You’ve just heard words that will change your life forever.
Maybe you were sitting in a doctor’s exam room with your 7-year-old, maybe you were in the rush of emotion in the birth center, or perhaps you were at your 20-week ultrasound and watched the technician’s face change as she rolled the equipment over your bulging tummy.
Possibly you’ve heard these words before, but probably not, and either way, you’ve likely never considered how they would pertain to your own life. Your life, your baby’s life, your family’s life.
Today, you were given a diagnosis.
With a diagnosis usually comes a prognosis. As mamas bursting with love and protection, we want to know everything, right now. What caused this diagnosis and what will it affect? Will it get better or will it get worse? What will our days look like now? What will our years look like? What will my child’s life look like?
If you’re like me, today you are confused, grieving, overwhelmed, maybe even devastated.
There may also be glimmers of two other emotions swirling within you: hope and determination. And I urge you to cling steadily to those as you navigate the uncertain days ahead.
My fellow mom, I was you four years ago, and today I want to tell you…
It’s not your fault. Whatever the circumstances, remember this: your precious child was created miraculously by God and in His image, to be JUST as He created him or her.
Let other people help you. No one can shoulder this weight alone, and you don’t have to – the people in your life who love you and who love your family want to help you in whatever ways you might need. Let them. It is such a gift to them, and to you.
Give a lot of grace. Give grace to those people who may not know the right words to say, or say anything at all. Give grace to those people who may not do the right things, or do anything at all. Sometimes, what is in their hearts becomes stifled by fear or uncertainty. But mostly, give grace to yourself. Forgive yourself, let go of guilt, and someday sooner rather than later, remember to laugh.
Find your new community, but stay connected to your friends. Your new community of special needs parents will be invaluable to you, and I hope that you can begin reaching out as soon as you’re able. They are strangers now, but will eventually feel like family, and they will be the only ones who can fully understand much of what you are experiencing, as well as offer encouragement and advice on everything from IEPs to physicians to how to field questions about your child’s condition. But don’t give up on your current friendships. They may not be able to understand, firsthand, a big piece of your life now, but if they’re true friends, they want to try, because they love you and want to support you.
Don’t give too much weight to evaluations. As parents, we are often led to believe that those developmental evaluations are essential criteria for our child, but there is one thing that can never be measured, yet is the most important: Love. Indeed, the transforming moments of big love that you and your child will share are the real milestones.
If you’re like me, today your mind is likely consumed with limitations. You will be thinking of the Won’t be Able Tos and the Might Nevers .
But there are some things this diagnosis won’t limit: your love and your hope. And with that love and hope, we can allow our children to amaze us with what they can do, instead of what they might not be able to. Those limitations? It is up to your child alone what will limit him or her, and there will be far many more Cans than Can’ts.
Mama, today you are overwhelmed and wondering about your family’s future. This is not what you expected and not the way you envisioned your life going. This is definitely not what you had hoped or planned for your beautiful baby. Go ahead and grieve for this, and don’t feel badly for your tears.
I can’t promise the days or years ahead won’t contain seasons of very hard, but what I can tell you this: your child’s life is beautiful and worthy of celebration.
Today, you want to know what is going to happen. Here’s what will happen. My friend, you will love so much bigger than you ever thought possible, and you will find strength you never knew existed deep within yourself. And your family’s life will be good – yes, it will. Life will be so full of joy when you look for the good, redeeming your struggles by discovering the pieces of good that are both shining out and also tucked away for you to find.
This life – with this diagnosis, these new words that you may not know how to pronounce yet – may not look like the life you originally envisioned, but it will be an extraordinarily beautiful life filled with immense love.