It’s about time I got back into a blogging groove, no?
My daughter is eight weeks old today. She is a smiling, happy, strong little baby who started laughing out loud recently, charmed by the beguiling fishes hanging on her bouncy chair.
The past eights weeks have blurred together into chunks of time: the first few days, where we switched gears from high-risk pregnancy and complicated birth to being parents and getting to know our little girl, and attending to her medical needs. Then there were a few weeks where we adjusted to some feeding problems and started learning more and more from her and about her.
The past few weeks, we’ve had so much fun watching her grow more alert, smile at us, reach for things, and start to imitate us. And we’re taking longer, deeper breaths: she is doing well and minor health issues are improving; she is a good sleeper and great about letting us know what she needs; without forcing it, we all seem to have fallen into some semblance of routine.
It seems like each week presents a new normal, a realignment of expectations and possibilities. Now, I find myself negotiating the whole back-to-work scene (expect a full post on these issues later). Right now it is part-time, but maternity leave came and went too quickly. My expectations for what I can get done and how much I can extend myself change by the hour, but I am learning to roll with that. (Hey, a lifetime of illness getting in the way of work was good practice for this!)
Before I was pregnant with her, we talked a lot on this blog about parenting and chronic illness, and one fear so many people shared with me was what to do on the days when we are not able to care for ourselves, let alone infants/children. The discussion in the comments thread revealed that it takes a village. This is true for any family with a new baby, but so incredibly important for parents with chronic illness.
And I’ve had practice negotiating that change, too—being acutely sick with a newborn. Now, I had a few things working for me: I was sick, but not very sick (for me)—I knew things wouldn’t deteriorate enough to send me to the hospital, and the whole thing only lasted two weeks. Also, thus far, our baby has a really easy temperament: she rarely fusses (and if so, with good reason); she sleeps well, for an infant; and she is very adaptable. But for a variety of reasons, there was no one to help me.
So we took it one moment, one hour, one feeding at a time, until we’d made it through the end of another day. She did not get walks or much fresh air that week, she did not get the very best version of me as a mother, but she did get my very best each day.
There are a lot of acute illnesses and medical calamities going on with people close to me right now. The details are not mine to share but they speak to another adjustment—balancing being a new mother and putting my daughter’s needs first with helping with the emotional and physical needs of others. A lot of the time I feel pulled in many different directions, and just at a time when I have a young baby who needs me there are lots of other demands, too.
In the end, the same principles that make so much sense with chronic illness apply—with work, with care giving, with new roles and expectations, we take it day by day, and know that today’s normal might not work tomorrow. And with a happy, healthy baby, we have few complaints.
After ten years of living with cancer, I’ve gotten tough about adjusting to the losses, sacrifices, and consequences of the new normal.
I look at my illness as a job. Sometimes it is a part-time job, sometimes it is a full-time job. It is not a job of my choosing, so I have to budget how many other jobs of my choosing I can take on.
I have cancer. I have to earn money. Those are non-negotiable.
* Having a meaningful job? It’s a negotiable choice. Plenty of people live without one.
*Having time to spend helping ill family members? It’s a negotiable choice. I’ve got many critically and chronically ill members in my family. They could likely survive without my help. Their quality of life would be lessened and it would be very painful to watch, but plenty of ill people grope their way through life without the stellar caregiving I have chosen to provide to my loved ones.
*Having a child? It’s a negotiable choice. It’s a life-long commitment that necessitates everything else taking second chair. Period.
*Acting as a responsible civic member? It’s a negotiable choice. The world wouldn’t be in the pickle we find ourselves in if more of us acted as responsible civic members, but it is still a choice of mine to be involved or not.
I’ve become blunt in my acceptance that I cannot have all of these things. I cannot even mash together parts or pieces of all of these things. Who are we as a culture to have even created the phrase ‘Having it all’?
http://everythingchangesbook.com/
Great comments, Kairol (and lovely to “see” you!). I could not agree more–each of us have non-negotiables in our lives, and the rest we have to sort out and shift. For me, being the mother my daughter needs is the most important priority, and figuring out how to shift all the other roles around that is a work in progress.
OMG! Laurie…I never knew you had a daughter! So did I. She is almost 4 months. I went through hell and almost died twice after she was born due to several invasive abdominal surgeries which ended in a Total abdominal Hysterectomy. I formed abcesses, hematoma’s and seromas. I am currently blogging about the experience. So happy for you!!!
The most difficult part for me was not being able to give Hannah all of me, with a PIC line in my left arm and a JP drain in my abdomen. I couldn’t lift her, hold her for long because she would kick so hard. Seems at times as if my husband has taken both roles and I struggle with that. I want to bond with her, I want her to know “I AM MOMMY”. I beat myself up terribly due to how sick I was, 6 weeks straight in the hospital. 3 Abdominal surgies in a lil over 2 months. Numerous JP drains, horizontal incision, vertical incision, abscesses, gobs of adhesions and scar tissue. And I want so badly to hold my baby.
You’re right, we struggled for help when John was at work. I would be at home and could not be alone with Hannah due to so many restrictions, oxycodone, valium for pain and trying to take care of a newborn with all these apparatuses coming out of me. Nurses coming in to infuse me with restricted antibiotics, hemmoroids the size of texas, anal fissures, nearly passing out off the bed side commode. 3 blood transfusions. Bladder spasms during urination that would make me white as a ghost and shake from head to toe hesitating to urinate due to the pain. Pain that causes you to double over, pain that makes your nurse, family, friend cry as they watch in horror. I wish I was embellishing but this has been the most painful reality we have ever experienced as a family and only hope and pray every day I get better and better.
our story will blow your mind, I hope you find time to follow…it will truly awaken you to how poor our medical field is in some parts of this amazing country.
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