Part of my personal journey of being Jack's mom has been that much of my support in parenting has come through online connections. Of someone happening upon the blog or by chance, meeting in a private FB group and being like "Hey! You have a 23-weeker? We NEED to be friends." These connections have been life-saving and life-giving. We have swapped stories and advice. We have asked questions. We have prayed for each other through diagnosis, surgeries, and major illnesses. With so much joy, we have watched our kids conquer a whole lot. It has been truly breathtaking and I consider it such a privilege to be surrounded by such wisdom. This group of parents is one that understands, with every fiber of their being, what is important. I know your kids by name, follow your story, and think of you a whole lot.
As Jack has grown up from just preemie issues into life-long special needs issues, my online world has only widened. Truthfully, sometimes the special needs world feels much too big. I hear lots of advice that doesn't always jive. I see a lot of anger. I get the anger, but oftentimes, I am not in that place. I read stories that don't really connect and that is OK. They all don't have to. Many times I skip posts. I don't always want to read about the latest controversy. There's a lot, isn't there? Understandably, I don't enjoy reading about the latest child who was mistreated or about the school that didn't care. It's not because I don't care, it's because it feels insurmountable. I don't want those stories for Jack.
It wasn't until a couple years ago that I finally got together with another mom, in person, who has a kid with special needs. We immediately hit it off. We started to meet regularly. Swapping stories. Catching up. We connected on a level that meant I didn't have to explain everything. We became each other allies. We cared to ask the hard questions, the how are you really doing?, questions. And we did it over a cup of coffee. I could see her face and watch her eyes. Maybe some of you are much better at this than me, but from what I know and what I hear from others, it is really hard to make those special needs friendships. But with only my limited knowledge of them, aren't they so worth it?
I don't know about you, but I need the balance. I appreciate my online community, especially those we have known since Jack was born. You know I love you guys. But I also want the real-life connection. The "rough day. Need to talk. Can you be there in 20?" type of connection. Where being in each others presence is a balm for my soul and not another opportunity to feel different or invisible.
As Jack gets older and his needs become more pronounced, I know I am going to want to know those in my own community, in my own thirty miles radius, who have kids that are going through the same thing. I'm going to need to know which therapist is best or which program I should look into. I'm going to want to talk about my anxiety and fears of Jack living in a small town and know that I'm not alone. Since Jack didn't "grow out" of his preemie or medical issues, I'm going to have to "grow in" and find others doing the same.
|Oh. This photo? I just wanted to show you how handsome this kid is getting. Lovin' the outdoors and lovin' life.|