Text and image by Kylie Olean
This is the photo my daughter (13yo) took when I nursed my 4.5yo son for the last time.
One of the hardest parts of all this leukemia/chemo/hospitalization stuff has been its effect on my relationship with EJ. Obviously, it’s affected Alex as well, but there’s a big difference in how she can understand what’s been going on and how EJ has. Don’t get me wrong – in general, he’s been a trooper; however, it’s been rough on him.
From the time EJ was born, I made the decision and followed the rule that we’d wean when he was ready. I was assuming, based on my experience with Alex, that it’d be around two. Yeah, well, two came and went, as did three. And four. And at four years and 7+ months, he was still nursing at least to sleep, if not once or twice in addition each day.
Then I was diagnosed with leukemia. I was told that I’d be going into the hospital the day after Christmas and would be on super highly potent chemo. In fact, 10% of the people who go through that treatment die from the chemo itself. How’s that for scary? Obviously, I’d need to wean him before chemo – so EJ and I talked about it and he knew that Christmas would be the last time we did Mama milk.
And, as often happens, when plans are made, something inevitably happens. In my case, my white blood cells shot up and all of a sudden I was being admitted into the hospital five days earlier, before Christmas, with nothing ready. Again, scary. And heartbreaking.
A lovely lady had offered to do family portraits for us before I went in the hospital – and had agreed to do some nursing photos, as it was the end of this stage and it was going to be a rather abrupt end. And all of a sudden, I was being admitted and the photos weren’t going to happen and I didn’t have anything packed and the doctor wanted me on drugs right away and I needed to nurse EJ just once more. Everything was overwhelming – and mostly I just needed that closure. That relationship with EJ, 55+ months long, was a huge part of my life – and cancer was cutting it off against both our wills.
I convinced the doctor to hold off on the drugs until after my family had come – and I was able to nurse EJ one last time, this time in the hospital bed. Alex took a couple of photos – and I cried. A lot.
Over the next month, as I went through the chemo and recovery, I came to terms, to an extent, with this. EJ dealt as well as could be expected with my being in the hospital. And he seemed to understand that because I was in the hospital, Mama milk was done.
On Tuesday, I was discharged from the hospital – day 30. It was a surprise to me (I’d been expecting later in the week) and everyone. I got to surprise EJ, picking him up from school, and Alex who came into the TV room after getting home and shrieked to see me. And that night, EJ snuggled up to me in bed for the first time in a month. He was sweet and snuggly and then all of a sudden looked at me expectantly – because I was home again. Mama milk?
And my heart broke again – because I still have that poison in me. It makes it hard for me to eat anything. It makes me have the worst taste ever in my mouth. And between that poison, the month of not nursing, and the other medications I’m on to protect certain systems in my body, there’s still no nursing.
And on Wednesday night, the question was posed again – Mama milk?
And I know that if I hadn’t gone through all of this, if we hadn’t gone after the cancer aggressively, I’d be dead before either kid had a birthday this year. And being there for them is obviously the most important thing.
But one of the things I hate the most about this cancer – and the subsequent treatments – is how it stole this part of our relationship from us – how it forced all this crap on my four year old at the same time as it stole his main coping mechanism.
And now it’s Thursday night. This time I sent EJ up to bed on his own, to go to sleep without snuggling, waiting to snuggle with him until he was already asleep and less likely to ask for Mama milk. Chances are that tomorrow morning, as he’s waking up, he’ll do the same as he did this morning, trying to nurse in his sleep – and that’s heartbreaking enough. But as sad as the whole thing makes me (and it makes me cry every time I think about it still), it also fuels my hatred of the cancer, my determination, etc.
Sorry to anyone who read this whole long post – I’ve had some wonderful people message me about this subject, offering their emotional support. It’s an extremely personal topic for me – and one of the most important to how I’ve been dealing with the diagnosis and the treatment. I think, as well, it’s a big part of how EJ has dealt with everything. And moving forward, not only do we have to deal with the general life changes that this has all brought, but this significant change, as well – one that few others recognize.