Unless you are a special needs parent yourself, I bet you didn’t know there is a stigma surrounding grief for us as parents.
‘It could be worse.’
Some people think that because it could be worse, what we and our children face every day is less than what it actually is. Yes. It could be worse (and sometimes that gives momentary appreciation).
No, I didn’t lose my child. But our children, my child, have lost a lot.
Like my son Sebastian, who has a brain disease, most have lost the ability to be completely cognitive. Do you know the heartbreak of being unsure if your child understands you? Most of our children have trouble walking, talking, and eating independently. Every 3 hours, I turn on a feeding pump to feed him rather than sharing my meals with him, or making him his own.
For our family, it isn’t guaranteed that one day he will just run to the door to greet us when we get home from work. And we honestly don’t know if we will ever get to hear him say ‘I love you’ and for him to know what that means when he says it.
Like Sebastian, they lose the natural ability to see and hear on their own. They spend more time in hospitals than they do at home at times. They spend holidays in hospitals and are hooked up to machines to sustain life when they do go home.
When Sebastian was born he spent 101 days in the cardiac ICU before he went home. He had two heart surgeries while there, and a month after leaving went back for his third… but, ‘it could be worse, right?’
When you have a special needs child, your life is put on hold. I understand that all new, special needs, or parents in general typically have to ‘give up’ some things when you become a parent. Thus, is life! But for the special needs community specifically, unless your family makes less than a certain amount of money to qualify for nursing care, most likely one parent has to stay home and be a caregiver, like I did.
A parent.
A caregiver.
You learn things you didn’t think you would ever have to learn, like how to work the feeding pumps, change feeding tubes, travel with oxygen and how to read pulse oximeters to ensure your child is stable, at home.
‘It could be worse.’
Right?
Some of you are screaming at me right now, ‘WE GET IT – YOU HAVE A SPECIAL NEEDS CHILD.’
But I wonder still, do you get it?
Do you really know the depth of what having a special needs or medically fragile child means?
By no means, is it my intention to make any other parent feel like your job isn’t as hard as mine. It’s not about that. We are in this together. Parenting is hard, no matter what that looks like for your family or mine.
I recently returned to work after 18 months off caring for Sebastian. The amount of anxiety that came with that was almost too high to even consider going back to work. I remember leaving and telling our babysitter, Taylor, who is a ventilator specialized licensed practical nurse (LPN), ‘Please send me pictures while I’m at work and text me if you need ANYTHING.’
She smiled, reassured me and did just that.
But that still doesn’t take away from my 30-minute car ride to work, where I couldn’t help but cry the entire way. I was happy to feel independent again, and to have the opportunity to help provide for our family again. But the mom guilt… I couldn’t stop thinking about him. In the back of my mind asking myself if this really what was ‘best’ for our family.
It is. It has to be.
The truth is, life doesn’t stop when you have a special needs or medically fragile child. Just like any typical family, you have no choice but to figure out what your new normal is, and how to make that work. But on top of that, we are still learning how to be grateful for the sweet baby we were given, and grieving the one we expected, at the same time.
To the special needs parents, I really want to let you know there is no timeline on grief. There are no boxes to check off, no amount of diagnosis or days spent in the hospital that say you’re no longer ‘allowed’ to grieve. I want you to know I understand there is heartbreak and loss inside the beauty of a diagnosis, and you’re allowed to be honest about how that makes you feel.
I want you to know that I see you.
I hear you. I stand with you. I am you. Your child is loved. You’re doing great.”
This story was submitted to Love What Matters by Stephanie George of New Lenox, Illinois. You can follow Sebastian’s story on Instagram. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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