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What You Say to Us

breathe special needsSometimes what is said seems like it’s the smallest thing. They aren’t small things. Kind words in the face of challenges are never small things.

“You’re a really good mom. You not only can do this, you are doing this.” 

Those words someone said to me at a really bad time. I felt like I couldn’t parent my son, who was going through a darkness so bleak, just this second I teared up from it and it was over five years ago. Those words came to me when I needed them and the person who spoke them never knows how for months and months on end, I held on to them tightly as I navigated the unknown world of pediatric mental health.

“You’re a great advocate.”

Those words someone said to me at a really bad time. Our daughter’s kidneys were failing and a doctor said she wasn’t “sick enough” to warrant a preemptive organ transplant. Never mind the raging itching bouts that kept her up all night making rest and learning at school impossible and the heavy schedule of meds to manage the symptoms. I’d advocated to take her to another state for a transplant when, miraculously, we got the call that her transplant was approved by the doctor.

“I know you’ll put your kids first, it’s what they need and what you’ll do.”

Those words someone said to me at a really bad time. Personal tragedy and trauma led me to make a lot of decisions and not knowing I was making the right choices at the time was really hard. If we only always had hindsight. We have to make the best choices we can with the information we have at the time. We just have to do our best, that’s exactly what we say to our kids all the time. We should learn to give ourselves the same grace.

There is so much doubt in parenting kids with special needs. It doesn’t matter the need, either. Mental health, medical, educational and social. As the kids have gotten older – and I’m getting better at this gig – I’m able to tell myself the positive words I need to hear from within when things are tough, but it is still always good to hear.

“I like that you remember to be you and you can put your kids first at the same time.”

Those words someone said to me at a really bad time. It was a time I needed to remember that I matter in the equation of running the lives of two humans who need extra time and energy and resources than typical kids.

Special needs parents can never hear positive words enough. If you aren’t getting those words from your spouse, your friends, your family, or even yourself, I want to tell you a few things if you have a minute.

I want to make sure you listen. Slow down for a minute. Take a breath…

I think you are amazing. You are strong like an ox who has to do the heavy lifting when you can barely pick yourself up. You do it though, like it’s easy to wake up and do it again the next day and the next.

Don’t pay attention to the naysayers. There’s always someone to tell us we’re doing it wrong – and this is true of any parent – but it doesn’t really matter. Do you know it’s best for your kid or family? Do you know all of the information you need to make a decision?  The naysayers literally do not matter. I trust you know what you’re doing, so go do it with the confidence.

It’s hard. It’s really, really hard. You’ll survive it though. I want to say it will get better, but that isn’t always true, is it? We know that tragedy happens. Pain and sorrow happen, no matter how much work we’ve done to prevent it. Please know whatever is hard… you will survive it. I promise. Will you be the same person? Probably not. In some ways you’ll be enriched and in some ways you will have lost a part of yourself forever because of what you’ve survived, but you will still be here. You will survive because that’s what you do.

You’re a fighter and a lover. Everyday you have to fight for the rights of your kids, it’s hard to get out of the mindset of always being the fighter. But yet, you do. You give hugs, provide comfort, you are the soft spot to land in a cruel world our kids have to navigate. You’re the boo-boo kisser, the butt wiper, fun captain, and many of you are the med provider at the same time you’re the secretary and records keeper. You’re amazingly organized.  Yes, I mean you with the kitchen counter of medical bills to go through, or the paperwork that should be read and filed but is still there sitting a few weeks later.

It’s okay to ask for help. This is sort of my crusade with our people. I’ve written about it here. And here. I am not sure why I’ve never been afraid to ask for help and I’m so happy about that because our life? Our quality of life is better because of the people who love us and strangers. It’s as much a gift to you as it is for the person who gives you help. I also happen to know that you’ve helped plenty of people, so why not let them do the same for you?

You’re kind of a badass. It kind of bothers me when people say, “I don’t know how you do it,” but you want in on a secret? A lot of days, when they say that, I don’t know how I do it, either. But you? You manage this life you’ve been given, not because you know it all, but because you never give up. I mean you literally Never. Give. Up. You know what? You’re a badass. It’s okay to own it. If you don’t own it, that’s fine, I’ll own it for you. You’re a complete and total badass.

Refer back to this list often if needed because sometimes you just need to hear the words. Know that you’ve got this. You really do.

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Artwork pictures is from Robin Plemmons, who only does commissioned work currently. Go buy some!

 

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