Without a Crystal Ball

Our Journey through Chronic Illness

Thoreau-empathy-quote

 

For the past 3 years, I have sat within this little party of pity that I call “but I can’t relate”. It means everything that a parent was going through of a typical child, I felt like I simply could not relate. You see, Von didn’t do things at a normal rate, and somethings are still a challenge for him that 18 month old kids do with ease. I spent a lot of time watching my friends children’s grow and think “I’ll never be able to relate because Von is too different”. Then I had this moment a few days ago. Maybe it’s ME that they can’t relate to, but they all try so diligently to find a balance with me. Maybe I am the one putting up the barriers, creating road blocks, and making them feel like it’s impossible to be around me. Maybe I need to CHOOSE to relate instead of worrying about what we have different, don’t we all have some things in common?

It all hit me yesterday, while in a group text with my ECFE Mom’s group, Mom’s were discussing Potty Training. Potty training isn’t even a THOUGHT in this house hold. Von is so far from potty training, I’m beginning to think I’ll be investing in Pampers and Huggies Stock until he’s an adult. I seriously have no idea when or if it will happen. His doctors and nurses all believe he will be in grade school before everything starts to click. Bladder control is TOUGH when you have Dyspraxia. He has difficulty with fine and gross motor skills, and holding a bladder is a pretty complex process that takes a ton of planning on your part. I realized in that moment, that it’s my life that is different, but it doesn’t mean that because we are different we are bad. It’s just the path we are on. I’m absolutely so excited for all my friends that don’t have to deal with diapers anymore. I was giddy thinking about these little ones no longer needing diapers. I was simply HAPPY for them. In that moment, I realized being Happy for others is a lot better than being mad at them for having a normal child. Why should I penalize them for not being the same as me? Why should I get angry at them because I was gifted Von by God? I can’t be angry because despite all the things we have to do for Von to help him, he is the best thing I’ve ever been given. I need to accept every part of Von and that means that he isn’t going to do things in the same speed as others. None of that makes him bad. None of that means I’m doing something wrong. And it certainly doesn’t mean I can’t relate to them. We all still are mother’s to tiny little terrorists that get angry with their videos when they are buffering, throw toys in tantrums, think playing with animals or daddy’s are super fun, and most of the boys are obsessed with trains and cars. In finding the similarities, I was able to realize that if I focus on the positive, I can be a better and more supportive friend.

It also had me thinking about illness. Sure we deal with a ton. Heck, Von has a cold as we speak. It’s stressful. We are monitoring his fluids, respirations and ensuring his cortisol levels are stable enough to get him through the cold. I know for my friends a cold is probably not the end of the world too. But I often hear things like “well I’m sure you have been through so much more than us”. It’s ok though. Just because Von has had a rough go, I don’t ever want people to feel I’m diminishing their child’s ear infection, tube surgery or strep throat. For a healthy child, those are BIG deals. Just because it’s NORMAL for us and we’ve had BIG trauma, doesn’t mean I don’t empathize with my friends when their kids are sick. None of us want their kids to be sick. So if Strep throat is really getting your kid down, I feel for you, and I will be there for you to commiserate with. I certainly don’t want people to assume because we’ve been through the ringer that we can’t sympathize and support. We all have different journeys and different stories.

Today I’m taking accountability for my role in my isolation as a parent in this world. I know our path is different. But isn’t that LIFE. We have have STUFF we are going through and for each of us it’s different. If I allow myself to believe it’s worse for me than it is for you, I’m failing as a human and as a Christian. Suffering is an unfortunate part of life, and I am making a pledge to all my friends and family to do a better job of being there, being present and being accountable. Your big deal is a BIG deal to me. Please remember that 🙂

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