Overcoming Special Needs Siblings Guilt

This past week my Moms of Special Kids support group started up for the new school year. Nafe and I went to it monthly last year and it was such an oasis for me. A watering hole in the midst of the desert. A place to learn from fellow travelers. A brief respite from my new pilgrimage.

This year big brother has to come along too because he’s not in school on Thursdays. So as we’re making the long trek down to Bee Caves I tell him, “Buddy, we’re going on an adventure to a new church. I think that you are going to love it there because Nafe and I love it, and the people there love God just like at your church. You’re going to meet some new friends and play with new toys.” The kid is psyched. I can tell he’s up for it.

That is, until we got there and he realized that he was going to be in a different room from Nafe and a different room from the mommies. That’s when the waterworks started. The protesting and the negotiating. He bravely helped me get his brother settled and then he told me that he didn’t want to do something new even if they did have animal crackers and goldfish just like at his church. I’m so glad that he is so incredibly verbal and logical and we can talk through things, but sometimes the feelings are overwhelming. I get that. His preschool teacher says, “Fight the feeling!” but he didn’t have it in him. I dropped him off and the sadness turned to outright anger when I dropped him off.

It was pretty awful. I needed to take a moment and clear my mind from the departure scene because it was very painful for both of us. I’ve never seen him like that before, but it was probably pretty normal for him to experience those feelings since it was such a new place for him. Everything in me wanted to go get him and tell him he didn’t have to be in that room and we could go home right now. And even though that’s what it appeared he needed on the surface, I knew that was not what either of us needed. My son did not need to be rescued from this hard situation. I didn’t need to rescue him.

Situations like this bring up a huge tidal wave of guilt and grief in me that is difficult to put to words. Dropping him off at a new place, with different people, dragging him along to therapy and doctor appointments, even trying to focus on him when I am so utterly distracted by what’s going on deep within my heart as it relates to his brother. I’m sure parents of typical developing kids experience similar guilty phases when new siblings come along, or other trying life circumstances steal from an iconic childhood.

I can’t tell you how many times I’ve thought, “Oh I’ve wrecked his life for good. Nafe is the sibling that will cause others to look at him differently, force him to sacrifice in ways others don’t have to, and be a burden on him well into adulthood. Surely, I’ve ruined him forever.”

It’s not true. I know that even as I type these words. It’s not true. But oh it feels as real as the fact that the sun rises and sets each and every day. I am the one who needs to “fight the feeling!”

So I go and sit in this support group and I listen to these moms who have children in middle school, high school, and all grown up. They tell story after story about their kids. I hear how their neurotypical kids have a leg up in the world because they know from an early age that it’s not all about them. They get hit with the examples of how life is hard and unfair when they are still under the protection of their parents. Then when the real world comes at ’em, they’re more than prepared, they’re armed with love and strength, resilience and hope. They have built-in compassion training because they get to practice what to do when their heart hurts on behalf of their sibling practically every single day of their growing up.

It’s not just in this meeting that I hear this. It seems everywhere I turn, I hear stories of how amazing siblings are who have a special needs brother or sister. I see it in friends who are siblings. I read it in books. It’s revealed in their lives and in their character. I know God has intended for those things to encourage me and to affirm, not just my calling, but the calling of my oldest son too.

All good. It’s just hard work to get to the good. It involves pain and loneliness and sacrifice. All things that I want to protect my son against, but really it’s what I need to be preparing him for.

I’m trying to turn this fear around and into a prayer. “Oh God, please bless him through his brother.” Absolutely everything I’m learning about, and from, special needs siblings is the desire of my heart for my big boy.

So I rushed out of my meeting and headed straight downstairs eager to see how my big kid had done. He did great. He was on the floor talking and playing with the other little boys. He even had a smile on his face when I picked him up.

So yes, it’s because of his special needs brother that he had to do yet another new thing, be at another new place instead of his own family room, and meet more new people. He did another hard thing, but man he is resilient. Even though that little voice in my head wants to say, “You’re wrecking him. Don’t take him back there.” I know that this kid is just as special as my special needs child and that God has purposed and taken his life into account from the beginning.

Then they believed his promises and sang his praise. But they soon forgot what he had done and did not wait for his plans to unfold…Nevertheless He looked upon them in their distress when He heard their cry; And He remembered His covenant for their sake, And relented according to the greatness of His loving-kindness. He also made them objects of compassion in the presence of all their captors. Save us, O Lord our God, And gather us from among the nations, to give thanks in Your hold name and glory in Your praise.” -Psalm 106

My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!

Also be sure to check out my list of Favorite Books on Disability!


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