I saw a meme a while back that explains what would happen if a special needs mom fell into a hole and could not get out.
Many people come across her in this hole. A family member asks her if it is really as bad as she says it was. Her doctor asks if she is keeping a journal of her experience. Some people question whether she really fell into a hole at all. Then another special needs mom comes along. This mom cannot get her out of the hole, but she doesn’t just stand there, either. She climbs in with her, so the first mom doesn’t have to be in the hole by herself.
Being a special needs parent is hard. Not just physically, but mentally. You often feel so tired deep down in the bottom of your soul.
Not once, in almost five years, have I been able to wake up and grab a cup of coffee without first making sure that Austen is still breathing. I’m terrified that SUDEP took her during the night, even when she’s sleeping right beside me.
I’ve never been able to leave her in a room alone to play because she could have a seizure and fall, possibly hurting herself more than the seizure alone would.
I’ve held her as she threw fits and cried, not understanding why her siblings get to go on sleepovers, but she can’t. Not understanding why she has to get poked and prodded each month or lie still for frequent echocardiograms, because the medicine that keeps her seizures at bay can also mess with her heart.
I’m lucky. I have amazing friends and family who try to understand what I’m going through. They call and check in, and pray for us continuously. They drop everything to come and sit with Austen’s siblings if we have to go to the hospital. They do what they can, but they can’t always do what I need, what my soul needs, because they simply don’t get it. It’s not their fault; they can’t get it because they haven’t lived it.
When Austen was first diagnosed, I was introduced to a small group of Dravet syndrome mamas. The large Facebook group overwhelmed me at times, but this smaller group tucked me into their wings. I don’t know what I would have done without them on this journey. They get our situation, and they get everything I’m going through. They get it because they’ve been through it all.
They have ordered me dinner with a surprise dessert when Austen was in the pediatric intensive care unit because they know cheesecake can take your mind off of everything for at least a few minutes. They have argued with nurses and respiratory therapists when I didn’t have the willpower to do so myself. And they have let me scream and cuss when my frustrations reach a boiling point.
They are there for me and I am there for them.
A fellow special needs parent, even just one, is a friend I pray every special needs parent has. They are the only ones who really get it, who live it every day as well. They know my worst fears and celebrate our achievements. They worry about my health and well-being just as much as Austen’s. I do not know what I would do without my group of friends. I definitely wouldn’t be doing half as well as I am now.
Note: Dravet Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Dravet Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Dravet syndrome.
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