a mother holds her childs hand

The conversation started innocently. I was at a friend’s cookout. A mutual friend and I began conversing about CCD (Catholic education). Bridget is of the age to begin CCD and learn the rites of passage in the faith. There are just a few small problems with that: 1. While she is of “age” she is not of “grade” (most children begin at 1st grade) 2. Learning (enough said) and 3. while most kids do not understand what sin is they do know right from wrong.

Do I wait for Bridget to become “aware” or enter first grade or do I enter her now (at the age she should)? Do I push her through the system because that is what Catholics do, go through the rites or do I say screw it and just let those rites pass her by. Somehow the conversation turned to my unspoken deeper issue with God.

The woman innocently said to me, God only gives special children to special parents. Unknowingly opening a wound I had held in secret. She was trying to be nice, trying to comfort and she (probably) truly believes those words. As a mom living with a special needs child this was my response:

God can kiss my ass.

Yup, I said it.

It is not that I do not love my daughter. It is not that I have an issue with Bridget having a rare genetic disorder and more special needs than President Reagan had jelly bellies. It’s because I am having difficulty rationalizing a loving God with a God who allows my child to feel such pain. A God who thinks it is okay to make a mother hold her child down for two hours while her daughter screams as they try to put an IV in or a catheter exam.

I haven’t been to Mass in a year, since June of 2015. I skipped the usual “high masses” that almost every lapsed Catholic attends: Easter, Palm Sunday, Christmas. We had been regularly attending Mass since Abby started first grade, missing a week here and there but attending with regularity. I have continue to send Abby to CCD, but I haven’t prayed or participated since the week I held Bridget down as they inserted a catheter up her vagina and flushed it with water as I physically restrained her.

Last December when she was hospitalized and almost died I didn’t call for the Chaplin, I didn’t ask her to be blessed. I was not deliberately not calling on God but He had ceased to be of comfort to me. As I held Bridget down for the IV and she screamed mommy hurt then rested in MY arms afterwards I was amazed at her capacity for love.

A God of love should not allow any of that to have happened. There is no greater good in my child’s pain. There is no grace, faith or peace. It is just senseless pain. When she survived and came home I didn’t thank God but my village of support. Those who were there for our family. Those who comforted me through phone calls, texts and any other way they could.

The poor woman I was shouting at said to me that this was the Devil talking through me. That probably wasn’t the way the conversation should have gone and not just because I am not a pretty crier. She is a woman with a very strong Catholic faith and I admire her for it. I don’t (and have never) blame God for Bridget’s health issues but I don’t thank him for her either. I wasn’t kind in my response (it’s kind of a blur).

The next morning she and I met by chance. I apologized for my behavior, that I hadn’t realized I had this unknown issue with God. She apologized for not stopping the conversation. She told me she is praying for me. I let it slide and walked away.

This weekend I walked back into Church to celebrate the life of a great man. It was here that I realized it had been a year since I last attended Mass. His wife, full of grace, spoke of their faith in God and how that faith comforted them. I know that she wasn’t just saying the words but feeling them. I heard her words and wished I could feel the same.

But I don’t.

I just don’t.


This isn’t a post shared for everyone to say they are praying for me or worry that I have gone over the edge. I am okay. I didn’t realize I had this God issue. I still have it. I refuse to believe in a God that makes me harm my child or have her face unspeakable pain. I am only sharing because I am not alone in feeling this way.

This was originally published on Kerri’s blog, Undiagnosed but Okay.

Written by Kerri Ames
I possess many titles: wife, mom, advocate, runner, Bruins fan, lover chocolate and Parrot Head. I believe you can conquer any challenge in this world with family, good friends and wine. I write about most of that and more while keeping my sense of humor in this life I never expected.

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6 Comments

  1. Thank you. You expressed what I have felt for many years. I struggle with this. But taking care of my 28yo son with multiple disabilities who was diagnosed at 27 with dementia- I struggle to believe.

    Reply
    • Thank you, Jeannie. I shared this post because I knew others had to be feeling similar. Hugs to you on taking care of your son. While my daughter is young, I understand that this is a lifelong commitment that is very different from her sister’s life. I can only imagine how difficult your journey has been after 28 years and feel your pain in that struggle to believe it is due to a benevolent God.

      Reply
  2. Kerri, I can so relate to that. I have twin autistic sons, now 19, completely different issues, and my ex left 2 months after they were diagnosed. When people tell me that God doesn’t give one anything more than one can handle, I ask them why God wanted me on anti anxiety drugs. After lots of personal work, one of my sons made some progress, and my mom said, oh, thank god! and I yelled at her, “Why does god get all the credit when something good happens, but none of the blame when something horrible happens? Where was god when I was going through all the due process hearings with the school district? Where was god when there was no information out there when they were diagnosed (1998)? Where was god helping me with services from the Regional Center? Why won’t god let me sleep more than 3 or 4 hours a row in a night?” I have lost any faith I once had in any previous divine beings I believed in, because I also belief that a good god would not make an innocent child suffer for the greater good or so that someone could learn a lesson. That god is mean and spiteful and not one I want in my life. I miss faith, but the only way anything happens for my boys is if I instigate it, even with the agencies required by law to help them. I wish I could find that comforting feeling again as well. Especially because this is a lifelong experience; one that will never end.

    Reply
    • Yes! Yes! YES!!! Thank you for understanding! I feel the same way, that God get’s the kudos but none of the blame. It is our hard work, diligence and determination not to give up which has allowed our children to make inches of success that need celebrating. Like you, I just do not understand if there is a ‘good’ God why he would allow my child to suffer more than she should. I cracked up at your response of why would he want you on anxiety medication. I always say he must have misread my resume. I know that people offer the cliche because they do not know what to say and believe they are offering comfort. I also believe those people have no freaking idea of how hard we work to keep it together. Thank you for understanding and letting me know I am not alone in feeling this way.

      Reply
  3. Valerie, thank you for your kind words. There are so many “feel good” about this difficult life out there. I share my struggle so that others without a platform will never be ashamed or feel alone when they question if God exists and if He does why he lets our children face such painful lives. Lives that are wonderful, filled with joy but balanced with their parent physically restraining them in order to help them. I am glad your son recovered and your God helped you through it.

    I hope someday to find that faith again, but at the moment I am just a mom providing the best care I can for my daughter. You can read more about how wonderful she is (and adorable, I might add!) on my blog: http://www.undiagnosedbutokay.com

    Reply
  4. Funny, but it was when my adult son was very critically injured in a car crash (his friend fell asleep at the wheel) and lay in a coma, on life support, that I realized just how much God was a part of my very being. People would come up to me in the waiting room of the NSICU, and say things like “How could God let this happen to Michael? He’s such a good person!!!” – But I remembered that God didn’t say bad things would never happen, if we believed… but he did promise that He’d be there to help us through those times. And He’s definitely been there for me, given me hope, given me strength, and ultimately, given me back my son. Challenges? Tears? Feelings of defeat? ‘Mother Guilt’? Absolutely… But my son is here, and I am blessed to get to be a part of his everyday life, and to help him through it. I’m truly sorry that you don’t have that knowledge that He is there with you and for you, every single step of the way. He cherishes your daughter, and will be just fine if she doesn’t follow the prescribed path toward Him that you grew up with. Those who come to Him come at their own pace, in their own time. I will definitely keep you and your daughter in my thoughts and prayers.

    Reply

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