A few weeks ago I went to the gym for my Monday boot camp class and found my instructor wasn't there. The guy who was leading the class in her absence told me she had had her baby over the weekend. Innocently enough, I asked, "Oh, and mom and baby are doing well?" He seemed really uncomfortable and said, "Actually...I think there's some complications...some special needs." I said, "Oh, what's going on; do you know the diagnosis?" "I think maybe Down Syndrome," he said. "Oh," I said, "How is mom handling that? Have you talked with her?" "No," he said, "I...I just don't know what to say to her."
That exchange got me thinking about my "D-Day" (the day I got Hannah's diagnosis), and things people said to me as they learned about it. One person handed me a piece of paper with a short essay on it, titled "Welcome to Holland".
It says having a baby is like planning a trip to Italy. You've waited your whole life for this, and you're extremely excited to experience all Italy has to offer.
As you exit the plane, though, the flight attendant announces, "Welcome to Holland!" At first you're confused and disappointed, because your dream had been to go to Italy. But...after time, you realize there is a lot of beauty in Holland, and while you will always mourn the fact that you didn't get to see Italy, you can enjoy a fabulous stay in Holland.
At the time, I couldn't even begin to see the beauty of "my Holland". In those early days of Hannah's heart failure, everything was so alien to me, it felt more like I had been transported to a different planet than any European destination. "Welcome to Mars" would have felt more appropriate. It was a long string of scary unknowns, and dire consequences were attached to every decision as we frantically attempted to navigate our way back to Earth.
Returning from the brink still didn't land us anywhere pleasant. I remember feeling a combination of anger and guilt as I read that essay. Broken marriage behind me, I was now a single mother with barely two nickles to rub together, constantly trying to stabilize Hannah as she suffered marathon seizure after marathon seizure, along with every nasty, horrible side effect brought on by a pharmacy worth of medications we were throwing at her in an attempt to get them under control. I thought, "This ain't no freakin' HOLLAND! This is...Chechnya. Am I a bad parent because I'm not seeing a whole lot of warm and fuzzy beauty in our situation?"
Now that I've had some time to reflect, I have a few thoughts on the matter. First, to say, "This is how life is when you have a special needs child" is lunacy. My son has been described as having "special needs" with his ADHD/dyslexia. While his diagnosis has definitely presented challenges, I can't compare it in any way to the challenges Hannah's genetic disorder has presented. That's not even to say there are different "levels" of special needs parenthood. Everything is relative. Green beans are just as much a vegetable as turnips, but that doesn't mean you're going to have the same experience when you eat them.
Second, to "sugar-coat" the situation is - in my opinion - doing a parent a grave disservice. For a long time I felt guilt over not seeing the beauty of "my Holland". I would hate for anyone else to feel guilt over emotions that are 100% natural and normal. Special needs parenting is not just different from typical parenting. It's more difficult. There IS an element of tragedy (albeit more for some than others). The very first tragedy you face is the death of the typical child you thought you were going to have. You have to be allowed time to mourn that loss. It is counterproductive and - in my opinion - disrespectful to dismiss the need for that mourning or to discount the difficultly of the challenges that likely lie ahead. That isn't to say that you're doomed to a life of misery as a special needs parent. I love my life. There have definitely been some dark, rainy days over the years, but the storms have been followed by sunshine that has offered some glorious rainbows. And just like any difficult journey, I've been afforded the opportunity to grow as a person. That's a true gift that I will always be thankful to my children for.
So, as I thought about my gym instructor's new reality and heard this guy saying, "I just don't know what to say to her," I wondered, "Well, what would I say to her now?" That's easy. "I'm here for you." That's what you say when someone is facing a daunting situation. That's what you say when there's nothing else you can say.
