What Will I Say?

When we meet new people (which we’re doing a lot of in a new state!), people learn about Paige and they often pose the statement to me “I just don’t know what to say – I’m so afraid to say the wrong thing!” I have been trying to formulate my words in a way that won’t generalize the special needs population, but also address a very important issue for both sides of the aisle.

In typical relationships (no medical complexities involved) if someone says something wrong or accidentally offends someone, the right thing to do is simply to have a conversation, apologize, and forgive. Compassion is necessary on both sides. Yet I’ve noticed with situations with medical complexities, because it’s such a sensitive issue, some feel as though if they say the wrong thing no compassion will be given or they will cause hurt for the long-term. For me personally, it’s hard to know some people may be afraid to ask about my daughter – simply because they don’t want to offend.

In a life with a medically complex child, things are normal for us that aren’t normal for others. Therefore, when someone hears for example that my girl will stop breathing randomly, or she will lose function of limbs out of nowhere, they are filled with sadness and they just don’t know what to say. Yet, in our life, it has become so normal that we talk about it as if it’s our child learning how to unlock a door, or the uncertainty that comes with a child going to school or a sleepover for the first time. All parents are afraid for their children – it simply takes on different forms. As soon as we begin comparing our lives to one another, that’s when relationships lose opportunities to grow.  I am learning not to minimize the traumatic events that happen in my families lives, but at the same time realize that some things are normalized, even if they still cause more pain than say, a child learning how to run around the house unattended.

For me personally, the most comforting and joyful conversations are the ones from children – children who are innocent, they don’t know what grief is (normally), and they are blunt. I’ve had children be so impressed with the fact that “Paige can hold her breath for HOW LONG??” – completely misunderstanding that it’s a bad thing, and yet it turns a dreadful conversation into a smile. Another child lighting up because she recognizes the word paralyzed – “those were some of the people Jesus healed in the bible!” Or some children simply asking, “What’s that thing around her neck?” without any fear of saying the wrong thing. These conversations make me smile – they make me feel like I can talk about my daughter the same way other parents talk about their own children.

Other times where I’m most comfortable is with other special needs moms – we say things like “What’s your rescue med?” or “How often does your child have seizures?” or “I’ve had trouble mentally since we almost lost her last year” as we sit across the table and have lunch at a restaurant. For parents who don’t have these issues, we can’t talk like this – simply because the sympathy is overwhelming, and you now have to explain that you’re really OK – this is just a part of life. In a conversation with those who have a special needs child themselves, it is basically like asking where your child goes to school, what do they like doing – its just a different subject, a different child, and a different life.

My goal personally is to help bridge all of these gaps with my writing. I need to work on understanding and empathizing with parents realizing their child can run out the door unattended. I need to learn how to have that conversation without comparing my situation to theirs. Yet, others can also learn that their issues require the same love as my issues do. We are all trying to keep our babies safe and loved – that’s it. Let’s not isolate ourselves in our own comfort zone – let’s realize that other people’s normal isn’t our own, and it’s only an opportunity to love and grow. Ask questions – have compassion – and get to know the children as if they were your own.

Don’t be afraid to say the wrong thing.