Wishing Him Gone: My Messy Beautiful

Here’s my messy truth: soon after my son Aidan was born thirteen years ago I wished he would die.

Untitled5 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 g-tube, without a diagnosis, prognosis or any medical staff to reassure us, I just wanted him to die quickly.

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

Because of Aidan’s medical issues, I couldn’t feed my own child 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 responsbile 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 use 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 thirteen 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 inconsistancy is holding him back from being more independent. I haven’t changed any laws, written policies, nor started a foundation.

But I’m sharing my messy truth today in hopes 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:

IMG_5868 IMG_3091 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?

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This post is part of the Messy, Beautiful Warrior Project, a blog link-up for the paperback release of New York Times Bestselling memoir, Carry On Warrior: The Power of Embracing Your Messy, Beautiful Life by Glennon Melton of Momastery.

 

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Undiagnosed Children’s Day 2013

Aidan is my giggly 12 year old non-verbal son who uses a power chair like a nobody’s business. I had a normal pregnancy, labor and delivery with him and yet he was born with an undiagnosed disability.

I know what you’re thinking: we spent three months in the hospital when he was born with many excellent doctors looking closely and running numerous tests. They must have found SOMETHING. Perhaps we didn’t try hard enough.

Nope. Nothing… at least nothing with a name. He has plenty of medical issues but no one knows why.

Let’s face it, none of us like the not knowing. I spent the first many years of Aidan’s life in agony wanting an answer, wanting a cure, wanting to know what his future would look like, wanting an in with the moms of kids with DS or CP or Autism. We want to understand and we want to belong. Over time that desire has faded and given way to the day to day tasks of daily living, which has its own complexity. I’m not as anxious about having a name for Aidan’s disability.

So why does Undiagnosed Children’s Day matter?

First, some of us lose services because our kids lack a diagnosis. This is incredibly important to understand because we play a ridiculously stressful name game just to get help. No diagnosis can be a deal breaker which can be a sanity breaker too.

Second, sometimes there is a weird stigma attached to not having a diagnosis, as if we as parents haven’t done enough. Every family has to make their own decision about what they’re willing to try to help their child. I try to balance the quality of our life as a family with what I can do for Aidan and sometimes that means I say no to seeking out a far away doctor or signing up for more therapy.

Third, sharing our stories brings attention to the issue and attention sometimes brings research dollars. The field of genetics is changing at a rapid rate. Someday there may be a name for what Aidan has and some baby in a NICU somewhere may not lose precious developmental time getting help.

But wait, you just wore purple for us on Purple Day because Aidan has Epilepsy. Isn’t that a diagnosis?

Yes, it most certainly is and Aidan does have seizures. That is one piece of his medical puzzle. There are many pieces of his medical puzzle (low muscle tone, motor impairment, cognitive delays, orthopedic issues) but there is no big picture diagnosis that connects them.

But you’ve just hooked up with all of these fabulous CP bloggers for siblings week and it sure sounds like Aidan has CP. What’s up with that?

Um, well, that’s a tough one.  Cerebral palsy is caused by damage to the motor control centers of the developing brain and can occur during pregnancy, childbirth or after birth up to about age three.  Yes, that sounds a lot like Aidan and he definitely has neurological and motor control issues. However, the doctors did not believe that was his diagnosis so the search continues.

Since starting Undiagnosed Children’s Day three years ago, I have been comforted in knowing I’m not alone. Thank-you to SWAN UK and SWAN USA for using this day to get people talking. Please wear pink or blue on Saturday the 13th in support of our children and grab one of the talking points from above to share with others. Link up below and share your story.

This is why it matters to me:

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I believe in the power of story. I believe that change happens when our circumstances become personal and meaningful to others. It’s when you know someone who uses a wheelchair that you are compelled to set up a lemonade stand to buy wheelchairs for kids in developing countries. I believe that stories connect us and help us feel less alone. That moment you read someone’s story and say, ‘Yes, I get it” brings you into your community.

We have two opportunities to tell our stories next week and I hope you’ll join me. First, Monday starts a week of celebrating siblings. Whether you have a child/sibling with a disability or not, please come back monday to celebrate the siblings in your life. Shasta of Outrageous Fortune will be kicking off this week so stay tuned for more details.

Next Saturday April 13 is my third totally made up Undiagnosed Childrens Day and the leading organizations in this field (SWAN UK and SWAN USA) are joining us. Please come back on Saturday to share your story and wear blue (or pink because that’s SWANs color) in support of our children who don’t have a diagnosis. Feeling very alone, I shared the story of Aidan’s lack of a diagnosis and now check out all the places in the UK that will have events this year for Undiagnosed Childrens Day.

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Get your stories ready and if you don’t have a blog you can share in the comments section.

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