Today, I take a moment not to curse and mourn my daughter’s bizzare blood disorder called DBA. Today, I take a moment to be thankful for it, and for the fact that my daughter has required blood transfusions since infancy to stay alive.
1) Everything is more precious. You know the saying, you don’t know what you have ’til it’s gone? Well, we are human. We take things (and people) for granted. Even children.
DBA means that there’s absolutely nothing guaranteed about tomorrow. Every couple weeks, I get an unmistakable reminder of that fact. One minute we will be sitting down to a routine ol’ family dinner, and the next, I’m calling the emergency on-call line at the Children’s Hospital Center for Cancer and Blood Disorders… a name which inspires terror into the most stalwart parent’s heart. (You know, I think it should be renamed. I vote: the Children’s Hospital Center of Ultimate Love and Support.) With so many complications to DBA, I am acutely aware of the precariousness of my child’s presence in my life.
So I can’t help it. Every time we go to the creek, I snap a picture of our adventure, because a little voice in my head will suddenly pipe up that it might be our last. Every time she wants to dance, I dance, at least a little. When she asks me to sing, I sing, even if strangers are walking by. And darn it if I don’t have a huge, under-bed Tupperware full of nearly every scribbling (even on napkins and menus), dabbling of paint (on ceramic, canvas, and paper) and toilet-paper-roll dragon we’ve ever created. I just can’t throw the damn things out. And truth is, I need to upsize or get another container soon.
2) I’m a better mom than I ever would have been. Now don’t get me wrong: I probably would have been a pretty great mom anyway. But, if being a better mom means being more patient, present, and nurturing, then I have DBA to thank.
Patience: I am more patient with my DBA daughter than I ever imagined possible for me. I am kinder. More compassionate. More understanding. More supportive. Gentler in my reprimands. Calmer when she throws a tantrum and gentler when she finds her way out of it. Now, I’m not perfect. But I’m capable of vastly greater patience than anything I could have imagined.
Nurturing: During Adahlia’s first 18 months, I was a breastfeeding champion. I worked my poor breasts until aching exhaustion (sometimes forcing myself to wake up to pump twice a night) to restore my milk supply after it nearly dried up because she was too weak to nurse, and I was too sick to make much milk. In the end, I managed to breastfeed her for over three years, making me something of an expert on restoring and increasing milk supply. I still co-sleep with her, because, of course, it makes sense that a vulnerable child is terrified to sleep on her own. (I know plenty of adults who are terrified to go to sleep on their own and wake up spooked of the dark. So why do we expect children to sleep alone?)
Presence: I have spent more time with my daughter than I ever would have if she’d been healthy. If she’d not had DBA, I would’ve gone back to finish my doctorate 2.5 months after her birth and opened a clinic, which would have been great, but which would have also translated to more time distracted by (and focused on) things other than her, and the simple enjoyment of our time together. I don’t regret a second of my time spent with my daughter. I can finish my doctorate and start a clinic anytime in the next five years. I cannot spend time with my daughter as an infant ever again.
And it’s more than physical presence: when I’m with my daughter, I make a concerted effort to be mentally, intellectually, emotionally, and spiritually present, not just physically there. I don’t talk on the phone a lot or go on lots of playdates where I spend more time talking to the other mom than playing with her. I try to ignore my emails and texts and messages and the Internet and Twitter and Facebook and yes, even this webpage.
I engage with her. I try to get her involved with cooking or organizing or whatever my chores are for the day. I read and play. I do my best to explain things from multiple perspectives or admit that “life is strange and I don’t know,” instead of giving a brisk and easy answer, as if I’m some sort of authority on this baffling planet, like: “because I said so.” Because of DBA, I have had to explain very tough things, like why I keep taking her to the hospital to let people hurt her, so I know (hope) someday I’ll talk with her openly about sex and drugs, the allure of danger, the illusion of safety, and what it really means to be safe and secure and free in this world.
DBA demanded that I re-arrange my priorities. It forced my high-achieving, ambitious, and fear-of-failure self to stop being high-powered and slow the heck down, despite the fact that our economy pretty much requires two breadwinners for all except the wealthiest couples. (That’s something that needs changed. Women should be economically free to raise their own babies if they want to, not be forced to hand them to a stranger for their most formative and vulnerable years.)
If it weren’t for DBA, being a mother would have meant that I’d become a one-woman balancing act. I’m sure I would have done a good job, and it wouldn’t have destroyed my daughter. But, because of DBA, being a mother means I am all about my daughter. Period. I wouldn’t have done it myself. DBA forced me to do it. For that, I’m eternally grateful.
3) DBA is challenging me to grow stronger than I’ve ever been.
Now, I’m not there yet. I’m still working on regaining strength, especially physical and energetic strength. But soon, I’m going to be stronger than I’ve ever been, and I owe a lot of thanks to DBA.
DBA has helped me get in touch with what it means to be a Mama Bear. To stand up for myself and my daughter. To get what we really need, instead of what other people think we need. It is not actually something I was conditioned to do well.
Not that my little bear isn’t tough. In many ways, she can handle herself. But, like a mama bear, if folks dare to step between us, or threaten her in any way (physical, emotional, or psychospiritual), they are confronted with the likes of which they’ve only dreamed out… and then woken up with pee-pee on their sheets.
Truth is, I am ruthless when it comes to my daughter. And I don’t feel bad about it. In fact, I usually laugh about it.
4) Because of DBA, my relationship with my partner (her father) has been pushed, cracked, shaken, sledge-hammered, shredded, and otherwise thrown into the fire. What has been forged is true. The process has taught me more about self-love, love for other, partnership, and co-evolution than I could have ever imagined. This can’t be measured. It is invaluable. And it can’t be obtained if you don’t go through the crucible. Again, I’m eternally grateful.
5) DBA has forced me to internalize the important things, the things I believe we come to this planet to learn.
Things like what it means to live in peace and acceptance of yourself and the other, without letting the other destroy you, or feeling like you need to destroy yourself.
That I am creating my own legacy of love, and that with fearless dedication to honesty, kindness, and hard work, I can break free of ancestral patterns, and make my legacy of love grander than anything I knew or can imagine.
That unaware, I have no say in how I spend my energy. It is spent according to the drives and pulls of my conditioning, unconscious beliefs, programming, emotions, et cetera. Aware, I have more choice over how to spend my energy and time. I’d rather spend it in the present moment, in love and creation, with my child who may not be here tomorrow, than in bitterness, resentment, gossip, drama, and worry.
That people come and go. I come and go. Understanding changes enemies to friends, and the lack of it changes friends to enemies. Separation isn’t bad. It’s healthy. It’s a season, like winter. It can be survived.
And that someday, I will be physically separated from my daughter, the little spirit who has taught me and awed me with so much. And yet, since separation is never the end of the story, and all things are circular, I know I will meet her again.
I will try to make our inevitable separation be a long, long, time from now. But if it happens sooner than I’d like, because of cursed DBA, I’ll have DBA to thank for the fact that it was so incredibly sweet.