Parents' perspective

Belle is almost four months adjusted, and yet she already has a history that weighs like years on her little shoulders.

...and on her parents' 😕

We were all taken on a roller-coaster ride in the NICU, but since being home, Kiera and I have found it (at times) really difficult to move on emotionally. We get overly concerned about Belle's health, and we can't help it. We get wound-up, and we feel like we're right back on that same roller-coaster again - the seats still warm, and with our old grooves in them. 

Sometimes we're sad, scared and overwhelmed. Then we feel guilty because we know that we should be rejoicing. "What's wrong with us?" we think. "Why can't we let go of this constant fear?"

We want to celebrate Arabella. We want to share her with our friends and family, but we're protective. We've been through a lot and feel too vulnerable to get back out there. Above all else, we want to save Belle from any future complications, so we lock our doors and feel bad about ourselves for doing so.

It's hard stepping out of the house no matter how many times we're encouraged by our family. It's hard inviting people over, and it's hard declining invitations from others. It's hard explaining our reasons to people who don't always fully understand. 

There's an immense desire for isolation. After reading about these types of 'parental reactions' in the past (in my preemie book), I finally get it now that we're home.

The struggle is definitely real. 

Let's take a look at what some other parents had to say about their own feelings and experiences. Maybe we can gain some insight from them. Here are three separate mini stories written by the parents themselves...

Like Wendy (mother to Ticia, a 28-weeker). Here's what she had to say about her precautions during cold and flu season:

Hi everyone, winter's come so early in our area that Ticia and I had to go under cover sooner than expected. I'd already planned to keep Ticia home until the chill is gone, but I was really convinced when our pediatrician warned us about the risk of RSV and bad respiratory problems. Here's my list of rules: no trips to the mall, no eating out, no visitors allowed at home, strict hand-washing and safe distance from Ticia for everyone who dares to come over (basically, only my mother-in-law and my sister. But not her kids!). Dear husband says I'm crazy. I'm not crazy yet, although I may go insane by the end of the season. I'm so lonely!

The isolation and anxiety can get so bad that some parents have mixed feelings about celebrating special occasions, because they don't feel like they're ready. This one is quite sad:

Dear L., today is your first birthday, but it doesn't look like a special day at our house. There are no balloons, no children with their parents coming in for a party. I'm writing you this birthday card for when you're grown, and you'll ask to see a picture of your first birthday. This morning, a year after you were born, I took you for a stroll in the park. People were looking at us, smiling. But if they knew that today was your first birthday, they would ask me: Why aren't you home making a party? Did you get him presents? A birthday cake? I'm afraid I don't have the strength to light that candle. Maybe next year, or the following one...Happy Birthday, I love you. Mommy

Parenthood can be absorbing and exclusive, shutting out the rest of the world for a while. Some parents of preemies, though, take that normal process too far. 

After the premature birth of our twin girls two years ago, my wife, Sarah, changed so much. Before, she had a great business and social life. "Boy, what a woman you found", my old friends would say. When Sarah got pregnant with twins, she decided to leave her partner in charge of the store for a year. More than two years have gone by now, and she's still home. All she wants to do, she says, is be with the girls. Her friends call me to find out why she's disappeared. She's become detached from everything - sometimes, I'm afraid, even from me. And tonight on the phone with my sister Judy, she freaked out. Judy called to tell her something about her baby, who's just three weeks old. I heard Sarah saying "How dare you complain about him? You're so ungrateful." Then she hung up. "Nobody understands how incredibly lucky they are," she cried angrily, holding back the tears.