article, at that time, for a reason.  It nagged at me, so I prayed about it.

It was an extremely difficult decision to discontinue the domperidone.  I knew what it meant for my supply.  I wasn't sure that it was in any way affecting my heart, didn't see how it could be, but stranger things have happened.  Hello, SMA!  Since it had been a serious enough issue for my doctor to order an EKG at one point, I didn't feel that taking any chance that it may affect me was a prudent choice.  Noah and I are the only ones who know how to care for Lucy, and if something were to happen to me, I'm not sure what they would do.

At first, I was still getting an ounce a day.  I thought that I'd keep pumping; I could just add that ounce on top of the donor milk, and at least Lucy would be getting a little bit of the antibodies I was producing that were relevant to what we were exposed to.  And then it dropped lower.

And I started to think about how much stock I was putting in her getting my milk.  Not just breastmilk in general, but my milk.  How I was providing her with antibodies.  How she hasn't been hospitalized with illness since she was 4 months old.  How she rarely gets ill at all, period, even when we KNOW she's been exposed to illness.  And I started to think about how much credit I gave myself for that happening.  After all, she's getting my milk; I'm making the painful sacrifice to provide this for her, so her good health must be a result of that, right?

I realized that my mindset about it had nothing to do with trusting God to take care of her; instead, I was giving my own actions weight that they may not deserve.  It's true that we produce antibodies that are carried through the milk, and that can help fend off and fight off illness.  The fact is, though, that there are other children who get exactly that, and are sick more frequently than Lucy.  I was seeing it as a situation that I had control over, through my actions.  With SMA, you have very little control - sure, you can utilize breathing interventions, choose diet options, practice lockdown and all of the germ avoidance you can - but ultimately, there are situations we see where everything has been done "right," but life still ends.  We can control all of those things, but we can't always control the outcome.  And that's a hard, scary thing to face.

So in my continuing to pump, long after it ceased being comfortable, or even tolerable, long after I was making enough, or even anything that would make a difference, I was clinging to this imagined control.  I'm not saying that pumping isn't the greatest thing to do for an SMA kid if you can, if it works in your life - it is!  It's wonderful, and I know there are other mothers who have embraced the long-term pumping lifestyle - some for longer than me, which is SO amazing and admirable.  But I've come to realize that I was clutching at it for the wrong reason.  I was seeing it as a way for me to control Lucy's outcome... putting an almost superstitious faith in it.  In reality, God used me to produce for her when it was useful in our lives.  When it turned into me trusting the product of the pumping more than trusting God to take care of her, it was no longer useful.  That's not to say that we should abandon all precautions and preventative measures and proactive practices in favor of "trusting God to take care of her" - He imbues us with the common sense to make the right decisions for her, prudent choices, practical choices, and we are not to tempt Him.  But I needed to come to grips with the fact that there is nothing that I can do to guarantee Lucy's life.  There are certainly steps I can take that have been shown to keep her healthy and strong.  But it's not a guarantee.  All I can do is trust that God can take care of her, with or without my help, and will be with her throughout her life.  How long or short that life is is ultimately His will.  When Lucy has accomplished her purpose on this Earth, it will be her time.  My job is to make sure she is happy, and healthy, and comfortable, and to be a good example of faith.

So I'm quitting.  I'm letting go of this "control."  I was very scared to make such a final decision.  I've seen other SMA parents doing the milk search online - it's not always easy.  But I've reached out, and donations are already coming in, and I'm so grateful and so relieved.  God is working through so many to get Lucy the food she needs, and seeing so many step forward has affirmed that my decision was the right one (along with lots of praying, and back to back sermons addressing exactly my situation with fear and trust and faith.)  Prayers are always appreciated - that she will tolerate the milk from the new donors, and that her illness-free streak will continue.

We are still working toward Lucy's addition, and some new steps have been taken!  It's closer than ever!  My next blog post will address all of that :)  Thank you for your unending support!


Jessica said...

Oh, barb, I know this decision must have been very difficult for you. I pumped for Nicholas for over a year while nursing Ella and when my milk finally dried up (when with domperidone) I remember feeling like a complete failure, even though I had given him my milk for 14+ months. You're such a great writer and I completely related to this post. I hope that you do find donor milk for Lucy. I also love your trust in God who makes all things possible. I thrive on that same trust and it has made such an amazing impact on my life. God bless!