The Parenting Imposter – What I Did for Love

I’m not positive, but, to me, it feels like every other parent has their act together. They really seem to know what they are doing and do it with confidence and without question. I never have. That was never more apparent, or more understandable, than with the birth of our first child.

My oldest son, Andrew, would have turned 29 on November 18^th. Andrew’s been gone eight years and every year, I like to take the time to write a little about him - partially, because I want to pay tribute and partially because some may not know his story.

In short, despite an unremarkable pregnancy, due to trauma at birth, Andrew was born severely developmentally disabled. There are more details here, but suffice it to say that it certainly wasn’t anything that was outlined in “What to Expect When You’re Expecting.”

I will say this much: From the moment he was born, we, and Andrew, were surrounded with love and support. Amazing family and friends rushed to our side, propped us up and never let us feel alone. Incredible doctors, nurses and professionals were there to help us navigate the chaos and confusion that spanned the first few weeks of his life. Many of you may have spent time in a NICU (Neonatal Intensive Care Unit) but you haven’t felt devastation until you know that you’re the family for which your story won’t have a happy ending.

Unlike most parents, we had two enormous decisions to make after he was born. First, because he had almost no brain activity, we elected to remove life support. At the time, machines were keeping him alive. As you can imagine, it was agonizing. Then, when Andrew began to breathe on his own, we had to make the heartbreaking decision of what to do next. It was clear that he needed round-the-clock care. Should that be done in our home, with help? Should we choose a special needs foster family? Should we send him to Central Wisconsin Center for the Developmentally Disabled in Madison?

If you know our story, you know that we chose Central Center. It’s funny, but as unsure of myself as I am as a parent, I have never, EVER, regretted that decision. It’s a commonly-held belief that “institutions” are cold and uncaring. That was not at ALL our experience. Even though it was crushing to let someone else care for my child, I knew that his care would be so much better at Central Center than I could give him in our home. And yet, despite the fact that Andrew lived a far longer and healthier life, I still live with a fair amount of guilt over whether I was a good parent to him. At this point, I’m resigned to the fact that it’s just something that I’ll carry with me forever.

Shortly after Andrew passed away, we received many sympathy cards. One was from an acquaintance who happens to be the parent of a special needs child. I don’t know this person very well and she doesn’t know me well nor did she know Andrew at all. In her card, in what I’m sure was meant to be well-intentioned, she said (after offering condolences): “You and I have had similar experiences but made very different choices.” (Her now-adult child has always lived with them.) Even today, that comment still hurts a little – partly because her child is ambulatory and communicative and Andrew was not and partly because it’s a little true. We did make very different choices. I’m not sure she understood that they were for very different reasons.

As much as I rationalize the choices we made for Andrew and still stand by them, I have to admit that I am not always completely at peace with them. I feel this way when I remember that particular sympathy card. I feel that way when people give me far too much credit for being Andrew’s mom. I feel that way when I watch good friends patiently and lovingly parent their special needs children in their own homes. But I also think it’s possible to make the right decision and forever live with tiny pieces of doubt and questioning.

My other two children thrived and grew up in our home and loved their brother as much as possible. But there’s always, for me, that nagging question: What would our family be if Andrew had lived in our home? Honestly, I think we’d be fragile and fractured and worn down by a life that would have had to include round-the-clock caregivers. But we will never know.

What makes a good parent? Is it having great kids? If that’s the case, make me mother of the year. Andrew was awesome. My other kids are awesome, something for which I feel like I can’t take any credit at all. Sure, I did some mothering, some caring, lots of loving…but I’ve always felt like I’ve fallen short in the traditional “good parent” department. Perhaps that’s a reflection of my insecure nature or maybe it’s because I’m not like the moms you see on TV. I was a below-average disciplinarian, short on patience, sometimes, admittedly, wishing they’d grow up faster. (Be careful what you ask for.) I wasn’t much of a cook, didn’t sew or craft and I’m pretty sure I rarely gave out good advice.

Nevertheless, our family has grown up and moved on. Yes, we've ALL grown up. I was only 26 when Andrew was born - still a child in so many ways. We will, forever, be Andrew’s family. But I feel like the incredible caregivers at Central Center also get to call themselves Andrew’s family. I’m humbled to share that with them and will never be able to thank them enough.

You know that phrase “It takes a village?” That’s really the story of Andrew’s upbringing. With our first child, we chose, out of love, to let others help raise him and care for him. Even today, that’s really difficult for me to admit. And yet, because of that choice, Andrew lived far longer than he was supposed to. Sometimes the hardest choice is the best choice.