Preemie Parent Remembrances

I know. I know. My commitment to blogging lately has been stellar…

During a debacle yesterday concerning our brick, I noted that it’s a good thing we experienced the stress of the NICU before we took on house-building, just to keep things in perspective. I was joking, but not really.

I recently received an email from another preemie mama who requested I share a link to her blog post, which is about the remembrances of preemie parents in honor of World Prematurity Day. I always enjoy the shared experiences that families with preemies have. Those first years of Preemiehood certainly bind us together.

So, if you’re interested, here’s the link.

The Phoenix

© fotographic1980/FreeDigitalPhotos.net

© fotographic1980/FreeDigitalPhotos.net

When J was born, I lost the girl I was.

The weight of the world was on our shoulders.

It’s sad to think about the very moment you lost energy, freedom, and naiveté to be replaced by responsibility and fear and exhaustion. That pivotal moment marked my entry into true adulthood, where every battle was about the life of someone else that represented the ultimate responsibility.

M brought me healing in so many ways. I let go of some of my grief and anger, because there was no room for it any more. In her dramatic fashion, she showed me that all my questions about J’s delivery were pointless. I couldn’t have gone to the hospital earlier or asked more questions or rested more or walked less and carried him full term. The current of a preterm delivery was going to carry J and me to that operating room, and no amount of questioning after the fact would change that fact. Besides, with M I could have died. And she could have died. So, as if I didn’t learn the lesson well enough the first time, life itself became so beautiful.

One of my favorite bloggers Beth Woolsey just wrote a piece about the process of rising from the ashes, and it dawned on me that the phoenix is the perfect way to describe the way I feel about being a Preemie Mama. I will never be the same. Life will never look the same. But, I was remade better than I was before. More fierce. More determined. More grateful. More flexible. More sympathetic. More patient. More purposeful. More flexible. And most of all, more resilient.

My favorite part of what Beth said is that it’s our job as the survivors, as the remade people, to reach our hands back into the fire for those coming behind us. And I can’t think of a better explanation of what this blog is for me.

If you’d like to read her entire post, here it is at bethwoolsey.com.

 

Not-Jane

Having preemies affords some unique life experiences.

Like being friends with quadruplets.

I met my friend Not-Jane* in our Parents’ Reaching Out meetings at the NICU. After J’s birth, I was in desperate need of a support group. I was lost in the unknown, and the group of women I met in those meetings were the first people to validate my feelings. I am still in touch with a few of them.

I saw Not-Jane at the first meeting I attended. She was slim, and I had absolutely no clue she had multiples until she introduced herself. It turned out that J was only two days older than her four babies and that he was about a week more premature. I liked Not-Jane almost from the beginning, and I was curious about her experience of having four babies. After six weeks of passing each other in the NICU corridors, we became friends.

Not-Jane was a bright spot during long days, and I looked forward to daily check-ins with her. I remember huddling next to J’s bassinet, lost in frustrating thoughts, and seeing her walk through the doorway. We shared information and a little NICU gossip, and some of my clouds began to lift. Her friendship provided a sense of normalcy in a situation so outside the norm.

After J was discharged, I visited her at the Ronald McDonald house until the last of her babies was transferred to the NICU in her hometown. Then, I drove an hour and a half from my house to hers about once a month. It was RSV season, so we didn’t take our babies into public, for anything. Visiting her was respite from a very lonely winter.

I’ll never forget watching her juggle those babies. She lined up Boppies and marked bottles and organized a system to meet her babies’ needs. J was a very difficult baby during his first year, but seeing her conquer chaos was a reminder to me that my problems were temporary and could be overcome.

We celebrated surviving that winter with our first March of Dimes walk in April. We did it with other families we’d known in the NICU, and I was the only mother there who didn’t have multiples. With us were a set of twins, triplets, and quads. I was amused at all the double-takes and questions, because I could watch from the sidelines. No one noticed my singleton.

Every public outing for Not-Jane came at a price. People asked the most intrusive questions, like whether she had used fertility treatments to get pregnant. (When did that become an acceptable question for strangers to ask other strangers?) During our trips to the zoo, streams of people would stop us and ask if her babies were quads, and most of the comments were repetitive: “I don’t know how you do it!” and “I couldn’t have four babies!” and “They’re ALL yours?” Not-Jane had apparently heard the same things over and over at restaurants and grocery stores and everywhere in between because she appeared unfazed, but one time she leaned toward me and said, “What is my choice? I’m not going to stop going places because I have four babies.” I always admired that attitude, that her kids shouldn’t be punished because they were multiples, and as a result, her kids were excellent in public, even with people staring at them.

My favorite comment was when J was still a baby, and all five of our babies were lined in a row. Someone said, “You have FIVE BABIES!” Not-Jane replied, “Yes, we have quints,” and we laughed. We often met for lunch in the city. One time we streamed into a restaurant with our toddlers, who still looked like babies, and we occupied every high chair the place owned. I looked around the table at all those kids in all those high chairs, and I heard Jane’s voice saying, “We are the lucky ones.” I wanted to proclaim to the rest of the diners in the restaurant our success story, all the statistics these children had beaten.

And then I added M to our preemie brood, and Not-Jane mourned the fact that I’d missed out on another full-term pregnancy. I didn’t have to explain it. I knew she understood. She was one of the first people I told that I didn’t feel like I was done having kids, even though I’m done having babies. I knew she would understand that too.

Over the last year, circumstances have made our get-togethers more rare, and now I have moved five hours away. But, Not-Jane held my babies before most of their families did. She was one of three people I texted that I was being hospitalized with preeclampsia with M. I remember her kids as they were in the NICU, what each one of them looked like, and I can tell you most of the challenges her kids have overcome.

Some people sweep into your life at just the right moment. They laugh with you, worry with you, and cry with you. And no matter where they go in life, you feel a connection. With so many little people to consider, we seldom see each other, and when we are together, our conversations are punctuated with the chatter of six other voices. But, I am always glad to see Not-Jane, and I can hardly remember all my NICU firsts without thinking of her.

*Clearly, Not-Jane is not her real name. I’d like to protect her privacy, since she doesn’t go blogging all over the Internet like me. One of my favorite bloggers Beth Woolsey gives pseudonyms in this form, and it always makes me smile.

From Afar

In some ways, I get tired of all the repercussions of the Internet and smart phones and people always being so distracted by technology. I guess in some ways I am a Luddite. I think we should get more fresh air. I think we should have less distractions. I think we should have boundaries that protect family time from the encroaching working world.

But, I cannot imagine having preemies without the support of other Preemie Mamas. This has been a lonely four years. The loneliest of my life. It’s the nature of having small children. It’s what happens when you have a baby who can’t go into public. Just the schlepping into and out of the hospital for five months isolates you because your heart and soul remain trapped in that NICU with the baby you leave behind everyday. It’s just so lonely.

I’ve emailed and shared Facebook messages. I’ve blogged and read blogs. I’ve texted some of my worst fears to friends I’ve never even seen in real life. And without that support, where would I be?

It gives me such great joy to share my experiences with other parents in similar circumstances. I need to feel needed. I need to feel that I’m reaching a virtual hand out to other families like mine. Sometimes, this part of my life is so dominant that I wonder how it won’t always define me. How will I leave this all behind? It seems so consuming to be something in my past to which I casually refer when someone asks me at a consignment sale what size baby clothes to buy (like I have any clue).

I run errands. I pass people I don’t know. I shuttle kids to and fro. I smile and make polite conversation, all while I carry this baggage. We all have baggage, so I don’t mean it as a complaint. This baggage is mine, and I wouldn’t trade it for someone else’s. It’s just that when I feel so disconnected in my day-to-day life in a place that has never felt like home, I find a home among people I’ve never met in real life. They have been friends to me when I’ve been in a black hole. And this is the beauty of technology, of blogging and texting and Facebooking. With everything humans touch, there is good and bad, and for me the good of technology has been forming communities with people who share my experiences. Less than 1% of women in this country have experiences that mirror mine. I would never connect with this preemie parent community without the benefit of technology.

So, this morning, after a series of Facebook messages with another Preemie Mama that both broke my heart and made it whole again, I am thankful for all the women who have supported me. From afar.