I’m Having Trouble Understanding How My Daughter’s Disabilities Glorify God

*Warning: This post is not pleasant.  It’s a bit sarcastic too. Some might even consider it sacrilegious and irreverent.*

John 9:2-3- As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him. (NIV)

John 11:4- When he heard this, Jesus said, “This sickness will not end in death. No, it is for God’s glory so that God’s Son may be glorified through it.” (NIV)

1 Peter 1:6-7- In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ.

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Bethany has suffered unimaginable torture upon torture in brain cancer treatments along with all the complications that  brain injuries and brain surgery can cause.

She has suffered uncountable, debilitating constant seizures and medication side effects for nearly 13 years.

Too many times Bethany has been a slave to the unrelenting rituals caused by  her Obsessive Compulsive Disorder.

Too many times she physically and emotionally drains me with her relentless  persistence  in  never ending requests for the unattainable and impossible.

Sometimes, Bethany quite literally  kicks me out of bed in the morning.  On these days I don’t even want to get out of bed because I know what trials and tribulations are ahead of me. In fact some days- too many days, I would rather just not even wake up at all!

Too many days my arms are black and blue from my shoulders to my wrists with Bethany’s pinch marks.

Too many times she pulls my hair, slaps me, and pushes me.

Too many times she violently melts down in public over something as benign as being redirected to the women’s room when she has mistakenly entered the men’s bathroom.

Too many times I have had to accept strangers’ help carrying my 140 pound kicking and screaming banshee out of a store, through the parking lot, and into the car.

Bethany doesn’t care who she hurts or what she destroys while melting down. She hit, kicks, pinches, pushes and pulls the hair of anyone in her path. She throws whatever she can get her hands on clear across the room. She chooses dangerous things to throw like vegetable cans, marbles, and rocks. She chooses  expensive things to throw like  iPads, iPods, and laptop computers.  She hurls her chosen items with out a care in the world as to whether a person might be in the path of those items.

We have had to keep dangerous items like kitchen knives and hammers hidden or under lock and key for far too many years and will for far too many more years to come.

Too many days are way too hard, dangerous, sad,  depressing, and painful.  Too many days I feel completely and utterly hopeless and helpless.  Too many days it is all I can do not to succumb to discouragement and despondency.  Too many days I can barely lift myself up out of the deep dark pit of sorrow, despair, desperation, grief, and gloom that I’ve fallen into.

Try as hard as I might I just don’t see how this life of ours would cause anyone to think to themselves, ” Wow! These people really know how to glorify God!  I want what they’ve got! If this is what living a Christian life is like,  then I want to be a Christian too!

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33 Replies to “I’m Having Trouble Understanding How My Daughter’s Disabilities Glorify God

  1. I know from my own experiences how hard this life we lead can be. I have had many similar things from your list in our life, and I have felt despair on many occasions, too. I am telling you this just so you know you are not alone. {hugs} The hardest thing in the world is to see your own child in agony and for your own child to not be able to function in this world. And yet, I believe that we don’t know how many lives we affect just by coming in contact with our lives. Remember what a difference you made at the museum? You would not have been able to do that without Bethany’s disability. Perhaps people wouldn’t say that they want a life just like yours, but you are still affecting people for the good. I know that the experience has certainly changed me and every member of my family. I would never wish it, and I may not understand why it has happened to us, but I believe that whatever life we have been given, we need to do our best and that good can come out of it. I am sure more than we know.

    1. I know you know how I feel Phyllis. I wish it wasn’t so. Thanks for your encouragement and reminder that we do have some good days and some good things are coming from Bethany’s disabilities. {hugs} back to you!

  2. I also struggle with the connection drawn between such struggles and God. While I have never considered myself extremely religious, I do want to believe in God and genuinely hope there is something else after we die. But the whole notion that God chose us to be the parents, or the kids to bear this, irks me. It makes me crazy when people say someone got better or was cured by God. What about those prayers from people that were never answered? Not everyone makes it. Not everyone recovers. I’m not a big fan of the idea that God is picking and choosing which prayers to answer and which not to. I’m not a fan of the idea that if something bad happens, “it was God’s plan.” Frankly, I get more peace from the thought that things just happen because they happen, as long as something better awaits us in the end.

    1. I obviously don’t have all the answers to our dilemmas, Becky. My only hope and words of encouragement are that there is a God who knows what He’s doing even when it seems harsh and cruel to us. Someday through faith in Jesus we will understand and everything will all make perfect sense. That is what I cling to. It’s all I have!

  3. Oh my gosh, this is why you ARE a faithful mom of nine. Being with faith does not mean you are not with questions. I think you have every right to question why? Why must your child (and the family) suffer? What possible glory are we missing?

    The thing is, sad but true, that we won’t have the answers. Until we face God and say you thought you had problems with your kids? And he will reply, You are all my kids and probably say he suffered along with us. Which may be true…but difficult to believe in the here and now.

    I am with you, I am not sure there are too many people willing to say that they want the glory that is Bethany/Boo/whomever. And I have to restrain myself from smacking them up the head when they say, God doesn’t give you more than you can handle.

    I honestly think the glory comes when you see Bethany playing with her peg board, her smile on the carousel, the way she smiles her great smile. I just wish those times outnumbered the times you had to rely on strangers. But I guess there is glory in that too, that a stranger stops and helps you.

    I am so sorry for whatever prompted this post.

    1. Thanks Kerri, for pointing out that we do have some good days! Seeing Boo’s sweet face and hearing about her accomplishments is a blessing to me too! I think it was my anxiety about Bethany’s upcoming MRI that prompted this post.

  4. Oh Sylvia, I get it sweetie. There is nothing I can say to take away your pain (and trust me, I am right up there in the “hate when people say stupid platitudes” category!) but I do agree with Phyllis. You are affecting and influencing other people. You might be overwhelmed yourself (and I can certainly see how and why) but you are an inspiration to other parents. Hugs and I hope and pray that you will have more good days than bad.

    1. Thanks Julie! I know what you mean about the stupid platitudes! Pleas keep your prayers coming. We can use all we can get! I’ve got to come over and see what Squirrel is!

  5. you are all a great family i know how you struggle day in day out but let me just say this its with god strength you get through ,i have met some of those children she is sibling to not heard one unloving word about her from them so you my dear friend must be doing a great job as their parent ,since many others have kids we over hear in public complaining about their siblings lot and most of them dont have a disabled one in their home .yes you also have the great partner to do it with as a co parent /loving husband .your husband encourages you daily as do others in prayer its with that prayer support you have lasted this long .i say we all need to keep you and families like yours in prayer until christ returns for his children.

  6. Oh Sylvia, With tears and a heavy heart I read this. What you don’t see, is how we see your love and God’s love is manifested in and through you. The angel’s that God sends to be a helper to you. I know Bethany suffers many many issues, But each and every day you Malcolm are right there with her, and working with her, and loving her. You are more a blessing to me and my walk with Matthew and his special needs than you could even imagine

    1. Teri, you and Matthew are a blessing and inspiration too! You are extra inspirational being a single mom doing it all on your own! I can’t even begin to imagine that!

  7. Lord bless you, girl. Thank you for being honest. You and those around Bethany are surely being refined in the Master’s FIRE. 🙁

    1. Marylu, your are so sweet! I do have a reputation for being brutally honest and it gets me into trouble sometimes! I want to come out of the fire now!

  8. I certainly feel so sorry for what you are going through. I wished I had the answers for you. I don’t think God delights in people suffering. Life just happens. It is too bad that you do not live near a day school for children such as Bethany. We have one here in Bluffton. That is the one that Darrell works for. It would be a blessing for you to have some free days and even more time to spend with Jerimiah. It is wonderful that her siblings are so patient with her. It could be the other way around. Take heart, keep looking up, and remember there are many prayers going up in your behalf. You should think about getting someone to take care of her for at least one day a week, so you can keep your sanity. Love you guys.

  9. I am so sorry you are having a rough patch right now Sylvia. I feel your pain and many days would rather sleep all day than deal with what lays ahead.

    I am Catholic and as you may or may not know, we don’t read Scripture as much as other Christian’s so I can’t offer you any insight into that passage that clearly seems to contradict how we live our daily lives with seriously challenged children.

    I don’t know why our lives are the way they and I don’t think God choose for us to have this life. I don’t believe he picks and chooses who will have a harder life. I think through a series of choices brought on by humans through time we end up in certain situations with certain challenges. Once we are there we must have faith God will guide us through and help us find the best path.

    Sending you love and prayers…. xoxo tiffani

  10. You… are my new sister. I hear you!! It’s a very odd place to try to wrap our minds around this often sooo-not-beautiful way God’s given us to glorify Him. But I suppose that’s why we love Kelly Clarkson’s “What doesn’t kill you makes you stronger” song! 🙂 So glad you stopped by to share this link over at Not Alone. Blessings, new friend!

    1. You got that right and so does Kelly Clarkson! Twitter is not letting me follow back. But I will visit your blog and follow in another way! Thanks for listening!

  11. Wow, friend. What an amazing post. Seriously – so honest and true. I can’t tell you how many times people have told us that God only gives special children to special parents. Really? REALLY? I’m pretty sure that’s not how it works and I’m also pretty sure that because we love our son regardless of the fact that he will try to bite us for taking away the TV, that they are not saying “hallelujah, now that’s what I need to love God, too!”
    I love this. Truly. Thank you for your wonderful, honest voice.

  12. I wish I knew the answer for you and for me, too! I have had a severe crisis of faith ever since I had my son, even before I knew he had autism. I pray for strength for myself and I also pray for a miracle, because I figure why not, right? I see people who I think are maybe not so nice with typical kids and I think why not me? Why can’t I be normal, have a normal life? But mine is not to reason why, I guess. I guess I think I’ll figure it all out in heaven, which maybe sounds simplistic but it’s how I feel. I think maybe in heaven, my son will talk to me and he’ll say he loves me, maybe he’ll say thanks! and I know you did everything for me and I appreciate it. That would be heaven, to me. Hang in there, mama.

    1. Yes Joanne! I can’t wait for the day we all meet in heaven! It is the hope I cling to! Someday we will understand. It will all make perfect sense to us! I imagine Bethany running up to me and saying, “Hi mom! This is the real me!”

  13. I found this honest post very moving – i have had some similar experiences as the Mum of 2 with special needs and I’m sure that I am not the only one who feels a little better and less alone after reading this xx

  14. You know what’s also in the Bible? A Psalm that ends in despair, not happiness. So the next time someone says that you need to have a “joyful” attitude about your daughter’s tremendous sufferings, just say “Psalm 88 biatch.”

    I love that you didn’t end this in forced hope, by the way.

    1. Thanks for stopping by and taking the time to comment, Caroline! Sometimes I just get so sick of being told that I think too negatively and don’t have enough faith. Job never really got any answers either. He decided to accept the reality of his situation and still have faith in and praise the Lord. That’s what I’m trying to do too!

  15. I have been through hard times lately (can’t specify for confidentiality of third parties). I remember asking what this has to do with glorifying God. Everything, it turns out. He uses it for the good of others and ourselves, even if we can’t see that good.

    1. Yes Anna. It’s taken me a while but I have come to that conclusion too. It’s my only hope really! I’m sorry you’re going through hard times. I can pray about that!

  16. Sylvia, I do not know what it is like going through what you describe. I don’t know what it’s like raising a child like Bethany. So, I will not claim to. I feel for you and your situation. I will continue to pray for you and Bethany for the strength and courage to endure these trials, and hopefully, for brighter days more often.

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