If you want to read earlier posts from the Cancer Series or learn more about why I am posting these personal blog posts years later, you can do that here. This particular excerpt comes from the private blog that I maintained through MyLifeLine.org at the time surrounding my cancer diagnosis and treatment. It highlights the emotional and logistical struggles that I was moving through. I was trying to reconcile the attachment parenting choices that I wanted to make (i.e., exclusive breastfeeding and child-led weaning) with the gravity of the illness that I was facing, coupled with my intense desire to do everything in my power to increase the likelihood of the success of my cancer fight. It recounts my attempts to meet my infant son’s nutritional needs in a way that was healthy for both him and for me.
Although I did not know it at the time, in addition to Asher dealing with a mommy who had cancer, I was dealing with a child who had multiple food allergies and feeding delays (we still attend feeding therapy regularly four+ years later). This is our journey through weaning. I am posting it here to relay my experience and my story. It is not to be construed as medical advice, or any kind of advice for that matter.
This entry was originally published on February 9, 2011, approximately three weeks after I began my radiation treatments.
Let’s cut to the chase. I’m tired. Actually today is better than the past two days have been, which is why I have the energy to at least get to item #26 on my “to do” list for the day and post a little update. Undoubtedly, the fact that three weeks ago Eva was home sick the whole week, and two weeks ago Alina was home sick the whole week, and last week the Blizzard of the Century kept everyone home most of the week all contributed to my general exhaustion. I think there’s more to it than that. I’m not sure if the current fatigue is due to the radiation itself or to the need to get to radiation every day or both. I’m hoping that at least a big part of it is due to the need to get to radiation every day, and will thus be temporary.
I go to radiation every morning right after I put Asher down for his nap. This means that the time that used to be my least parentally-demanding portion of the day is now unavailable to get laundry, dishes, cleaning, cooking etc. done. Nevertheless, all of those things are just sitting around still waiting for my attention later in the day without regard to how tired I am feeling. This brings me back to the radiation itself. I do think that the actual radiation is making me tired too. The last two days I woke up wondering how soon it would be before I could get back into bed, and my limbs felt a bit too cumbersome to both lift and move. Bleh. But enough about the tired, let’s move on to the next thing.
Weaning. It’s been almost 48 hours since Asher last nursed. It makes me sad. He’s doing pretty well with it overall, but it makes me sad. And did I mention the sad? In a quiet moment, I took this video of me and Asher on my third day of radiation, when I knew that our days of nursing were numbered. Rich offered to take it for me, but I really wanted to just remember what it looked like to gaze down at Asher while he nursed to sleep. He always rubbed his hand back and forth across my stomach while nursing. I think that it was his comfort object. I guess that’s the best reason to have a soft mommy belly.
To clarify, according to several of the most respected breastfeeding authorities, it is believed to be safe to continue nursing through radiation. In fact, the only instance in which nursing is thought to be contraindicated with radiation is in the case of breast cancer. Even then it is believed to be okay to nurse on the side that is not receiving the radiation. Tuck that away as an interesting fact, because both the nurse at the radiation oncologist’s office and the La Leche League leader with whom I spoke told me otherwise. If I hadn’t challenged them based upon other research that I had done, both they and I would have continued to believe this incorrect information.
So, you ask, if it’s safe to breastfeed then why am I weaning? (Side note: Did you all know that Rich, Alina, and I were the “faces” of La Leche League’s national capital campaign in 2007? We were. Did you know that I have spent every day of the past 8+ years either pregnant or nursing or both? I have. Do you still wonder why I’m tired? I don’t.).
Jokes aside, breastfeeding is very important to me for many many reasons and has been a big part of my mothering relationship with each of my babies. I was not eager to wean Asher so soon. In fact, I have never weaned my children. I followed the girls’ lead on that, but by the same token it is very important to me that I do everything that I reasonably can to restore and maintain my good health so that I can mother my children until they are parents themselves.
I had the very strong feeling that I needed to stop nursing to allow my hormones to regulate. My body does not seem to respond well to the hormone fluctuations associated with pregnancy/nursing (menopause is going to be FUN!) I didn’t want to make this fight any harder on my body than necessary. I also wanted to conserve my body’s energy for healing rather than producing food. In addition, I was hoping that not nursing at night would allow for better sleep, because radiation is exhausting and my body needs the sleep time to repair from the damage done by the treatment. Most importantly though, was my desire to be able to really pursue cleansing and detoxifying my body following radiation, cancer killing, surgery, etc. I can’t detox while still nursing, or my body will dump the toxins into my milk, and then into my sweet boy, and that’s not a good option. So, here we are at weaning.
Now, this is an appropriate time to remind all that both of the girls are on gluten and dairy free diets as they seem sensitive to gluten and dairy. Asher too showed sensitivities to gluten, dairy, soy, and nuts through my milk, so I rarely ate any of those. This presented me with the challenge of what to feed him if my milk, and soy or dairy-based milk substitutes weren’t going to be an option, and he was heretofore exclusively breast fed. I tried him on some food (mushed avocado and applesauce). That was a disaster. He hated both, and clearly kept trying to figure out how to get the liquidy evil off of his tongue (he tried gagging, drooling, crying, etc.) He also got all rashy, and the whole thing was generally bad news.
My next step was to look into breast milk banks to see about acquiring alternative human milk for him (before you judge: just how well do you know the cows making milk for the local grocery store? I figure that at least we’re talking the same species here). Well, guess how much milk from a milk bank costs. Just guess…..Okay, so milk from a milk bank costs four dollars AN OUNCE. So after writing Alina a bill for three trillion dollars and talking with my insurance company who said that they would not cover the expense because Asher did not have a medical need (no, just the lady who MAKES the stuff), I looked into other resources. I found two, well, actually three.
1: Friends who know people who lactate 2: milkshare.com 3: Eats on Feets. The latter two are organizations designed to connect moms in need of donor milk with women willing to donate milk. Through these three channels I have been able to find four generous and kind women who have agreed to provide milk for Asher. They have also provided me with copies of their pertinent medical tests and patiently answered all of my many questions (there are questionnaires to guide moms through what to ask potential donors).
Now my freezers are stuffed with milk for Buddy, and we’ve been able to take on the weaning process. *FYI for those still concerned, we follow the recommended procedures for flash pasteurizing Asher’s donor milk to kill potentially harmful viruses or bacteria. This surely degrades some of the amazing health benefits of breast milk, but it seemed to be a reasonable and responsible compromise versus formula feeding. Check out this video if you too want to learn how to flash pasteurize for some such reason.
**Second FYI, no I can’t find donors who are gluten, dairy, and nut free AND other mothers do things like take medication or drink caffeine GAK! The loss of control has me reeling, but I’m trying to be very zen about it all. That said, Asher has developed a white coating with a big white spot on his perfect formerly-pink tongue since starting donor milk, any suggestions? (I don’t think it’s thrush by the way, but what do I know?).
Weaning has been a series of fits and starts (Ha! I so did not mean for that to be a pun, but I guess it is. Yuck. I don’t even like puns. Anyway, moving on). At first we started with night weaning and after a bunch of sad and screamy nights it seemed to be going pretty well. Then Asher got the cold that Eva and Alina had. That put the kibosh on the weaning and he was back to nursing at night.
He never really took a bottle, but we were able to get him to consider using a sippy cup. He was taking in about 6 oz. of donor milk each day, and nursing the rest of the time. Over the past few weeks we have worked his donor milk intake up to 25-30 oz. per day, although he was still nursing once or twice a night.
Last night, Rich and I finally got our acts together enough to flash pasteurize milk and set it on ice in our room in anticipation of Asher waking up. I warmed the milk in our sink and fed Asher that when he woke up at 2:30am rather than nursing him, and voila! Just like that it’s been almost two whole days since I’ve nursed.
I’m not ready for it. I knew that in a way I would probably never be totally ready to wean my last baby because it means closing a chapter on a very special and unique aspect of mothering. I really was not prepared for it to happen so soon or for this reason. That said, I feel confident in my decision. I know in my heart that if the adult Asher was talking to me right now he’d say, “Mom, I’ll be okay. Take care of yourself.” That doesn’t mean that I don’t still have tears streaming down my cheeks as I write this.
I will note though that it hasn’t been all bad. For 10.5 months Asher has almost always fallen asleep nursing. Whenever he is tired or hungry he makes a rather violent horizontal dive bomb for my chest to make his desires known. Since the weaning process has progressed, Asher has stopped diving to nurse when tired. He now cuddles his head against my shoulder, a move that he had previously reserved for Rich. Now, after I give him his sippy of milk before bed or naps, I stand up and hold him. He snuggles into me and I get to kiss his head and tell him how much I love him, before putting him down to sleep. It’s not the same as nursing him to sleep, but it is still loving and special, and I know that he feels cared for by his mom. I’ll take that.
That all got way longer than I’d planned. Sorry. According the MyLifeline.org, I’m supposed to try to end on an entertaining and uplifting note. Here, I like this. Enjoy.
As a final note, I cannot possibly post this without extending a very heartfelt thank you to the many mothers who fed my son when I could not. It was the greatest possible gift that we could have received at that time; making it easier to do something very difficult. I will never forget it.
I wanted to share this story that I came across today. It is from a mother who donated milk as a way to connect with, and honor the baby whom she lost (I do not know this woman, only her story). Donation is a beautiful and special gift from child-to-child and from mother-to-mother.by