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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And Then I Talked About Pissing Contests in Church

I went to speak to our Mothers of Preschoolers (MOPS) group at my church a few weeks ago. Here were these sleep deprived, spit up on moms with newborns and energetic tikes wanting to know how to be part of my world.

I got to share how sometimes my journey looks just like theirs (we all celebrate our children and get tired and work hard to see them progress) and sometimes it’s very different (Disability World has more doctors and meds and bills and fear). They wanted to know how to help me; how to teach their children to talk to Aidan; and they were eager to know how to not offend us.

I told them the truth. I’m one person and I’m not easily offended and sometimes I feel so dang left out that I don’t even mind if they stumble with awkward words. “What’s wrong with him?” “What’s his diagnosis?” “Why is he like that?” Others may take offense. “Nothing’s wrong with him.” “None of your business.” “I have no idea.” I welcome the conversation.

The truth is that there are no real magic words. My best suggestion was to ask exactly what you would ask another mom. “What’s his name?” “How old is he?” “He really knows what he’s doing with that chair.” All of these comments tell me that you see my child. Of course you see his disability; how can you not? But if you make an effort to really see him then I feel comfortable telling you more.

And here’s one more oh so important thing we have in common; these tired mamas want to be seen as well. One brave woman raised her hand and said that she has a friend who has a child with a disability. She feels ridiculous sharing her sleepless nights and sibling rivalry knowing that her friend deals with numerous doctors appointments and a strict medicine regiment. She may feel a little bit less than compared to this other mama.

In one moment my heart broke and in the next I got all fiery because really your life is hard because it’s yours and your pain is painful because it’s yours and your mess is messy because it’s yours.

“Motherhood is not a pissing contest,” I told these lovely church ladies who know about mess and doubt and imperfection and working hard and feeling so alone but never quite having alone time.

I’m so grateful that these women want to be part of my life, but I too want to be part of theirs. If I don’t get to hear about their teething babies and exploding diapers and broken strollers than I’m left out again.

Can we please just do this beautiful mess of motherhood together?

 

From the Rooftop

This is a post about Liam, Aidan’s neuro-typical (NT) brother, my first born, the child that made me a mom.

Here’s what it’s supposed to say:

I’ve always been very conscious that Liam’s life is different; disability effects the entire family. I’ve done my best to give him a full and wonderful life. I signed him up for soccer and baseball and tried to cultivate peer friendships. I make sure we have time together when he can have my undivided attention. We have cafe dates with hot chocolate and croissants and a game of cards. I have no idea if Liam is more tenderhearted or mature because he has a brother with a disability because it’s the only life he’s known. Liam can make Aidan giggle like nobody’s business. It’s clear to anyone that they love each other. I’ve always carefully weighed Liam’s participation in Aidan’s care. When Liam was two years old he operated Aidan’s feeding pump. Now as a teenager he can transfer Aidan from chair to bed and put on his orthotics.  I’ll never be sure if these are the right choices or how their relationship will be effected by this caregiver role. I know Liam worries about things his peers know nothing of and should know nothing of, like seizures and side effects and hospitals. I recognize that during his childhood Liam spent an inordinate amount of time with doctors and therapists who did their very best to make that time fun for him. Our time was shaped by Aidan’s needs and I don’t know entirely how that has shaped Liam.

But scratch all that and let me say this instead; this is what I would shout from the rooftop:

Liam is a very cool kid with or without the label NT or “sib”.

He doesn’t particularly like being photographed

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Liam asks me several time a day if I want to wrestle. When I ask him, “Why me? Why don’t you wrestle with your Dad?” he replies, “Because I can’t beat Daddy.”  It’s true and I have the bruises to prove it.

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Liam is quiet and keeps to himself a lot.

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He has always been very responsible and helpful too.

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Liam will tell you that he doesn’t like swimming and or being at the ocean, but I don’t buy it one bit.

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Liam is an avid reader. My best memories of Liam as a toddler are of the two of us snuggled up together reading. Those days have made him both a proficient reader and writer. (Yes, that’s a diaper on his head. Did I mention that he’s silly too?)

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I would also shout this from the rooftop: That’s my boy! Liam rocks! Check out that awesome kid! I love Liam!

All of which would prompt Liam to shout “Stranger Danger! Who is that woman on my roof?”

You can check out the article that Liam wrote from the sibling perspective for the Pediatric Nursing Journal here.

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Remember to link up and share your sibling story at Outrageous Fortuneand stayed tuned to for the following stories:

Bringing the Sunshine (thursday)

The Fisch Tank (friday)

Love that Max (Saturday)