Mothering As A Dragon Mom

This post was written for PAIL’s feature this week- Mothering: A Tribute to the Cause.

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.

Advertisements

13 thoughts on “Mothering As A Dragon Mom

  1. What a beautiful post and sentiments. Brought tears to my eyes. I GUARENTEE G knows you, he knows of your fierce love and his connection to you is beautiful. Please don't wonder that he knows you are you, I've seen it numerous times over the last 2 1/2 years and even last week when feeling terrible the nurse comforted him with the words, "you are ok, Mommy is right here" and that's always the truth. Happy Mother's Day dear friend, shall it be as special as you are! Xoxoxo

  2. I love you… I have thought you were amazing since the first time I met you. Back then I knew you were a dragon mom, even before there was a "dragon mom". I came home and read the very beginnings of your blog. I cried and cried… I saw how fiercely you dreamed of being a mom and knowing that you would lose Grayson so young killed me. Grayson is so amazing, I have seen Matt lose many skills but nothing compared to what Grayson has lost. It is devastating.. You are an amazing mom, I don't believe for a second that Grayson doesn't know it is you when you are holding him. I hope and believe with everything I am that Grayson knows, and never doubts how fiercely you love him. I wish there was some magic pill to change things, and I am so very sorry that there isn't. I think and pray for you guys often.

  3. It took me about 8 attempts to get through this post due to my emotional response. My greatest, most heart-wrenching fear is your daily reality. I think of your family so often and frequently use it as a reminder to appreciate every day. You have inspired me forever.

  4. I'm back from a bit of a blog reading hiatus and was so happy to read this and hear about your healthy baby girl but so sad to hear that Grayson is not doing as well. I will continue to keep you and your family in my thoughts and prayers. Hugs, Jeannine

  5. You are one amazing mother and I am so greatful that you will celebrate your 3rd mother's day this weekend. Grayson knows you like no other person in his world… Happy Mother's Day sweet friend…hugs and prayers for many more.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s