When My Son Asks, 'Mommy, Why Did God Make Me This Way?'

It’s the question no parent is prepared to answer: “Mommy, why did God make me this way?” This has been the year of frustration and the year of “Why?” questions. “Why was I the one born in the family with medical problems? Why do I have to be in the hospital? Why did God choose me?” Why? Why? Why? To him, life sometimes is simply not fair. In the moment the questions were asked, the only consistent response I offered was far from profound: “I don’t know.”

Flashbacks of my college religion professor, Dr. Hart, saying to me, “It is better to be honest and say, ‘I don’t know’ than to answer with an insincere answer.” Though her wisdom was present in my mind as I told my son I didn’t know the answer to his questions, I still felt like I was cheating him by not having some eloquent and perfect response.

There’s an overwhelming feeling of despair and grief as a parent when you can’t cure your child and provide comfort and answers to complex questions. Yes, in that questioning moment, I could have provided a fluff response and told my son I believe God made him perfect just as he wanted and designed. However, I thought of all the times I’ve received comments such as, “God doesn’t give you more than you can handle,” orThings happen for a reason,” etc. Though the words were well-intended, they often hurt. They feel like the easy response in a hard situation.

What I said to our son is, “Jacob, I don’t have an answer for you. Life has not been very easy for you. I do know without a doubt that God loves you. I also get confused like you when I think of how big and mighty God is and why people are born sick, why people die too soon, and why children like you have to suffer so often. Your questions are a mystery to me, too. If I could take your problem from you, have all of your surgeries and treatments and give you my organs that you need, I would in a flash, but I can’t.”

With tears in both of our eyes, Jacob looked at me eye to eye, holding my hand and said, “Mommy, I would not want you to do that. You would then have to suffer through surgeries. I can’t let you do that. You’re my mom and that would not be fair to you either.”

Children are often so much more fervent than adults. They understand compassion and humility so well. Sometimes they express it through their actions, and sometimes they express it through their words, like my son did.

Sometimes I weep. I weep for the grace-filled moments my son and I have together, for the pain he has to bear, for the complex questions there are no answers to. I weep for the life we have been given that is beautiful and hard. I am so lucky to have the family I do — my two loving sons and husband braving this journey together as a team.

I know we are not alone. I know many ask the same “why” questions. For now, we are going to stick with the “I don’t know.” For now, we will stay steadfast in our love for one another because unconditional love requires no questioning.

A version of this story originally appeared on HOPE.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

Want to help celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

Find this story helpful? Share it with someone you care about.

Related to Other

This Sex Party Is About So Much More Than Sex

The hottest party of the summer is about to change the conversation around sex and disability. “Deliciously Disabled” is a masquerade ball and sex positive party for people with and without disabilities ages 19 and over. It’s set to take place on August 14 at the Oasis Aqualounge in Toronto. News outlets have referred to the party as an “accessible orgy,” [...]
woman holding a mug

To the Mom Who Has to Let Her Baby Go

Just two nights ago I met you — a clearly emotional, distraught young lady who just had her first child. Most of the time in the world I used to inhabit, childbirth was a cause for celebration. But we’re here for a reason. I know better now. I’m very familiar with just how unfair life can [...]
Alison's son after eating

9 Pieces of Advice I Don't Want to Hear About My Son's Feeding Issues

It’s a well-known fact toddlers are fussy little monkeys when it comes to food. I had it with my older two. The endless cajoling to get them to ingest something other than chips. The patience dredged up from the pit of my stomach as we sit down for a home-cooked meal they refused to eat. [...]

The 3 Milestones We Needed to Settle Into Life as a Special Needs Family

Emily Perl Kingsley wrote “Welcome to Holland,” a beautiful poem about planning the life we intend to have with the healthy child we anticipate, and learning to live with the profound challenges some of our children have. Emily talks about planning a trip to Italy and ending up in Holland – a strange place you’re not [...]