I realize lately that there are a lot of things I miss. They say the journey as a special needs parent involves mourning and loss, and maybe that’s a bit of what this is. Either way, I just know that there are some things I really miss…
I miss the blissful ignorance you have before realizing that your child has issues. I miss the dreams and plans and ideas and visions you have, the things you think you’ll do, the way you see your future. I miss the excitement for trying new things and new challenges. I miss not having to catch myself and change those plans in my head and come up with Plan B. And C, D, E and F. Or just realizing that those hopes and dreams aren’t realistic and that they need to be set free.
I miss my friends. On one hand, I have to say that some amazing people have come into my life and really gone above and beyond to try and help and especially to help with B. I am beyond thankful for them, and feel like they are truly gifts in our lives, I can’t stress that enough. But even those friends I don’t really get to spend time with. And I do miss my old friends. I miss going out to dinners or shopping or just chatting by email, text or messenger. I can’t put the blame for friendships fading away on others, that’s all on me.
I have without a doubt not been the friend I used to be and wish I could be. Even if I could somehow manage to make time and plans to meet a friend and go out to dinner, reality is by the time 6pm rolls around, I simply want to collapse and barely have the energy to toss some pathetic excuse of a meal in front of the kids, much less get myself ready and head out to socialize. And even if I did, I don’t think people want to hear about the issues that have taken over every corner of our lives. But they consume you in a way that it’s hard to remember what you used to talk about. I miss girl talk and chatting and doing whatever it was I used to do.
I miss going to my daughter’s dance studio and always having friends and people there (this has nothing to do with special needs issues, just that everyone my daughter used to dance with has moved elsewhere). It was one built in place of adult interaction, some laughs and support. I miss that.
I miss doing the mommy & me type of things. I remember taking B to the park, to kinder gym type programs, to the zoo, to the mall play area, to story times, to McDonald’s play area, you name it. I never do that with G. We go to therapy. Every day. Take B to school, take G to therapy, come home, lunch, nap, play or do at home therapy for 30 minutes or so then pick B up. I remember how even if you went to those mommy & me (not formal events, just using the term) things, you’d interact with other moms. Even if it was just a smile and a little small talk, or heck, just being in the presence of other moms. You’d connect. You’d get a change of scenery, exposure to new people, places and things. I never really gave it a second thought, but not having it is hard. It’s like Groundhog Day. The same thing over and over and over. I miss those fun activities that break up the days, give us new things to do and create bonds.
I miss being able to take part in activities at B’s school with her. I used to be the mom that was always there. Now I’m the mom that is never there. I miss being a part of that village that raises kids. I feel like I’ve moved into the middle of nowhere off the grid, out of touch with the villagers.
I miss interaction. I guess this goes with missing friends and mommy and me things. This special needs parenting thing is a lonely road, even for someone like myself who is extremely introverted and very independent. The days are G and I and therapists. Don’t get me wrong, I love our therapists, but our therapy time is all work, packing in as much as we can in the time that we have. I, who loves and values silence, misses talking to people through the day. I talk to G all day long. I narrate everything we do. But only one of us speaks. Many times I feel like the dogs and I have more reciprocal conversations (no, I haven’t lost it, I know the dogs don’t actually talk). There are days where it almost pains me to drop B off at school in the morning, because I miss her so much through the day.
I miss fun. My husband and I talk about this often. There’s no fun. There’s no leisure. There is rarely something to look forward to. We just try and survive and make sure that B still has fun in her life at least. I’m not sure we even really remember what fun is. I think our goal is to just not be overwhelmed with stress. To heck with fun, we just try and get through dinner without losing our temper as food is thrown at us and tantrums are the main dish on the menu. I miss using nap time for a bit of R&R, fun email or text exchanges with friends or something that gives me a feeling of a little downtime. Instead I spend the time frantically trying to get work done, dealing with insurance companies, dealing with Early Intervention and finding, printing, laminating and cutting out yet more flashcards for therapy (that most likely will bring nothing but more frustration). I miss doing fun activities with my toddler, and instead setting up things that I think will be fun, only to have them last for two seconds and G hating them (and usually throwing them at me or the floor).
I miss being the parent I wanted to be. Never in my life did I think I’d be the parent that would dump a box of sugar coated cereal onto a coffee table and let me toddler sit on the coffee table and have a sugar filled white flour feast. I hate how low my standards are becoming. I hate that I hide in the bathroom for ten minutes because I can’t take any more whining and fit throwing and trying to unsuccessfully play charades for 12 hours straight. I miss having the patience that my kids deserve at the end of the day. I miss having all the time in the world for B. I miss her being able to tell me about her day, without her sister screaming or needing something or getting into trouble while I’m trying to listen.
I miss feeling hopeful. I hate saying that, but that feeling of optimism, that this will be okay, that we will work hard and fix things, that feeling is slipping away. The reality of that not happening is sinking in. I miss being hopeful and thinking of the future, and instead trying hard to avoid thinking about the future, because it can be so overwhelming. I miss being able to say to myself that “this is a phase, it won’t last forever” because I don’t know that to be true. I never realized how much that helped get you through and buy patience, until I lost it. Instead of thinking “she’ll outgrow this behavior/issue” I think “will she outgrow this behavior/issue?”. I miss thinking how fun something like Halloween will be for G, and instead am filled with questions of if she’ll ever even remotely understand what Halloween, or many other things, are about. I miss going to doctors and thinking they will send me out feeling hopeful, telling me things aren’t that bad.
I miss progress. I miss being filled with excitement when B would do, say or learn something new. I miss sharing that, texting my husband or family, and saying “guess what she just did?”. Rick and I have talked about how that used to be a daily occurrence for us and now, it never really happens. I miss how those moments helped offset the tantrums, fits, diapers and messes. I am at a constant state of internal turmoil of still trying to hope and push for progress and just letting it go, expecting nothing, and removing some stress in the process. I don’t want to give up and just say “it is what it is”, but for the mountain of effort we put in, it’s hard to not have a payoff. I just keep telling myself it’ll all pay off someday. I have no idea when someday is.
Edited To Add… I miss having my shit together. Wow, how did I leave this off the first list. I value things like being organized, on time, on top of things. I. Miss. That. Some days I want to wear a shirt that says “I used to have it together”. I live in a constant state of disorganized chaos. I can’t remember if I’m coming or going, what my kids names are or what my name is. I mix up appointments and times and who, where, what, why and how. I embody day late and dollar short. I have become that person. This is one of those things that I know isn’t critical in life, but there is something about having control over those things that helps you feel as if you have control over your life, and I know that’s what it comes down to, feeling out of control. What’s that they say, the state of your environment is a reflection of the state of your mind. Chaos – it’s what’s for dinner. And breakfast. And lunch. Unless you can find some Cinnamon Toast Crunch on the table or Goldfish crackers in the car seats.
Don’t get me wrong. It could always be so much worse. Always, always, always. We have so much to be thankful for and I count those blessings daily. But at the same time, I miss so much and writing has always been my way of processing through things. Write it, accept it, move along.