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I’m Sharing My Messy Secret to Set Someone Else Free

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Aidan was born with complex medical needs and spent the first three months of his life in the neonatal ICU. When he came home on oxygen and with a gastrostomy tube, without a diagnosis, prognosis or any medical staff to reassure us, I just wanted him to die quickly.

Because it was such a horrid, shameful thought, I carried my secret burden alone, not even sharing it with my husband. I was lonely, overwhelmed, exhausted and scared.

Due to Aidan’s medical issues, I couldn’t feed him, nor did he even have the ability to gaze at me or coo in response to my voice. He was a stranger, really, hardly present. Those blissful feelings of maternal love were nowhere to be found, though I faked them well enough and smiled proudly at my son in front of others while grieving and hiding in a fetal position at night.

I wanted him to die, not because of who he was, but because of who I was — a mistake of a mother.

I felt responsible for him, obligated to try to love him, but all of that pressure just left me a sinking ship, weighed down by shame and failure.

When Aidan was almost a year old, another mom of a child with a disability saw my tired, distraught self and told me this: “You probably don’t think you can handle raising Aidan right now, but I promise you will find your way. I used to pray for my son to die and now I can’t imagine life without him.”

She didn’t know my secret because I told her; she knew it because she lived it.

That friend set me free that day and gave me just enough hope for the next.

I’m 13 years into raising a child with a disability and I’m not that same traumatized mom I once was. Sure, it’s still draining and sometimes lonely and scary. I wonder if I’m making the right choices in fighting his seizures. I wonder if my inconsistency is holding him back from being more independent. I haven’t changed any laws, written policies or started a foundation.

But I’m sharing my messy truth today in the hope of setting someone else free. You are not alone. You are living a seemingly unbearable moment. You are allowed to be overwhelmed. Your pain and grief is real because it’s yours. You are not a mistake, and neither is your child.

And here’s my beautiful truth:

special needs the mighty

My willingness to step into fear and push boundaries and learn new things and support other parents and get involved and love this incredible child has changed me. The hard work of finding my way has been messy, rarely easy, but always worth it.

The truth is I can’t imagine my life without him because, really, isn’t he beautiful?

A version of this post originally appeared on Family Synapse.

The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Originally published: May 13, 2015
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