Letters to Me: What I Wish I Had Known about Loving a Special Needs Child

Recently, a friend asked me to write a blog post in the form of a letter. Specifically, a letter I wish I could have read at some particular point in my life. I thought about a few different points, but this one seemed the best. Knowing what I know now, what would I have said to myself, or any woman, as a young mom of a child with special needs? 

Echoing Elsa here -- dear young mom, Let it go. All the extra mess you don't need. But grace and Jesus? (Which are the same thing.) Hang on to them.

November 8, 1991

Dear younger me,

Look into the face of your little girl. That first one, having her first birthday party. (Yes, one more will be here soon. You will survive.) The one whose colic kept you up for months, who didn't sleep though the night until you made her at nine months old. (You will still regret that 25 years later. Don't do it. It's not worth the extra sleep.)

The one who started walking at nine months and climbing to the top the jungle gym yesterday. The one who has already foiled every baby gate, crib rail, and door knob safety cover ever invented. She will foil every plan you have for her, too, so you might as well get ready.

Get ready by letting go. Take a deep breath and tell yourself a few things now that will be a blessing later.

God made your child different. And amazing. And it's OK. You will not understand your child's behavior. She won't get a diagnosis for years. But you will get tons of unsolicited advice on what may be the problem. Smile. Then ignore it. It won't work, and advice given in judgment is not from God. Get on your knees constantly and ask Him what is best for your child. He knows.

Believe that her difference is beautiful. Don't accept that it is something to be ashamed of. Don't even allow those shame-mongers to get into your heart. You have to guard her heart, too, and you can't if you're not guarding the gates of yours. Tell her every day she is amazing and created for a special purpose. Tell yourself that, too. You will need it. You both will. 

So, that impish eye wink should have been a clue.

You don't have to make everyone else happy. This child will be high maintenance. You will be the one judged for this. People at church will give you those glances. You know the ones. You've given them yourself. The ones that say, “Well you're an epic fail mom. Don't you know what the Bible says about controlling your kids?”

You don't have to please those people. They have no authority over your parenting or life. Your worth as a human was established in Genesis when God said you were made in His image and it was very good. Your worth was cemented when Jesus made you into a new creation. It does not depend on the affirmation of people who should be giving you the grace of Jesus but are rather giving you the stink eye. Give them grace. And let them go.

You don't have to apologize for your child. There will be one moment in particular. A woman, in the pool parking lot, whose car door your child just slightly nicked. She will go all Kardashian drama queen on you over it. You will apologize and offer insurance information. She will not be satisfied. Don't give in to the temptation to shame your child so both adults can feel better. Look that woman in the eye. Tell her you apologized once, and you're done. You don't need to earn her approval. You can't. The rest is on her. People will try to shame you and your child for behavior that is, clearly, that of a child. You don't need to accept it. Be free. Let those people go.

You are the one God trusts for this job. He won't fail you, and you won't fail Him. No one else's expectations matter. You don't have to do this perfectly. So lighten up on your own expectations. Lighten up on your kid and listen to her. Hold her when she has no idea what's going on in her head or body. Know she's as confused as you are. And you'll both survive if you hold on to grace. Let graceless perfection go.

Eventually, you will be in the fight of your life for this child. It will change you. It will grow you. You will become a force for grace you never imagined you believed in, let alone that impassioned your life. Then again, maybe I should not tell you this. No one needs to know when the future will hold great pain. We find that out, by the goodness of God, only when we need to.

That one-year-old dynamo will be amazing. And so will you. Just love her. And hang on to Jesus.