This pains my heart to write this. I have always loved breast feeding and always will.
My breast feeding journey began with Florence 13 months ago, and it started off so well. I’ve always had ample milk, never struggled with latch issues or pain. I gladly fed her in public, was happy to nurse her to sleep. I love it all. And considering she was diagnosed with SMA 1 at 3.5 months, our breast feeding journey has been an extravagant gift. I cherished every. single. moment. Every feed, I gazed into her eyes, and she looked back at me with her eyes the color of a meadow at dusk, and we shared love. Deep, spiritual, meaningful love that only a mother and child can share.
And just like that, it ends. No more breastfeeding. It was 3 weeks ago today that I last breastfed her. I didn’t know it would be our last time. I can barely remember it, the experience muddled by the crackling in her chest, her fitful sleeping, the fear of going to the ER.
I want to comfort her. I want to nurse away her pain.
I want to feed her one more time. I WANT TO GIVE HER MY MILK. This is what my heart and body are screaming.
But I know I can’t.
I can pump and did for a while but my supply dropped. And its not the same. She used to breastfeed 4-5 times a day. The milk is sitting now, waiting, and slowly leaving me.
And all of the solid food I’ve picked out so carefully, the high calorie, ultra smooth and organic mixes I’ve spent time researching. No longer needed. The frozen homemade food I just made, sitting in useless cubes in the freezer.
She has a Jejunum tube hanging out her tummy now, and in 6 weeks it will hopefully be a Gastrostomy tube as well. It will be a smaller button rather than an external tube. I keep fearing I will accidentally rip it out of her.
We know this tube will probably make life easier. Although I didn’t mind feeding her, taking the time, changing her positions every few seconds, feeding her food in the tub. I will miss it all. And I wish I could have made the choice to let breast feeding go, I wish it wasn’t an emergency wean. I want to help her understand that it wasn’t my choice to stop.
Knowing a JG tube will decrease the likelihood of aspiration pneumonia brings me a lot of peace. Although it hasn’t been proven that she aspirates food, the tube is just another step in “managing” SMA. I am happy to have it in one sense, yet also reject the “it is more convenient” smiles.
So now, when we do go home, we will have a tube fed toddler, who once ate real food, drank her mama’s milk. The doctors will suggest no food or drink by mouth, say the tube is forever. But I disagree. I have to, yet again, believe for more. I was not ready for a tube months ago. Never. I couldn’t. But grace has come into this hard place and kneaded out the knots of fear.
Be thankful for the 13 months of breastfeeding and bonding.
Let it go again.
Grieve the loss of it, but don’t be destroyed by it.
And I say to my heart, God is still good.
Thank you to my friend Morag Hastings of Apple Blossom Families for generously offering to shoot a breast-feeding session for us. I will cherish these pictures. They make me cry now, because that season is over, but I’m thankful I have these pictures so I don’t forget what a beautiful gift it was to nurse my Florence Marigold.