A year ago today my beloved and I drove our son to the only psychiatric hospital for children in Atlanta. It was the result of him spiraling out of control and his unrelenting, debilitating unhappiness and our inability to help him through love, doctors, patience and medication.
It was the worst day of my parenting life. I just reread that a year later and while things are better – with certainty I type those words – I can’t help but wander back into the desperate days of fear as a parent and cry sitting at my desk at work this very moment. Complete desperation and helplessness. That feeling will never leave me no matter how many hurdles we climb or roads we go down.
It’s been a year of stabilization. Those that are close to us and interact with him will tell you the changes are remarkable. They will tell you they can’t believe he looks them in the eye, has had real conversations, that he connected. They will tell you he looks like a different child. They will tell you that he looks happy.
For all of those people who love him and us those statements are 100% true. It is also true that we’re on a long road of the dance that I talk about that is a mental health diagnosis. A dance to music we can’t hear and a dance we don’t know the name of and it is some days a frightening one. But it can also be blissful. Like we’re in sync every step and we know exactly what move is next.
That is what our life is like. We try to embrace the joys we have, we try to stay grounded so that during the next crisis (and it will come) we can handle it with grace and resolve. It’s hard to describe this life to people who aren’t living it and it’s even hard for the people that are close to us to understand.
Many days I feel an overwhelming sense of gratefulness and sadness in equal parts. The pressure is there to do right by our son and daughter every single day. The pressure to live in the outside world as best we can without the judgment from others is there all the time; we feel it. Unfortunately it is impossible to live this life without judgment.
You can’t understand the impact of a life-threatening diagnosis on a child or a family. You can’t realize those events shape every other characteristic of a person and a family. Imagine not knowing what crisis will happen tomorrow from a mental health perspective or a physical health perspective. Imagine those things happening to someone you desperately love and imagine yourself only being able to react and do the best you can with the split second decisions you sometimes have to make.
We’ve done the best we can in the swirl of the issues we face with the kids that crossover into each other for mental and physical health, education, social, and emotional health. The way our family looks and acts doesn’t always reflect what we want it to but it is who we are and we don’t feel shame.
Feeling shame would tell my son and all people with a mental health diagnosis that it’s wrong for you to be that way and it’s your fault. Feeling shame and projecting that onto my son would be wrong for many reasons. Least of all it would tell him he is less than. Less than those that blend in, don’t make trouble, look and act normal and behave.
He is certainly not less than. He’s more. What is he? Funny, troubled, stable, wild, strong-willed, frustrated, caring, thoughtful, artistic, loyal, loud, sad and happy. I won’t let you dismiss him for the challenges he faces in mental and emotional health. You can’t judge him without knowing all of the qualities that make him unique.
I double dare anyone to get to know my son and not be charmed by him and what he has to offer the world. Isn’t that what we all want? To be valued for what we offer the world.
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Hugs to you. I can’t imagine having to do that and I appreciate you sharing your experience. I’ve had so many friends who have had to do the same. It’s so painful to watch them go through it. I know it could happen to me one day, just due to the nature of my children’s issues. Thanks for putting it out there and being real.
Thanks so much, I appreciate your comment so much.
I am also the parent of two special needs kids and I can totally relate to what you wrote. In grade 3, my 1st child was diagnosed. In grade 5, my 2nd child. They are now 19 & 18 years old. My eldest is doing really well … stable, happy and succeeding at university. My youngest son is still struggling. Hence, the entire family is struggling. Glad to see you are reaching out to the community and talking about the issues. Nothing is worse than feeling as if you are in this situation alone.
Hang in there!
Karen, someone once told me that we’re as happy as our saddest child. Wow do I think about that statement a lot. Hearing about your oldest gives me hope!
I am charmed by him from reading about him, thanks to you. I do hope that one day that charm will be done in person. I am so glad that I’ve met you. I am so glad that you share.
Thanks for sharing and listening…hugs.
Powerfully written, Julia. Gage is pretty amazing, he was charming even at his lowest–something draws you in no matter what the situation he’s in or creating. I guess it is his strength, his power. You Roberts all have that, you know. You’ve created a circle of power. I know you don’t always feel strong, but together you guys are. It’s a circle with you as its epicenter.
Sniff, sniff. As usual you make me kinda tear up. Like a big sis being proud of me.
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I love this post. I can tell how well you are connected to your son, because that I have thought about a lot. You get it Julia. And that is awesome.
Thank YOU for helping me connect to him. Because you shared your story is why I get it. Hugs from all of us.
Bravo!
Thanks Marianne!
I cannot believe how far that little man of yours has come in one short year. I’m so thankful you kept pushing and got him the help he needed, even if it was beyond hard.
Sending love and best wishes to you and your family. always.
I can’t believe it either. Some days it feels like yesterday, some days it feels like a year ago! I guess it depends on how well he is doing that particular day. Thanks always for your support.
((hugs)) I can’t imagine how difficult this year must have been for you. ((hugs))
Thanks so much. It was a rough year (well, honestly the year before that was the roughest) but we’re through that one and on to the next.
Some of this post feels as though I could have written it myself. Why are you in my head?! My first experience with a psychiatric hospital was admitting my son two years ago, just a couple weeks after his eighth birthday. Since then, we’ve had a rollercoaster of diagnosis and treatment and IEPs and trying to ignore the dirty looks in public when Hoss goes manic.
In the past year, we’ve hospitalized my daughter also (four inpatient stays, one partial hospitalization and two rounds of the state’s only intensive outpatient pediatric psychiatric program). She hasn’t even hit her thirteenth birthday yet.
But we deal and we thrive.
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