Special Needs Family

I have a love/hate relationship with labels. Like, labels/names you place on people or situations, lifestyles, etc. Labels. Sometimes I love them because they bring awareness, they get people talking and asking questions. But sometimes they are used incorrectly, or lead to embarrassment and shame. Sometimes labels carry a stigma that you can’t shake. When you have children, your label spidey sense is incredibly sensitive. If I give this a label will it inhibit or push? Will hurt or help? Is it too different? Is individually good? How much is too much? And on…and on…and on…and on…and on…the questions go. I’m pretty sure THIS is how parents go gray. They worry! Worry and question. Question and worry! <——-THAT was not in the book!

So, labels. I don’t like labeling myself or my kid…for the most part. I think it limits him and me to a single category…for the most part. But at the same time, having a label as a base to branch off from, can be…empowering. For example, this blog has a few labels. Mommy Blog. Single Mom Blog. Ulcerative Colitis Blog. Advocate Blog, and so on. Those are all labels my blog may have depending on who is reading or talking about it. However, The Crazy Creole Mommy Chronicles cannot be defined by simply ONE of those labels. And if I had to pick a base from which the rest would come, I’d have to say Mommy blog. Above everything else I am a mother and this is a story about my life as a mother. I am a mother who happens to be a single mother of mixed heritage with Inflammatory Bowel Disease (among other things) who advocates for patients & families. In this instance, my labels give me strength. They give me power. They remind me that I do amazing things inspite of my labels. My labels also give me security, because they give me communities. A source to pull strength & love from when I need it.

Lately, I’ve been struggling with a label that I don’t often use because even though I can say, “it is what it is.”, it is still often too uncomfortable for me to admit out loud. What is that label? “Special Needs Family”. The reasons why I am uncomfortable with that label are not the reasons you may think. You see it is globally accepted that a stereotypical special needs family is one that has a family member with a learning disability or a physical disability. And I have never seen myself fitting in with a special needs category because those families are some of the strongest, resilient, brilliantly creative families I have ever encountered. Seriously! The moms in my life who have children or spouses with Special Needs are titans! Ain’t nothing getting pass them or through them! LOL! I don’t feel like I qualify for such an honor.

But what got me to finally accept that maybe we are a special needs family is, Hippo. Hippo has a mommy who has limitations. Our lives aren’t run by my invisible disabilities, but they certainly slow a lot of things down! There are often times we need to be creative with time, money and adventures. ┬áThere are times he benefits from special privileges because of it and then there are times he is limited because of it. For instance, we have Disneyland passes because I can’t be at Disneyland all day. So, we go often in short spurts. There’s the plus. The minus, sometimes mom is in a scooter or wheelchair. Or Hippo has to ride in his stroller at the end of the night, because I can’t carry the heavy sleepy 5 year old, back to the car………okay, wait, he might be okay with that one. LOL! But you get my point. There is no one person with Special Needs. I may be the patient, but my family is affected. We are a Special Needs family. What does that label mean? We see and live our life a little differently than most…but we are still living and we have each other to support.