Our Keepsake Journal is Here! 🎉

If you’re reading this, you probably wish you weren’t.

Motherhood puts us in the driver’s seat of our small children’s lives. There is immense pressure to do it right and to do it perfectly. Instagram and Facebook are lit up with other moms doing it with ease. Their babies grow up with a seemingly ideal upbringing. You want that. Your baby is beautiful and pure and deserves the whole world.

The love a mother feels for her baby is limitless. It goes far past what you can put into words. When a mother says she would lay down her own life for her child — it’s because she means it. Truly.

You grow them, nurture them, kiss their boo-boos, and wipe away their tears. You also get to see their first coos, first smile, first steps, first words . . . except when you don’t.

What happens when your child doesn’t meet these milestones? What happens when you try to put on a good face and tell yourself your child is just a bit slower and you’re okay. Really it’s fine. This is fine. I’m going to be fine. The only problem is that your entire world is crashing down around you. You feel like you’re suffocating. You’re out at sea begging someone, anyone, for a life preserver that doesn’t come . . . so you’re left to keep treading water even though you’re tired. Gosh, you’re so very tired.

When you have kids, whether meaning to or not, you almost outline their futures.

You think about the sports they might play, friends they might make and the conversations you will have with them. When it becomes a thought that those things might never happen for your children, it can be devastating.

If your whole world existed inside a snow globe, it feels like someone took that globe and smashed it against the ground.

Guilt . . . it’s creeping in.

How can I feel this way when I still have my beautiful baby here to snuggle? Remember: nothing has changed. Your baby is still your baby. But, just know that what you’re feeling isn’t selfish. It’s mourning. Mourning the life you thought you and your child were going to experience. It’s OK to feel sad, mad, and empty while you grieve that loss. Any parent in the world would feel that sting. You might tell yourself that things could be worse, and it’s true—things can ALWAYS be worse. That doesn’t make your feelings any less real or justifiable. It’s OK to validate your feelings and acknowledge that yes, this is extremely difficult.

It’s hard to describe to the parent of a neurotypical child just how isolated you feel. Friends don’t understand why you have a hard time meeting them for a playdate when going to that playdate alone means you will spend the majority of the time praying there’s no meltdown. Overstimulation from all the sensory stimuli can send your child into a tailspin that you don’t want your child to have to experience.

You worry about things other parents don’t.

You notice that if your child’s disability isn’t visible from the outside, it may not be readily embraced by others. Since your child looks “typical” it can lead to others saying that what’s happening is a result of bad parenting or that it doesn’t exist at all.

What feels the most isolating is seeing all the seemingly neurotypical children everywhere you go. And realizing what separates your child from that child is just . . . luck.

What you wouldn’t give for your child to not have to struggle. To see him go outside and play freely with other kids, to see her have conversations, to see him live a life free of anxiety, and to see her get to be a care-free kid. To not have to go therapy and instead go play at the playground.

But most of all—every one of us wants our babies to be happy. Happiness. It’s the number one goal. For them to live life as carefree as possible with smiles on their faces. Isn’t that a beautiful image? So try hard to focus on that as your end goal each day. Forget what everyone else is doing and don’t compare your child to another child. Focus your energy on positivity.

Find your tribe. It’s so important to surround yourself with people who “get it”. People who do not judge and do not tell you what you should be doing. People who are just there to be good human beings. The last thing you need is someone yapping in your ear that “he’ll grow out of it” or “if you just disciplined better this wouldn’t have happened”. Because words hurt and it’s so unnecessary for you to have to deal with any of this. In the words of Elsa, just let it go. Or better yet, let them go.

Join local groups for parents of children with your child’s diagnosis. Join Facebook groups or other online groups, too. They’re a wonderful way to talk to other moms in the know and bounce ideas off one another. Bonus, you don’t even have to leave your house to chat. Because we know that seems impossible some days.

Talk to other parents in the waiting room of your child’s therapy appointments. They probably have some good advice you could use and could relate to what you’re going through.

Try to get out for some kid-free time with your partner or a friend. Please try. I know it’s hard and can seem impossible most days, but just try. You’ll feel so much better getting to just be you for a small chunk of time. Being able to unwind, breathe slowly, and de-stress is so critical for happiness. Because you matter, too. Even though this whole journey focuses so much on your child, you also matter. You are important. And you keep this ship afloat.

Do not forget what you’re doing right now is what’s important.

Your sweet child is where your life is. Nobody plans for this and life sure does like to throw curveballs. Ever heard the saying “we make plans and God laughs”? Boy, isn’t that truth? No matter what, keep going forward. Each day brings a new opportunity to learn and grow . . . together. You and your child.

Sometimes love isn’t a spoken word, sometimes love is so pure and so unbreakable that you can feel it in your bones. You know your baby loves you. You can feel it. So although he or she may not be able to say it back, know that sweet little boy or girl does love you—very, very much.

And I know that if this is something that you’re dealing with in your life, that you’ve got a little bit of mama bear in you.

It’s time to hear her roar.

You may also like:

Please Don’t Write Off a Strong-Willed Child—Recognize the Beauty Behind Her Passion

To the Anxious Mom, You Are Not Invisible

So God Made Special Needs Parents

So God Made a Mother book by Leslie Means

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So God Made a Mother's Story Keepsake Journal

Maria Hilger

I'm a wife and mother to three small children. When I'm not chasing after them, I write. I hope to help and empower others through my writing.

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