My final post regarding special needs parenting is inspired from a status another SMA parent posted on Facebook a few months ago. This father was very open about his struggles to maintain his faith. He was mentally keeping track of two columns, and the column for tossing aside what little Christian faith he had left, contained the most tallies.
The comments poured in. Some people, special needs parents themselves, admitted giving up their faith. Other SMA parents shared how their faith helped them come to terms with their child’s diagnosis and care. Other people commented that they didn’t have the answer; they weren’t in a similar situation and couldn’t imagine being in this man’s shoes. All these people could offer was prayer or the assurance that life as an atheist wasn’t all that bad.
I couldn’t formulate my own opinion quick enough, or short enough, for that discussion, but I did want to answer his question, because I think it’s one that all special needs parents that identify as Christian need to come to terms with at some point or another. I can only write from my Catholic point of view, but I can say than in the seven years since SMA entered my life, I’ve done a complete 180 in my spiritual life, even through I thought I was a pretty good Christian before.
So bear with me, I’ll try to organize this into seven thoughts based on the questions that kept arising most frequently on that particular thread, and what I feel aided my own spiritual journey as a Catholic. It’s not exhaustive by any means, but a decent overview that I hope you’ll see through ’til the bottom. (If you just got a diagnosis for your child, this might be a hard piece to read. I wasn’t ready to read this seven years ago. Bookmark it. It might be what you need down the road.)
1. How can a loving God allow awful things to happen to innocent children? How can SMA be orchestrated or overlooked by a loving God?
The layman’s theological answer: This is a variation of a question that has plagued mankind since the dawn of Christianity; “Why does God allow bad things to happen?”. I won’t pretend to have any new insight. St. Thomas Aquinas addressed the issue in his Summa hundreds of years ago, and in it he made clear that God does not create evil. God created everything, and it was good. Evil is the absence of good. We humans allowed evil into this world when we ate the forbidden fruit. As sinful creatures, we continue to choose to do bad things that have long-lasting effects well beyond what we can see. God allows this because 1. ) He has given us free will; we can choose to do good, or turn away from good and engage in sin. He is not a puppet master in our lives in any sense. 2.) He knows that great good can come even from great evil. That is why He allowed His son to suffer and die an awful death on the cross, because it led to the resurrection and the eternal salvation of our souls.
God suffers with us. God understands our pain as parents and He understands whatever is in the hearts and minds of our children. If our child is injured, sick, disabled or killed, it is not because God doesn’t care, it is because God knows the greater good that will come from this. (As hard as this is for us to fathom as parents.)
2. Why doesn’t God just heal our children? Where are the miracles? Why doesn’t He answer my prayers?
Miracles do happen and sometimes prayers are answered in remarkable ways, however, that doesn’t mean everything we ask of God will be given to us. But just because we don’t get the answer we want, doesn’t mean God doesn’t hear us, it just means our desires are not best for us, or our child, at this time. Sometimes children are miraculously healed, but just because our child isn’t doesn’t mean God loves him or her, or us, less. If God was a genie in a bottle, granting prayers like wishes, we’d get a lot of things we wanted, and plenty more problems we didn’t. You might think, “How could healing my child create problems?” But that question assumes your child can’t do anything great in their current state. It ties into last weeks post; if you’re so focused on how miserable you think your child is, you might not realize all the good they’re doing RIGHT NOW, even with a horrible diagnosis. Happiness and joy is not limited to able-bodied people. As special needs parents we get so caught up in how are children “should be”, and praying for “normalcy” we completely miss the opportunities God is giving us to enjoy our children and their special gifts.
3. Did God give my child SMA? Did He choose my child to have SMA? How can diseases like SMA even exist with “intelligent design”?
SMA is a genetic disease created by a gene deletion. A child of two parents missing the gene have a one in four chance of having SMA. It’s a crap shoot. Your child has SMA just like they have a particular hair and eye color, or any other number of traits. God did not design a world with disease, or sin, but as a result of our fall, we now have both. We won’t get to live in a perfect world until we get to heaven. God allows diseases like SMA because He knows the value in each human life, regardless of health, wealth, gender, or race. He knows the greater good that will come from a child being born with SMA will out weigh any struggles or discomfort he or she might face in life.
It’s good to remember that throughout history, God has often chosen the “weak” or the “lesser” to do great things. A family favorite is Bl. Herman. Consider also Bl. Margaret, or St. Catherine of Sienna who was the youngest of 23 children, or what about any of these child saints? Or heck, Helen Keller.
Updated/clarified with this great quote from Anna (see below in the comments):
“…God could use something that was going to happen in a fallen world anyway in order to bring about good for me (and the other person), but he won’t inflict something bad on them in order to make me better.”
4. Why does God allow suffering? Why must my child suffer for me to “learn a lesson”? Is this a punishment for something I’ve done?
God allows suffering because it can lead to a greater good. But we must take care when we use the term suffering in regards to our child. Again, as I mentioned last week, much of our child’s suffering could very well be our own sadness being projected onto them, when, in actuality, if her existence has always been a certain way, it’s very likely she views her challenges and pains as any other child would view his routine problems. As a Catholic, I believe that the pain I may feel, whether physical, mental, emotional can be lifted up, united with the sufferings of Christ and offered up for someone else or used for my own sanctification. God can use my pain as a special prayer. It gives my very real suffering a purpose when otherwise I would just sit around and feel sorry for myself or ruminate on how much God must hate me. Children suffering from very real pain might struggle to understand this idea, and as a parent, all we want to do is make our children comfortable.
This is where our faith is truly tested. If you’ve grown up believing in the prosperity gospel, and only hearing about the blessings God rains down on His believers, facing a diagnosis like SMA will leave you coming up empty. But check your bible; Jesus never promised us an easy road. He died on a cross and all of His original 12 apostles (except Judas who committed suicide, and St. John who died of old age) were martyred. St. Paul who authored half the New Testament was jailed, traveled through storms, and was ultimately beheaded. If this is how God allows His followers to be treated…
5. These are hard answers that require a mature faith. I didn’t want to hear them seven years ago, and after Teddy’s diagnosis, I turned my back on God for a long time because I was too angry to talk to Him. I didn’t want to hear “God doesn’t give you more than you can handle.” and I truly believed that SMA was too much, not fair to us or our sons, and not something a loving God allows to befall His children. I couldn’t fathom Job, or any of the saints I read about who joyfully accepted their crosses.
6. But thankfully, I changed. And I believe any parent who is struggling, who is only hanging on to their faith by a thread, can regain trust in God, and find hope again. But it doesn’t happen by complaining, anger, resentment, or despair. For me, as a Catholic, it was a gradual process that included:
- accepting my cross, recognizing it as my path to sanctity and heaven. I could carry it, or let it drag me down.
- seeing the joy in my disabled children. Their lives are just as full and wonderful as my able-bodied children.
- continuing to pray, receive the Sacraments and continually ask for prayer. I don’t always get what I pray for, but I see the little miracles, I see when God’s answer to my prayer is better than I expected and sometimes, we get exactly what we wanted and more.
- realizing I’m not in control of everything, but I can control to see the joy and the blessings in each day. I refuse to let the what-ifs ruin my life.
7. You have free will. You can give up Christianity. You can walk away and care for your child without prayer, without viewing your work as having any higher purpose, and you can see your child as ignored by her Creator, or perhaps as a flaw in the universe.
I, of course, would advise you to stick it out. I would suggest putting more effort into your faith that you feel possible. Go to church, pray daily, read the Bible or other spiritual book, ask people to pray for you and let them know you’re struggling. Be honest with God. Lay it all out there for Him. Consider keeping a prayer journal to document and reflect on your prayers. Lastly, find things to be thankful for, and then thank God. Literally, stop and thank Him right then and there.
It gets easier day by day, so that soon, you see where God’s working in your life, rather than wondering where He is all the time. When you know joy and goodness can be the result of anything, you see and feel them more. You’ll still have bad days and doubt, but you tackle them head on rather than letting them suck the life out of you. Know that I’m praying for you on this journey.
Now it’s your turn to link up below. I kept it to seven things, so all the old rules apply. Be sure to include a link back to this post so your readers can find the rest of the Quick Takes. I look forward to reading your posts!
Re: #4, I’m not a special-needs parent, but one thing I keep reminding myself of as I try to want to be a saint is that the people I love aren’t means to an end for God. That is, I tend to get into the mindset that if I want to become holy, bad things will happen to those I love because suffering is part of life and suffering well is part of being holy and what could bring more suffering than watching those I love be hurt? BUT. That’s not how it works, because those people aren’t just things God will use to try to force me to be holy. They are ends in themselves too, not pawns in my holiness game. So God could use something that was going to happen in a fallen world anyway in order to bring about good for me (and the other person), but he won’t inflict something bad on them in order to make me better.
Not going against what you wrote, it’s just my personal way I’ve reframed that question to remind myself of what God is truly like, instead of twisting a truth (“God can bring good out of evil”) into a lie (“God inflicts evil on innocent third parties because he wants someone else to learn something good.”)
Excellent. A very good clarification of what I was trying to say. I added a line up in my post. God doesn’t “give” our children a diagnosis like SMA as a spiritual test. I often find myself following a similar line of thought as you, i.e. if I decide to offer up some experience, God will make it much worse in order to test me.
Thank you for this explanation of #4. It has bothered me when people have tried to frame their child’s handicap as the parent needing/learning a lesson. My child with DS is a gift from God, not sent as a learning experience for me. If I happen to learn something from my experience of parenting her, that’s fine, but that’s not her reason for being. You have put into eloquent words my amorphous thought.
“We won’t get to live in a perfect world until we get to heaven… He knows the greater good that will come from a child being born with SMA will out weigh any struggles or discomfort he or she might face in life.”
Thank you. This post is excellent.
This is awesome! My favorite line: “If God was a genie in a bottle, granting prayers like wishes, we’d get a lot of things we wanted, and plenty more problems we didn’t.” So many times, I think we can all (at least me!) think that we know best when we want certain things. But what we don’t realize is that if God gave us those things, it may cause lots of problems, so He does us a great mercy in not granting us each and every little thing the way that WE want it!
Beautifully written. Thank you for sharing your wisdom.
So so so wow, Kelly. Thank you for articulating so clearly many things I’ve thought and many others I’ve never understood.
I love this post. My cousin (my godmother’s daughter) was adopted and she has spinabifida. (sp?) She has had major physical challenges, but I always saw past it to her personality and the life she brought to their home. She is now working at a Thrift Store and lives on her own in an apartment, which is a huge thing. She has found independence and is thriving.
Kelly, you did a really great job with this. These are such hard questions, and you’ve answered them with grace and clarity- not in a trite way, but in a way that reflects the deep wrestling you’ve done through the suffering you have faced. Thank you.
I’m fond of Philippians 2:12b which talks about “working out one’s salvation with fear and trembling” because I think my faith has changed as a result of Daniel. I’m not a fan of the “God doesn’t give you anything you can’t handle” mentality because God gives me those things DAILY and then hangs around to empower me to face it. He doesn’t cause SMA or autism or any genetic thing but He works in the midst of the lives of those who have them.
This is an excellent post. It is a subject I think about very often. One of my current jobs is to assist developmentally disabled adults in living independently. My favorite part of what you wrote was about seeing the joy in your child. I work in a home with four adult men who are older and have been in state care since they were very young…I have wondered about their parents disappointment when their sons – the offspring who carry on the family name, lead the family, and often inherit/oversee the family inheritance – were diagnosed with such severe mental illness. I have wondered how parents could give their children away anyway (without trying to judge them, but I just wonder how I myself would respond). I have a brother with mild MR, and have been closely involved in the lives of people with DD my entire life. One of the things that has given me comfort, too, has been to observe their joy. One time when I was particularly struggling with the ideas of God’s justice and people having mental/physical disabilities was a discovery in the book of Job when God talks about the wild horses (and other animals) no person will ever see, and how proud they are, and how beautiful. One of my favorite things to do is watch small children and even animals play when they don’t realize they are being watched. And I think about the pleasure God gets from witnessing our lives in much the same way. They have purpose, even if we don’t always fully understand its complexity.
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