Dear Mama, It's OK to Ugly Cry When Your Child Is Undiagnosed


Today I ugly cried.

I ugly cried so hard.

I cried more than I have allowed myself to cry, probably ever. I really cried.

I cried for the past year. For the times I have spent pleading and begging and scratching and clawing; hoping that someone — anyone — would believe me when I said, “Something isn’t right with my child.” I cried out defeat. And disappointment. And discouragement.

I cried for the words that have been branded in my head and on my heart.

Words said by others: “Everyone does that.” “It’s completely normal.” “Nothing is wrong.” “Don’t worry.” “But he’s doing so well.” “But he’s making progress.” “You have to be positive.” “Give it to God.” “At least he’s ___.” “Maybe you need to let it go.”

Words I’ve told myself: “Maybe you are imagining it.” “Is it really that bad?” “You have to be OK.” “Don’t let them know how broken you are by this.”

And words left unsaid by the people I really needed to say them: “I’m so sorry you’re going through this.” “What can I do?” “Teach me so I can help you.” “I believe you.” “This is so tough.” “You’re doing great even when it feels like you’re not.” “You don’t have to be strong all of the time.”

I cried at my inability to thrive. I cried because my faith in God is at an all-time low, and even though I want to “give it all” to him, the only thing that has gotten me to where I’m at today is the fact that I have pushed on despite no one believing that there was something more — and I was right.

I cried because I was right.

 

I cried for denial. For mine, which tells me I can pretend I am OK and “handling” things, when really I am entirely broken by this journey. It prevents me from telling people where I really am. It holds me back from ever reaching out for help. It has numbed every emotion I’ve had — not just the “bad” ones.

I cried for the denial of others, which only allows them to see the things they want to see in my son. Which only allows them to see everything that appears “normal” and ignore anything that doesn’t. Which tells them that maybe it isn’t what I make it out to be. It allows them to look the other direction because it’s easier for them to accept if they don’t see it. I cried because despite looking like a typical, healthy baby, my son is not typical. My son has a disability. I cried for that, too.

I cried for my son. My beautiful, soulful son. I cried over the big, scary and infinite unknowns and unanswered questions. I wept at the toll that every procedure, appointment, trip and test has taken on my son, me and my husband, and how that stress has trickled down to my other children.

I cried because this journey has been so, so hard. But I have never felt like I could really be honest about it with anyone.

I cried because I finally realized I need help and I need to ask for it. Today. Now. I cried because I realized I should have asked for help a lot sooner. I should have been asking for help all along.

And I cried because surrender, though painful and confusing and even defeating, is the only choice I have left.

Being a mom to a child who has a disability is not something that comes with a guidebook. And when your child is undiagnosed, life feels completely out of your control. It is the most uneasy feeling, ever. I tried to deal with it by “controlling” anything possible, which is kind of a joke when I really think about it. Look at all the things I was “controlling.”

Please know it is OK to acknowledge the unknown territory and how crappy it feels. It’s OK to say to anyone, even yourself, “I am struggling. And that’s OK.” Because this is a struggle that no one can prepare you for. Maybe other people expect you to be OK because they don’t understand the big picture or because they’re in denial about the gravity of it all, but regardless — you can feel however it is you feel. Denying it only saves those feelings for later.

How I wish I would have cried as these things came, rather than saving it all for today. How I wish I would have realized how perfectly OK it is to not be OK. Whether that’s for five minutes after a bad morning, or whether it’s for a few days, or whether it’s just a general feeling for the time being.

Be patient and loving to yourself. And cry whenever you need to. This is your official permission slip.

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