mothering, a tribute to the cause – (elizabeth)

This time of the year is all about honoring mothers. Over the next two weeks, we have International Bereaved Mothers Day (May 5), Birth Mother’s Day (May 11), Mother’s Day (May 12), and Step Mother’s Day (May 19). In recognition of this, we will be featuring a different post every day this week from a PAIL reader who has volunteered to share her thoughts about mothering. We hope you enjoy reading everyone’s posts this week! 

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Mothering as a Dragon Mom

When PAIL called for submissions on mothering a few weeks ago in honor of Mother’s Day, I signed up, not really knowing what I’d write about, but figuring I’d come up with something by the deadline. Now, here I sit the night before my post is due, and my thoughts are jumbled, my emotions are all over the place, and I’m tired. Really, really tired.

For those of you who aren’t regular readers of my blog, I am a mom of two beautiful children, Grayson (2 1/2) and Charlotte (3 months). While Charlotte is typically developing and healthy, Grayson suffers from Leighs Disease, a rare and fatal form of Mitochondrial Disease.

Grayson got very sick very quickly last week and we spent the majority of the week in the hospital. I am running on fumes today, desperately needing a day of rest and to take care of myself. But Grayson’s needs are constant, and he never gets a break from the disease and symptoms that are ravishing his body and stealing his future.

It’s taken months, but I’m finally realizing and admitting to myself that I am a Dragon Mom.

I read Emily Rapp’s NYT article months before Grayson’s diagnosis. If you haven’t read it, it’s beautiful and heart wrenching. And now that I’m living it, I can say that every word is true.

Rapp writes, How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?

I mother Grayson in the present. I never think about or look forward to him going to kindergarten, playing t-ball, or learning to drive. Because he won’t ever do those things. There are no goals for him and no expectations except to keep him happy and comfortable. There isn’t even any expectation of progress, because we are at a point where Grayson’s skills are going backward instead of forward.

The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss.

Before I had Grayson, my mothering goals were definitely performance driven. My kids were going to be well dressed, polite, social, smart, etc, etc. Grayson has taught me that while these things are wonderful (and yes, I still want all of them for Charlotte), they are nowhere near as important as ensuring a child feels loved, protected and worth fighting and sacrificing for. When I hold Grayson’s stiff body in my arms and make contact with his eyes that involuntarily shift back and forth, I’d like to think that he knows I’m just a little different than anyone else in his life; that I love him more fiercely than anyone else, because I’m his Mom.

I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today.

Motherhood has changed me. My mothering story so far is one of incredible highs and devastating lows. I’ve been forced to begin to prepare for the day where my firstborn won’t physically be with me on earth, although I don’t really think anyone can truly be prepared for such loss. But until then, I will love Grayson for who he is today. Because today, he’s here and he’s adorable, sweet, funny and because of him, I will celebrate my third Mother’s Day this week.

Elizabeth of Snips, Snails, and Puppy Dog Tales is a SAHM of two. A former teacher, she now spends her days figuring out how to best parent a healthy child along with a child with profound special needs.  She loves God, her amazing family and friends, and good Mexican food.

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featured post– “Laying it out there…” by E

Many of the posts we feature here on PAIL center around the cacophony of negative feelings that encircle IF and loss. In her recent post “Laying it all out there…“, E of Dreaming of Babies hits on three common emotions– guilt, despair and fear– with a twist:

I am crushed by the news that I will be having a hysterectomy at the time of baby girls birth. We did get a second opinion – and well, they have the same opinion; he would be “very worried” about this accreta as it looks “bad” – his treatment plan would be no different as it would likely be the only way to save my life.

E has one other daughter using an egg donor and a four-year history with IF and loss, and now she is dealing with a dangerous pregnancy condition. No one who has been dealt the IF and/or loss hand has escaped some measure of bad luck, but boy, some people really seem to get it layered on. Family planning is often warped and unrecognizable by the time IF is done with it, and many of us have our vision of our “finalized families” forever changed. It seems extra, well, shitty when it happens from a double whammy of both infertility and a rare pregnancy complication.

I am so, so worried that I will always be at least a little bit sad about this. I really wanted to have one more baby after this – or at least have the option to TRY to have one more. Am I going to always be sad on her birthday? viewing it as the day that one dream came true but another was destroyed?

Having to permanently lose one’s chance at ever experiencing another much-wanted pregnancy must be devastating, and even more so after such a long uphill battle. Please pop over to Dreaming of Babies and leave E a message of support or share your experience in response to her post “Laying it out there…” As always, comments will be closed here.

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E, in her own words: Enjoying being a mom to our beautiful little girl – brought to us courtesy of DE IVF after a diagnosis of POF. Now, with a surprise miracle pregnancy, we anxiously await the arrival of her baby sister. I’ve been struggling with where I fit in with the IF community until this recent diagnosis which will result in a hysterectomy when baby girl 2 is born.

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