Remicade Dream

I learned about a new blog today, written by a woman with RA who is contemplating becoming a mother and is eager to connect with other women who have been through this.  It’s called “RA (maybe) Mamma” – I’m also going to add it to my links on the right side of the page.  (Thanks to RA Superbitch, one of my favorite bloggers, for bringing this blog to my attention!)

Oh, there’s just so much I want to say about this subject!  I haven’t talked that much about being an RA Mamma, mostly because I wanted to focus on my musician-self when I started this blog.  But so much of my RA journey has been entwined with my motherhood journey.  I haven’t written my onset story yet – saving it for the time when it feels right – but I was diagnosed with RA the same week I learned that I was pregnant with my son, who is now two years old.  So I have been learning how to be a mother and a person with RA at the same time.

Unfortunately, I’m going through a difficult low-energy patch these days, and can’t give this subject the attention it truly deserves.  So, for now, I’m just going to cut-and-paste in an essay I wrote for a class when my baby was four months old.  I don’t mention RA in this essay – partly because I’m very private about it, and partly because I was still struggling with deep denial at that point.  There’s a brief allusion to “medical issues” - I’m talking about the RA there, and needing to start RA meds.  Anyway, I figure you can read this essay and filter it through the lens of knowing I am a mom with RA. 

I hope to be able to write more about this soon - it’s a subject close to my heart, especially since I am contemplating having a second child.

So here’s the essay:

Perfectly Imperfect

On December 2, 2007, at 1:18 AM, two people were born in the same hospital room.  One of these people was a baby boy named Christopher.  The second person was someone called “Mom.”

Even though I had spent almost nine months preparing for the birth of that first person, I don’t think anything could have truly prepared me for the birth of the second. Over the past four months, I have watched myself struggle to integrate my old self, someone I have known for years, with “Mom,” who often surprises me with her thoughts, feelings, and actions.  Before I had my baby, I had many ideas in my head about what it meant to be a mother, and about what kind of mother I expected to be.  As it turns out, some of these were accurate – I play the piano for my child, laugh and play with him often, and love him as wholeheartedly as I ever expected.  Other things, though, have surprised me.

I expected that movie-moment in the hospital – after hours of sweaty labor and pushing, coached along by nurses and my husband, I would hear the baby’s cry and see his first squirming moments. The doctor would put him into my arms and I would burst into tears, my heart full of instant love for this little person.  Childbirth classes had prepared me for something earthy, painful, but rewarding. Instead, the day arrived two weeks early due to an unexpected pregnancy complication, and all my preparation and ideas about the birth went out the window. There were no contractions, no water breaking, no labor, no pushing – just consultations with specialists and the news that my baby should be delivered as soon as possible.  I never used the iPod that I had loaded carefully with my favorite music, or any of the “comfort items” I had planned to use during labor; I barely got my suitcase packed with the essentials. Christopher came into the world in a scary, brightly-lit operating room, via C-section.  I was wide awake and terrified, numbed from the chest down, and there was a sheet hanging mid-torso, so I couldn’t see anything that was happening.  I heard the nurse exclaim, “Look at all that hair!” and I heard the baby’s first cry. After what seemed like an eternity, my husband came over with the baby in his arms and showed him to me.  I couldn’t hold him since my arms weren’t working yet, and I could barely comprehend that this was my baby.  Then he was taken away from me.  I was wheeled to the recovery area and put on a morphine drip, and I spent the next few hours in a narcotic-induced fog, wondering where the baby was.  Over the next few days in the hospital, still heavily drugged and in lots of pain anyway, I struggled to get to know my baby.  I was frequently confused about who he was; he bore a striking resemblance to my younger sister at birth and even had the same name, Chris. I repeatedly referred to the baby as “she.”  Not exactly the start I had envisioned for us…

At home, I had to stay in bed to recover from the surgery, and I watched, feeling helpless, as my husband and my mother cared for my son.  I felt completely useless as a mother and sometimes felt disconnected from the baby in a way that disturbed me.  The only job I could really do was breastfeed him, and that wasn’t going well at all.  He had developed jaundice and was sleeping all the time and refusing to eat.  He lost a lot of weight and his blood tests didn’t look good, so we went back to the hospital a few days later for UV light treatment.  My mother and husband both suggested that I stay home, but to me, it was absolutely unthinkable.  I think it was that night that I truly became a mother.  My husband and I shared a fold-out chair meant for one person, while our baby slept next to us in an incubator under bright purple lights.  I cried when I saw the IV needle in his little leg.  I was nauseated and weak myself and could barely walk, and I knew that the sensible thing would have been to go home and get the sleep I needed. Instead I stayed all night, rejoicing in the morning when his blood tests came back improved.  In the end, we all survived the experience, and that terrible night brought home to me just how much I loved this little stranger, and how much I would sacrifice for him.     

On a hot July day two summers ago, my now-husband knelt down in front of me, pulled a beautiful diamond ring out of his pocket, and asked me to be his wife “through the perfect and the imperfect.”  He said this because he knew that we both suffered from strong perfectionist streaks.  Growing up, if I got a 99 on an assignment, I wanted to know where the missing point had gone.  Becoming a musician only enhanced this tendency, since so much of our time is spent going over fine details in a practice room, trying to create something of perfect beauty.  In an otherwise-good recital, I would find the mistakes and agonize over them.  My husband knew this about me, and about himself (although in different ways), and with those simple words, he created a space for me in which I didn’t have to be perfect to be perfectly loved.

I am an imperfect mother.  Sometimes I do a great job of multitasking, but there are plenty of days when taking care of the baby is all I get done, while housework and schoolwork pile up around me.  There are other days when I get the other things done and feel that I have given the baby short shrift.  Sometimes I watch too much TV when I am home alone with him.  Some days I forget to get his bottles ready ahead of time and have to scramble while he screams for food.  Once an old lady scolded me in the mall because my baby wasn’t wearing a sweater or socks.  (Okay, so it was eighty degrees out, but still…)  I have had people, once someone who wasn’t even a mother, demand to know what is in the bottle I’m feeding my baby, then lecture me about how evil formula is.  This one really hurt; I was forced by a medical issue to stop breastfeeding my baby after only three months, and I was completely taken off guard by the depth and intensity of my grief over this loss.  (My baby, on the other hand, was fine – happy, healthy, and thriving, he took to the bottle immediately and never seemed to suffer.)  When I look in the mirror, I see the extra pounds I have yet to shed, the stretch marks on my untoned belly, the scar from the C-section.  I have become one of those annoying moms who takes a million pictures of her child and talks about him constantly.  I have temporarily lost whole chunks of my personality and former interests, and have become someone who will talk in great depth and detail about baby poop with my mom, my husband, and anyone else who will listen.

Yet amid all of this imperfection, I am deeply, intensely happy.  I have watched my husband morph easily and naturally into an amazing, devoted, loving father. I have found a new fierceness in myself when I have advocated for my son’s health care.  I have become more proactive and, in spite of being scatterbrained and forgetful, have become more organized in subtle ways.  And most important of all, I am slowly learning to let go of my lifelong desire for perfection.  Instead, I savor the little joys that come every day.  Although I may not do everything (or even most things) perfectly, when my child sees my face, he lights up and smiles a smile of pure delight, and I know that one way or another, I am the perfect mother for him.