Ever hear the song ‘Killing Me Softly’? I used to listen to the Fugees sing it over and over. This is kind of how I feel when I read some of my husband’s blog posts. I’m not sure if I can put into words how it feels to have your life put into words for others to read and give their opinions on.
THE LYRICS GO:
I felt all flushed with fever, embarrassed by the crowd
I felt he’d found my letters and read each one out loud
I prayed that he would finish, but he just kept right on
In our small town with people who know us, the reactions are mostly encouraging and positive. When a post goes to a larger audience, there have been some more severe reactions. However, my husband and I know the power of sharing our story. There are those out there with very little support and resources and they are the people Ryan writes for. So, we keep on… There is power in telling the truth. If we only brought the sunny side, or the best of what we do and feel, it would cheapen the experience and wouldn’t be fair to those who “need” to know that nobody has it all figured out. If you want people’s highlight reels, stick with Facebook.
Killing Me Softly is exactly how I felt reading ‘Things Are Changing’ the other day. Ryan wrote that the post felt unfinished and he was right. His cousin Shawn responded to the post that is unfinished because Jake is unfinished (paraphrasing) and he is absolutely correct. However, there was something else missing and I am going to try to explain what that is.
Every parent has hopes and dreams for their children. Some of the most basic being that they will be happy, healthy, and surrounded by people who love them. My dreams for Jake are not very different from those of parents of neurotypical children. I certainly hope that he is happy, healthy and surrounded by people who love him. The third one is one that I focus on often. Perhaps the most elemental wish is that he be satisfied with what he has, is, and does. Happiness is too glib, but he should get to feel as though he deserves or is capable of his goals.
If your child wants to be a nurse or a fire fighter, as a parent you encourage it and help them in any way that you can to help them make it happen. With Jacob, it’s more than that. Even things that others take for granted may be out of reach for him. My panic comes from being unsure if I can even help him attain the most basic of dreams (having friends, a girlfriend, and some day children). I am heartbroken. There are no other words to describe it. When I go to bed at night, I can’t just go to sleep. Too much races through my mind. I have to keep my mind busy until I literally fall asleep while doing something else because I dwell on it. Is this bad? Yes. My mind tells me that I just need to put it in God’s hands, but my heart hurts and won’t let me leave it there. It sounds coldhearted, but I wish that Jacob were either developed enough to have a shot at his dreams, or so profoundly impaired that he not dream beyond what I can provide. How’s that for full disclosure? Selfish…I know…
Jake is always surrounded by people who love him. Despite these people being there, he is still very much alone. He doesn’t have a best friend who comes over and hangs out with him. He doesn’t have anyone besides me and Ryan to confide in and talk about girls with. In eighth grade, he came home from a dance crying. Someone had told him in school that day that they would dance with him. He stayed to the entirety of the dance, but they never came good on that promise and he was heartbroken. Is this normal for middle school dances? Yes. Somehow when my other children have their heart broken, I handle it better because I can offer advice and explain things. I can’t do that with Jake and I feel his pain more intensely. I held him gently while he cried in my arms for over an hour.
What is missing from the post is the emotion, the hard conversations, the fear, the sometimes crippling panic. Ryan is good from separating the facts from the emotion, but we as parents have some pretty extreme feelings about these changing times. There is usually more than just a little bit of panic under the surface for me. As Jake becomes more aware of the differences between him and his peers my heart breaks a little more. He is now able to express his hopes and dreams and every time that he does, I feel a sharp stab of panic and pain because his future is so uncertain. I know we all have to curb our dreams to match our abilities. After all, we’re not all astronauts and ballerinas.
I don’t want you to think that I have no faith in him. I am Jake’s biggest fan, advocate, and cheerleader. He has already defied the odds in so many ways. We will find a way through all of this too, yet sometimes it seems like a high mountain to climb. Jacob doesn’t yet realize that many of the things he so desperately wants may be out of reach for him. I hope that I never have to tell him. I’m torn between wholehearted support and help to achieve the impossible, and having to let him down gently that he’s just not going to be able to do all those things that he wants to do. What a crappy place to be. I pray daily that he can go farther than anyone has ever expected. Based on what we were told when he was in elementary school, he has already defied most expectations.
Maybe these feelings are feelings that everyone shares, but no one dares speak out loud. He’s our oldest. He’s the only teenager we’ve ever parented. He’s also our only child who fundamentally may not have what it takes to make his dreams come true. That is the burden that we and so many other parents carry.