I’m okay, but I’m not okay. And that’s okay.

My middle child, Mason is autistic. Because he’s still so young, we’re unsure of where he falls on the spectrum. As of now, our doctors continue to refer to him as “high risk,” leaning towards the more severe side of the spectrum. Life with Mason is so very beautiful. He, like all my children, bring me more joy than I could have ever thought possible. But sometimes life with an autistic child is challenging. There are days he is nothing but irritable, fussy, and demanding. But the most difficult part for me when it comes to Mason, is his mental absence. I have these moments with him. Moments I tend to describe as, “It’s like he’s really here with me.” So often it’s like Mason is far away somewhere. He’s here with me physically, but his mind is on a distant planet. More often than not, I look at his eyes, his gaze, and I know he’s not here. He’s looking through me and moving around me as if I were invisible. I say his name and make funny noises—anything to get his attention, but he doesn’t hear me. He’s in his own world and it’s like these giant cement walls are up and keeping me from joining him there. It’s moments like this when life seems to pause and my heart aches because I want to know where his mind is and I so badly want to bring it back to the here and now—back to me. And sometimes I do. Sometimes I can sing a song or make a noise and it’s like suddenly a window appears and Mason is right in front of me—his eyes looking at mine instead of seeing through them. In those moments I’m so frantically happy. I’m so happy to be there with him, to have his attention, to really connect with him. But at the same time, I feel so anxious, so rushed because those moments are so fleeting. So rare and so very precious. One second the window is there. The next I’ve lost it, only to be shoved back behind the walls. The connection with my sweet boy suddenly severed in such a physical way that my chest hurts. It feels so odd to say that I miss Mason when I’m fortunate enough to be with him 24/7. But I do sometimes. When he feels so out of reach, when he loses himself in his own world, I miss him. And that’s when I get lost in my own mind, wondering what Mason would be like without this disorder. Wondering what it would be like to have his mind here with us always. What I wouldn’t give to be able to reach him without trying so hard–only able to wait for the next window to appear. I wish I had an uplifting ending to this post, but this morning has been very hard, and sadly I do not. But maybe not everything has to have an uplifting end. Maybe it’s okay to accept the sadness sometimes and allow yourself the opportunity to genuinely feel it so that you can work through it. When we first realized Mason was different because he was autistic, many professionals, books, and friends told us it was okay to mourn. They said that we would go through the stages of grief and that mourning was normal. At first I was confused by this. I hadn’t lost a son, he’d just been diagnosed with a brain disorder. But as time has gone on, I have come to realize why parents of autistic children mourn in the beginning, and maybe for some time after. It is because we feel like we’ve lost the child we envisioned when they were in the womb. The child and his or her future that we subconsciously thought and dreamt of. No parent dreams or longs for their child to be autistic, so when you’re caught off guard, blindsided by the diagnosis, you suddenly find yourself mourning the child you thought you’d have. I mourn the Mason that would be able to speak right now, the one that could say, “mama,” and ‘wuv you”. I mourn the Mason that would be able to play with his older brother who wants so badly to play with him. I mourn the Mason that would blow me kisses and return my hugs. The further I get in this journey, the more I come to realize that none of the emotions parents of special needs children face are wrong. It’s okay to feel sad. It’s okay to feel mad. It’s okay to feel cheated. It’s okay to feel. So today I’ll end with a saying from a very wise friend of mine. ‘Today I’m okay, but I’m not okay. And that’s okay.”

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Author: lindsaykayee

I'm a twenty-five year old boy mom of three, three years and younger. A preemie and ASD momma thriving on Jesus, Coffee, and Clorox Wipes!

7 thoughts on “I’m okay, but I’m not okay. And that’s okay.”

  1. Lindsey, that is a very powerful piece. I understand why your Grandpa is so proud of you. You are an awesome woman and mother. You have taken a very difficult situation and approached it with not only great love but amazing introspection And you are able to voice your thoughts in such a way as to give strength to others in your situation. I am glad your Grandpa suggested that we read your blog. You are inspiring and I wish you strength on this journey..

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    1. You’re so very kind! Thank you for taking the time to not only read it, but also for your encouraging and uplifting comment!

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  2. I know what you mean. My Elizabeth is present physically yet distant, too. And it is hard. All of this is so hard. How old is Mason? Elizabeth will be three at the end of June. She was diagnosed in February.

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    1. I’m so sorry to hear that you too struggle with this. I am, however, thankful that we don’t struggle alone. I’m glad I’ve been able to meet others who share in this and validate these feelings. Mason is 19 months old. How old was Elizabeth when you started the diagnostic process?

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      1. At 28 months her pediatrician gave the referral to an autism center but the wait list is about 9-12 months so I looked elsewhere. We found a pediatric psychologist when she was 29 months who did the evaluation. When everything was said and done, she was 30 months old.

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      2. So glad to hear you got in sooner! I’ve heard so many stories of their diagnosis taking years. We too have been very fortunate to get in with nuero very fast and will likely receive our diagnosis in the next month or two.

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