Her lip is quivering. Tears are pooling in her eyes. I watch helplessly as my 4-year-old lies back on a table and submits completely to a medical process she clearly wants nothing at all to do with.
Her only act of resistance? The words that escape shakily from her mouth: “Mommy, please don’t let them.”
Never have I ever felt more helpless than I do in that moment. And the only thing that makes it worse is knowing we’ll have to do it all over again in three months.
And then three months after that. And three months after that. Potentially for the rest of her life.
The right to say no
One of the goals I had in raising a little girl was teaching her about body autonomy. I was never going to force her to hug anyone she didn’t want to hug. And I was going to make sure she knew she always had a right to say no to anything that has to do with her body.
I was going to raise her to know that she was in charge of that body. Only her. No one else.
But in May of 2017, my daughter was diagnosed with juvenile idiopathic arthritis. Prior to her diagnosis, she’d stopped being able to do very simple things, like open doors and climb up the stairs. Pain had become a part of her daily existence.
And as her mother, I’d had to go through four months of terror as everything from leukemia to multiple sclerosis was thrown out as a possibility for the symptoms she was experiencing. Finally, I had an answer for what was wrong with my little girl.
Almost immediately, we started on a treatment regimen that included me giving my daughter a shot of a chemo drug, methotrexate, once a week. She was also put on prednisone initially to help combat inflammation, and she takes a daily folic acid pill to diminish some of the side effects of the methotrexate.
I noticed a vast improvement in how she was feeling almost right away. And seeing that made giving her those shots worth it — even as I dreaded being the one to hurt her every time.
Fortunately, my little girl actually handled those shots like a champ. After a few weeks of tears, she started playing an active role in her treatment. Week to week, she’d help me draw the medication into the syringes, pick the bandage we’d use, and choose the shot location (arm, leg, or belly).
We became a team. And together, I knew we could handle anything.
Then came the day of her first blood draw.
A bundle of nerves
Because of some of the scarier potential side effects of methotrexate, my daughter also has to get blood work done every quarter for as long as she’s taking it. And for a 4-year-old, that’s a really scary thing.
Not only does having to lie back on the table make her feel extremely vulnerable, there’s a bigger build up — plus a much bigger needle than what she’s used to. It also doesn’t help that, when we were in the diagnosis stage, two different nurses struggled to find a vein, pricking her with the needle again and again. It’s no wonder she hates it now.
Whenever we go to the doctor these days (usually several times a month for various appointments), she asks if it’s a shot day. If I say yes, the anxiety starts building in her immediately. She’s a bundle of nerves as we walk in the door. And there’s absolutely nothing I can do to help soothe her.
To my daughter’s credit, she doesn’t fight it. She doesn’t kick or scream or try to get away. That lip starts quivering, those eyes fill with tears, but she does exactly as she’s asked. The trust she has in me, and her doctors, forces her to lie back even as she begs, “Mommy, please don’t let them.”
But I let them. I have to.
Trying to help her feel in control
I’ve been adamant about making my daughter feel empowered about the fact that she’s ultimately in charge of her own body. Forcing her to go against every instinct she has and lie back on that table for something she clearly doesn’t want? It’s devastating to me.
I have to work to remind myself (as well as her) that this is what needs to happen so that she can stay healthy and strong. That, as her mother, is part of my job, to continue to encourage her to do what needs to be done. The long-term consequences of not doing so will be so much worse than this short-term pain.
I can’t allow myself to be overwhelmed by the guilt and sadness that accompanies watching my child submit to something she hates. I have to be logical. But it doesn’t come easy. And I don’t feel good about it.
After our last, traumatic blood draw — during which she cried and clung to me for a solid 15 minutes afterward — I called our nurse coordinator and begged for solutions. I needed to feel like I was doing something, anything, to make this easier for her.
So, we came up with a plan: We scheduled our next blood draw for the same day as her next rheumatologist appointment. At the start of the appointment, we’re going to apply a numbing cream to her little arm — the kind that takes about 20 minutes to start working, but that should prevent the bigger needle from causing too much pain. Then, we’ll allow her to sit in my lap, facing me, instead of lying down on the table. Her nurse said that, as long as she doesn’t fight, I can hold her and they’ll do the blood draw that way.
There’s also a note in her chart about her veins being a little more difficult to find, so only the most experienced nurses will do her draws — and I’ll do my part by making sure she’s fully hydrated before each and every blood draw.
It’s not a perfect solution. Perfect would be her not having to go through any of this at all. But it’s something. It’s better. It’s a step we can take toward making some of this just a little bit easier.
And for now, as her mom, this is one way I can help make her feel empowered and in control of her own body.
Leah Campbell is a writer and editor living in Anchorage, Alaska. She’s a single mother by choice after a serendipitous series of events led to the adoption of her daughter. Leah is also the author of the book “Single Infertile Female” and has written extensively on the topics of infertility, adoption, and parenting. You can connect with Leah via Facebook, her website, and Twitter.