To the Mother Whose Child Is Hurting

To the mother whose child is hurting — I have never been in your position.

But I have been in your child’s.

And I want to say what I wasn’t able to as a child: thank you.

Thank you for taking me to appointments and tests and treatments, even when I get upset about having to go. Thank you for continuing to schedule them when you would rather take me to the park and give me the most perfect, comfortable childhood.

Thank you for taking the time to pick up the medication I hate at the pharmacy. And thank you for doing the hard work of making me take it, even when all I see is the awful taste and annoying side effects.

Thank you for holding my hand and watching me cry when I get poked. Those blood draws and IV starts are difficult for you, too. Thank you for having the foreknowledge to know that the important information drawn from those labs, and the life-giving medication running through those IV’s are worth gritting your teeth and holding me down when every ounce of you just wants to embrace me and take away all pain.

Thank you for being my very best advocate even when it might make you look overbearing. Those momma bear moments may embarrass me now, but one day I will see they come from the very depth of love and concern for me.

Thank you for letting me lead the most “normal” life possible, even when it takes a lot of work on your part to keep it flowing. Thank you for letting me play sports, and go to sleepovers and on class trips, even when you have to teach someone the extensive ways you care for me on a daily basis that typically go unnoticed. And thank you for pretending that you are OK with me being away, even when you are the best expert at knowing exactly when I need to slow down, or seek medical attention.

Thank you for waking up every day and doing the hard work of being mom, even when you are emotionally and physically drained and exhausted. Thank you for dealing with the mess of hospital parking garages, office policies and insurance hoops. I will likely never realize how much you are doing to keep my tiny self well managed.

But I will remember you were there. I will remember your presence beside me for all of the hard stuff. I will remember the awful plastic chair you occupied when I was in the hospital. I will remember the plentiful Phase 10 wins and losses acquired during my long infusions. I will remember singing with you to the music that you let me pick out on the way to my appointments that were cities over because you wanted me to have the best care-team available. I will remember you walking with me all the way across the hospital just to get my favorite cookies. I will remember the time you spent loitering the hospital gift shop with me because I “just wanted to look” when there were plenty of more efficient ways you could have spent your time. And every time I look at my still best stuffed friend you got me for my first hard test, I will remember you loved me enough to do the hardest kind of caring.

The kind of caring that taught me you can have fun even with the hard stuff. That there are reasons to smile amidst the deepest pain. And that it is OK to not smile, it is OK to cry. It is OK to verbalize the frustration and pain and sadness. It is OK to ask God, “why.” Because we cannot expect an answer to a question we never ask. And an essential part of healing is working through both emotional and physical hurt.

You taught me that while my illness is a part of me, it does not define me. Rather, it lets me be the best me possible. The me that no one else could ever be. You taught me how to grow from the pain, rather than despise it. You taught me that life is not about having a perfect and easy and comfortable existence; life is about seeing the beauty and transformation available in the hard work of mundane and difficult circumstances.

I do not and will not ever understand how difficult it was, and is, for you to see me sick and hurting. But I do realize it is likely more difficult for you than it is for me. I realize while I maintain an ounce of control, you feel like you have none. I realize when all you want to do is take it away, even at your own expense, you are powerless to do so. I realize you desperately want me to have the most comfortable and “normal” life possible. But you are giving me something far greater than normalcy and comfort. You are allowing me to see that through your difficulty, you are forging the most brilliant strength. You continue to teach me that my difficulty presents the very same opportunity for beauty and transformation.

Thank you, momma bear. I am wildly grateful for you.

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