special needs mamas
If you caught my Facebook videos over the past couple weeks, you know that my nine year old son has epilepsy. With that has come a host of other issues. There are cognitive and learning struggles, behavioral issues aplenty, side effects from medication, sleep problems. The list goes on. But he's also one of the sweetest, most compassionate, funny, amazing little people you'll ever meet. He hugs everyone he meets and has a heart that loves Jesus. He loves to make us laugh and has a knack for driving us all a little crazy.
The term, "special needs," is broad and can vary depending on the situation and even location. In general however, it refers to
“ Any of various difficulties (such as a physical, emotional, behavioral, or learning disability or impairment) that causes an individual to require additional or specialized services or accommodations (such as in education or recreation) ”
I think the Mom Dictionary might define it something like this
“Any of various difficulties (physical, emotional, behavioral, cognitive, or even social) that simultaneously causes a mom to feel like her heart is being ripped out, teaches her so much, takes up a whole lot of time, leaves her with a billion questions, transforms her into a well of knowledge and a passionate, albeit exhausted, advocate, leaves her feeling both lonely and blessed.”
At least that might be a start to it.
I don't write with answers. If you're a special needs mom, I know our stories are different. I know I don't know your experience. As different as each of our experiences has been, I think we share some similar threads in our stories.
We know fear. We have feared for their lives at times. Prayed for healing, for their next breath. We have feared for their future. What will it look like? How much support will they need? We've played the game of "What if?" in our heads time and again. What if the medicine doesn't work? What if it does? What if they get too big for me to do what is required? What if they need care as an adult?
We know exhaustion. And yet we watch them sleep, thankful for each breath. It's not just a physical tired, it's an emotional weariness.
We are advocates. We've learned as we've walked this road, navigating each new turn, trying to make the best decisions we can. We've asked the hard questions and pushed for the answers. We've stood between our child and every decision, every physician, every teacher, even friends and family and bridged the gap of understanding about our child and sometimes about a diagnosis.
We've felt the sting of words as someone misunderstands our child or their diagnosis. We've wanted to educate some very ignorant people, but have chosen to educate our children about ignorance instead.
We know guilt. Every time we find ourselves frustrated or too tired or our words snap instead of soothe. We feel guilty because our other kids might not get as much of our time. We feel guilty when we're too tired to even have a conversation with our husbands or hang out with friends.
We know that each hard day is a blessing. Sometimes we forget, but no matter how hard it is, we know that we are the ones who are blessed to be the mama of this child.
We love them big because how can we not? And we love our other kids big too and we try to balance the imbalance of time so that they know they're loved too.
All of these things are our reality, the things we live each day. I don't know your situation, but I do know these things. And, Mama, it's so hard! I know it is. But I want you to know that God sees you and He sees all of your little ones. He loves them perfectly. He has a plan for your special needs kid and He has a plan for your other kids too. I don't say that lightly. It's not a flippant, "God must have a plan" statement. There is great weight to my statement. I would not attempt to tell you the will of God, outside of what He's written in His Word. I don't know what His plan is for your child or even my own. I do know that God is not on a coffee break. He is at work. He loves our kids and is pursuing each of them in the perfect, special way that they need to be pursued. How beautiful is that? He sees you too, Mama, and He loves you. Find rest in Him, even if it's while you're still moving. He is the only one who can meet our needs, who can provide real rest and real peace for us.
If you know a mama of a special needs kiddo, in my experience, the best thing you can do is to love her kids. Be a part of her village. Love on her kids like they're your own. Ask questions to understand what her life is like, what her child's life and diagnosis are like. Offer to hang out with her kids. Whether it's the special needs child or one of her other ones. She is likely overbooked by doctor/therapy appointments and school commitments. Show her grace and love her kids.
