It all comes full circle (or why I have stopped wanting to smack people who say “everything happens for a reason.”)

Human milk has become part of my daily life. That's a weird thing to say for someone who isn't a baby, a toddler, a lactation consultant, or in the process of lactating. And yet, it's true. It's also true for all of the people who work for milk banks across the world, and it's true for the people who serve on the Board of Directors for those milk banks.

A few years ago, my freezer was full of frozen milk. My own milk for a while, and then a combination of my milk and donor milk, and then almost only donor milk (even though I stubbornly refused to stop pumping for months and months with little gain).

We were in the thick of it, then, trying to keep Ike-a-saurus alive everyday. That sounds hyperbolic, but really it's not. Between the suctioning of his airway, making sure he wasn't aspirating, administering critical medications, etc. the house was turned into a respiratory wing of a hospital. So, at that time, when someone would offer a sympathetic smile and say, "everything happens for a reason," I wanted to go ballistic. I wanted to scream and shout "How can THIS be for a reason?! How can living on no sleep and constant worry, and medications that cost more than rocket fuel, and hours of writing letters of medical necessity for items and medications and Simply Thick and donor milk (letters that should have just said "DUH") – HOW could any of that be for a reason? How can it be "for a reason" that I can only pump two ounces of milk every three hours? How can it be "for a reason" that my baby can no longer breastfeed because he could aspirate on my milk and get a life-threatening lung infection? What reason would that be? What reason would make it OK for a child to be critically ill; for a child to be under the constant threat of being felled by the twists and turns of anatomy and germs and what else? Fate?

No reasons make that OK. Everything does not happen for a reason. Sometimes bad things happen, and those bad things happen to your own family and there is no rhyme or reason to it. It is what it is, and so you react, and you plow through it, and you live minute-by-minute until all of a sudden for one reason or another you don't have to live that way anymore.

That's what I wanted to say every time I was met with a platitude. Not because I was angry at the person grappling for words of support, but because I was angry at the situation. I was sad. I felt weirdly guilty. And it took nearly every ounce of everything in my body and mind to grasp onto little threads of hope that one day I wouldn't have to be angry or sad anymore. Not because I would discover the "reason" why things had gone terribly wrong, but because the terribly wrong things would have stopped happening.

Now, fast forward several years and here we are. Ike-a-saurus is no longer tethered to tubes and non-stop medication. He ate two hot dogs for lunch today and rode his bike wearing only underpants until I caught him and forced him inside on a quest for jeans.

And now, rather than travel weekly to the milk bank to pick up donor milk to thicken and fortify and feed to my refluxing, trached baby, I go to visit milk bank staff who have become family friends. I go so Ike-a-saurus can give everyone the rundown on what pre-school is like. I go to meet with researchers and media. I go because I am now on the Board of Directors.

Today, while I was up at the milk bank, I was asked by a researcher to explain what my goals are for being on the Board. What do I hope to achieve? My first thought was completely selfish. I am just so happy that my experience with the milk bank is no longer because I am desperate for their help, everything else that I might want or feel slips away momentarily. But once I acknowledge that I am so lucky and grateful to be at this end of the spectrum, I do have goals and hopes and desires for my work on the Board.

I want to help people understand what a milk bank is and what it does. I want to help distinguish the differences between donating your milk to a milk bank versus informally sharing your milk. I want to reach out to families with infants in the NICU and to families with medically fragile babies and say, "Hey! Look what we have for you! Life-saving nourishment for your baby!" I want to offer empathy to mothers who feel that they should be the ones feeding their baby their own milk, even when the universe and their bodies conspire against them. I want to offer sound research and evidence to insurance companies that YES human donor milk is medically necessary and YES it should be fully covered. I want people to understand how easy it is to donate milk, and how easy it is to donate money, too. I want to help add exponentially more milk donors every year. I want every sick baby, every fragile toddler to benefit from human donor milk the way Ike-a-saurus did.

There are so many things I want to say and do as someone who is fully committed to the mission of human milk banking, and one of those things is to admit that while I still don't think it's fair to say that everything happens for a reason, I am glad to have found a purpose that might not have been uncovered if it hadn't been for everything my family experienced just a few years ago.

There were so many days when I couldn't wait to be done with cracking open those milk bank bottles, dumping their contents into a huge container, filling the container with thickener and fortifier and creating a "milkshake" that would likely be barfed all over my clothes, my child's clothes, a variety of medical devices, and into a trach. I didn't want to have to have to go to the milk bank every week. I didn't want to have to depend on other women to provide sustenance to keep my child alive and healthy. I didn't want to have to feel helpless and scared and like a person always playing defense, never offense.

But now that Ike-a-saurus has outgrown the milk bank, I feel like my journey with them is just beginning. Sometimes it takes newfound knowledge and perspective to show you something that's already in your lap. From donating milk to receiving milk to accepting charitable care to being on the Board, my experience with the milk bank has run the gamut. And sharing that experience, reaching into it to find ways to help others, is something I want to do. I feel fortunate to be able to assist the milk bank in any way I can – because that assistance is spread to hospitals and mothers and families and most importantly, the babies themselves.

Everything might not happen for a reason, but it's nice when you can give a meaningful reason for something you are trying to make happen. You know what I mean?

So that is the reason human milk has become part of my daily life. And no matter what the path was to get me here, I'm so glad this is where I've found myself. 

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