Featured Guest Blog: Hanging By A Thread

I’m not a great Catholic.  I’m not even a good one, but when I had my second child, I decided I should start going to mass again.  I wanted my children to at least have a foundation in something and Catholicism was what I knew.  As they grew, I reasoned, they could decide for themselves what they believed.  I took my then two year old and nine month old to mass almost every Sunday.  I struggled with my decision.  It was a misplaced struggle of conscience that rightfully belonged with my decision to vaccinate–not with religion.  I was soon to get a PDD/NOS diagnosis for my baby who descended into autism rapidly somewhere between her 15-month shots and her second birthday.   She was always behind developmentally even before that, but the final descent occurred during that period.

I was already hanging by a thread to my beliefs, just as my daughter clung by a thread to normalcy.  I had always loved God, and Mary too.  I had sought comfort in them whether I attended church or not.  I was devastated by my daughter’s diagnosis and I was angry…so angry, I quit praying.  I turned my back.  I refused to talk to God or Mary.  I had been good all my life.  I never drank.  I never touched a drug of any kind.  I never smoked. I got good grades.  I never got into trouble at school or otherwise.  I was the kid that stayed on the straight and narrow – always.  These were not hollow efforts.  That’s who I was and still am, yet this tragedy struck.  Well, you can imagine the obvious, almost obligatory, tear-filled and enraged questions that poured out of my heart following that diagnosis.  I gave up completely on God as I felt He had given up on me and my child.

Four years later, the birth of my fourth child brought tremendous grief.  My autistic child, now six and with four years of biomedical intervention under her belt wasn’t really any better.   Crippling anxiety and depression took hold of me so firmly that I couldn’t bounce back.  I tried to pull myself out of it.  Let me tell you– nothing worked.  NOTHING!  In my desperation, I shyly reached for God.   Slowly, I believe, God pulled me out.  I felt connections everywhere that I could fill another post with.  Again my brilliant (cough) mind kicked in.  Mankind did this to my daughter… not God.  He may have allowed it (ouch), but he certainly didn’t will it (sigh).  These were semantics that I eventually abandoned, but it got me through for a long time.  Later I realized, He can fix this.  He chooses not to.  He could’ve prevented this.  He chose not to.  These days, I find little difference between Him allowing this to happen and Him willing it.  It troubles me.

Despite my renewed connection, still grasping at straws, I consulted a psychic.  I read Tolle, Virtue, Chopra, Dyer, Eldon Taylor…the list goes on. I have read nearly every guru this side of nothing and they all fall flat.   Everywhere, I see platitudes and beautiful destinations of mind but there is not a map among them. I finally braved a post on my favorite guru’s page (not listed above) and was shocked when I got a response as she very rarely answers anyone.  She replied, “****, “God loves your child.”  At first I cried.  Of course, how silly of me, of course He loves my child.  I was relieved.  Next I thought, what kind of answer is that?  God loves the Shit who stole my credit card number too.  He loves extortionists, child molesters, and murderers!  Finally I realized, God loving my child is the only answer.  It is the only answer for so many reasons that again would fill another post.

I would like to write for you a wonderfully uplifting ending –one in which I make peace with my child’s autism and I am happily wallowing in God, not sorrow. Or better yet, one in which God has led me to cure her.  She is now approaching her 11th birthday, and while she has improved a little, she still falls squarely into the severe category.  There have been no miracles here except, thankfully, that thread between God and me has been repaired.  I still struggle almost daily. I yell at God.  I would kick him if I could, imagining my blow glancing off and dissipating in the wind.  Wake up, Big Guy!!!  HELP ME OUT HERE!!!!  I suspect He is helping me more than I know because if I am to be honest, there have been many wonderful things in my life, just not the recovery of my daughter from severe autism.   So I continue to give Him a little Sharpay Evans, “I WANT MORE!  I WANT FABULOUS!!!” complete with stamping of foot and screaming of mouth.

My whole self envies people who can throw themselves into their faith so completely that their fears disappear.  They trust.  They know He has a better plan.  Me, I just want my child back.  I don’t care about His plans.  She is tangibly in front of me.  His plans are not.  I want her whole.  I want her safe.  I want her with me where she belongs.  And so I yank on my thread – Hi God, remember me? – and I pray….


*Artwork used with the permission of Studio A and A

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39 Responses to Featured Guest Blog: Hanging By A Thread

  1. julie says:

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  2. madeline melo says:

    This is so real and so perfect to describe how i feel. i am like you. i cannot accept. i want my kid to converse with me. i want to have serious discussions about sex and drugs and heartbreak. i never thought autism would rob me of those experiences ….. Even something as silly as Santa and the fact that Christmas no longer seems special. everyone tells me to accept it. I’ve even heard things like i don’t love my child because i dont accept the autism. eff that!!!!! i want my kid to grow up and hang out with his friends and get in trouble for passing his curfew. i dont want him giggling in a corner over nothing except whatever random funny sound keeps replaying on his beautiful head. i dont want autism and i just cannot give in because i allowed that pediatrician to jab him with toxins his body or brain couldnt handle. i too want my boy here with me.

  3. Fr. Norman says:

    I am so proud of you. I thank your for your insights. I congratulate you for putting into words such deep feeling, and for your
    support of so many whose lives you touched by your writing and for your sensitive and caring responses to your suffering friends.
    Much loved and continued prayers.
    Fr. Norman

  4. Professor says:

    That was me, too, Ironmuffin. The good girl. No drugs, no cigarettes, no alcohol in pregnancy, etc., etc. I left Catholicism a long time ago, but continued on in a Unity church, even taught Sunday School. And I’ve read a number of the same spiritual teachers. I felt the same letdown when my son Zane died. I felt close to God most of my life, but I consciously rejected him/her/it after Zane. It was almost as though I didn’t WANT to get the message, that “whether or not it is clear to you, no doubt the Universe is unfolding as it should.” I KNEW that. But I still wanted to be mad that its “unfolding” meant that I was without my son. I got the message, anyway, and sometimes it was straight from Zane. And eventually I had to let go of the mad to make room for the incredible blessings that have come my way since then. God and I are on pretty good terms these days, but I have to say that I haven’t gotten the fears quite back down to pre-kid levels. Getting there, but not all the way there. There’s work yet to be done.

    • Ironmuffin says:

      You are so right Prof. So many things come to mind with your response. In a way I think, for me, letting go of the anger means giving in to defeat and that’s terrifying. In another way it means acceptance which I also equate with defeat (whether my thinking is PC or not) – equally terrifying. I want what I want and I do feel like a tremendous brat for demanding it especially knowing how much I already have. Recently, it’s begun to hit home just how much God does for me. I do find these days that I am often praying for peace and calm within myself (and the world over). I also find myself thanking God a lot more than ever before. I didn’t make a conscious decision to do that. It just started coming. My awareness of all He’s given has broadened and deepened substantially. Maybe I’ll get there yet. 🙂 Sending you much love because frankly, you rock out loud. <3

      • Professor says:

        Awwww, thanks, sweetie! You, too! I have something I want you to ponder on… Not with any sort of judgment, just see what answers come up for you. Do you think you would stop fighting for your daughter if you let go of the anger? Does letting go of anger really mean “giving in”? Or can one fight still?

  5. RM says:

    Thank you for sharing. I have sometimes doubted God myself during our struggles. It can be so hard and so devastating every time either of my boys regress due to PANDAS attacks. I always remind myself often that we don’t always understand God’s ways. They are not our ways. He has a plan for everyone of us, especially your daughter. I will keep you and her in my prayers. I pray you find some answer as to why she is not responding to treatment.
    In the meantime, have you ever had an immunologist check her out to see if she has an immune deficiency? It’s quite common with autistic kids, as is multiple illnesses, especially Lyme, Epstein Barr, strep and Roseola. My autistic son has strep and EBV. taking care of those things has helped reduce his symptoms alot. Autistic kids with Lyme are often non responders to biomedical treatment.

    • Ironmuffin says:

      We’ve had her tested for some of that and maybe all. It’s been 9 years of it – I tend to lose track when one thing after the other hasn’t worked. She did have Roseola as a baby. She also had the herpes virus but we treated it and retested. She no longer had it after treatment. I’m not positive about Lyme although I remember talking to a doc about that when she was about 3 and I’m fairly certain the tests were negative. Problem is none of those tests are very reliable and subject to whomever is interpreting. We have recently stumbled upon a few things that are working and we’ll play those out until they no longer work or she is way better. On my list to try is more homeopathy, Hbot and looking into Gcmaf. Thank you for the suggestions! Thank you for the prayers!!!

  6. B.K. says:

    I love this post so much!! I relate to everything you said. I struggle sometimes, sometimes I just want to be MAD. What helps me is to remind myself that I am not God. I am human and I cannot see the world from the perspective that He sees it. Yes, He does have a better plan, but we are totally incapable of knowing or understanding what that is. He sees the big picture, and I am unable to. I know at some point I will eventually understand, right now it is just not possible. It helps me when I remember that. One day it will all make sense. I just cling to my faith for dear life until it does. One day I’ll understand. Thanks for writing this! xoxp

    • Ironmuffin says:

      So much love to you BK! Your wisdom and inspiring posts always make me feel good. Thank you for being a passionate leader and an inspiration for those of us in the struggle!

  7. Julie L. says:

    The book mentioned above is free for kindle right now:

    I so needed to hear this, to see that others are questioning too, to see that others feel like prayer works for others and not ourselves or our families.

  8. Momoffour says:

    Beautiful post. Faith is not always easy, even saints struggle with it during difficult moments. On the advice of a friend, I have found immense peace by alternating my list of prayer requests with asking God what He wants of me, and opening my heart to listen for the answer. We must be patient with God too, His time is not our time.

    • Ironmuffin says:

      Yes, the Saints are always a great place for inspiration and I thank you for that reminder! And that is an excellent point – we must be patient with God too. Thank you for taking the time to respond!

  9. Mom says:

    f before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have chosen you
    …If God had told me, “This soul would one day need extra care and needs”, I still would have chosen you
    If He had told me, “This soul may make your heart bleed”, I still would have chosen you
    If He had told me, “This soul would make you question the depth of your faith”, I still would have chosen you
    I stole this from someone else but it’s about if you had a choice would you still choose your child –

    If He had told me, “This soul would make tears flow from your eyes that could fill a river”, I still would have chosen you
    If He had told me, “This soul may one day make you witness overbearing suffering”, I still would have chosen you
    If He had told me, “All that you know to be normal would drastically change”, I still would have chosen you
    Of course, even though I would have chosen you, I know it was God who chose me for you………

  10. Mom says:

    Great post.

  11. julie says:

    I humbly recommend that you read “Story of a Soul” by St. Therese of Lisieux…it is a comfort in suffering…

  12. BB says:

    Beautifully said sister, and with a truly pure heart and spirit.
    Amen !
    God is there and He will not forsake our children.

    We must never lose hope, and that is hard not to do for sure–been there and done that and that is what nearly killed me and has near totally destroyed my entire family.
    Yes, hanging be a thread indeed!.

    Keep praying!
    That’s what I have decided to do, between tears and rage and fear.
    Much love and many blessings to all of God’s Creation!

    Barbara Biegaj in Chicago

  13. Allie says:

    As one who throws herself into her faith, I can attest–the fear never really completely dissappears. We just move ahead, if we can, when we can. We struggle too. We try to dodge the arrows of the enemy, we put on a brave face and may outright lie and say we’re doing fine, but ultimately–we’re human. We screw up. We put our faith in meds instead of our Creator. We put our trust in test results rather than in the Love that made us.
    God DOES love your child. AND you. If I can venture out on a limb here, I’m going to share a little scripture. Psalm 139 says, “13 For you created my inmost being; you knit me together in my mother’s womb. 14 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. 15 My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, 16 your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.”
    God knows your heart. He knows what you are going through, whether or not you remember to bring it to Him in prayer, whether you scream at Him over the injustice of what your dear girl has had to live through. God knows what it is to sacrifice, He knows how you feel giving your child over to the care of someone else. He knows what it is to watch your child suffer. God knows and He’s got it all well in hand.
    We may never have clear answers for Autism, this side of heaven, and that just sucks. I think you hit the nail on the head here when you said that God didn’t “do this” to your girl. He didn’t. He created us for perfect union with Him; sin screwed that up; Jesus paid the price; but we still have to live with the painful results of existence in a fallen world.
    I won’t claim to know His mind, but I run to the truth of Psalm 139 when I feel weary of the battle. Please take some time to meditate on it, mom.
    I’m praying for peace and the comfort of the Holy Spirit for you today. Bless you, warrior mom. Rest, recuperate, change your battle strategy, but stay engaged. We’re with you 100%.

    • Ironmuffin says:

      No limb venturing required. All comments are welcome and appreciated! Thank you so much for taking the time to post such a thorough response. I will continue to try to reach a place of greater faith with beautiful souls such as yourself for inspiration.

  14. I have struggled with some of the same emotions. Some days I feel better, others worse. I had stopped praying, but now I just say “I am here.” I don’t ask, I don’t even say “hello”. He and I are in a weird place,but I’m OK with that and I think He is too. He knows it is all I have to give right now. But I also feel lucky, my son is improving and I tell Him thanks for that. But it is hard and I understand your point. I have been there (and continue to be at times) too.

    • Ironmuffin says:

      I agree Maryann, some days I do feel good about everything despite the struggles. Other days are just plain old fashioned hard. Thank you for validating my emotional roller coaster. I will pray that God continues to grant your child healing.

  15. Julie says:

    I understand where you are coming from. It is so hard to hang on sometimes….it is all we have but yet we hesitate. I have been dealing with something like this myself, and it is enviable to be able to luxuriate in one’s own faith even when things are unbearable. I do envy those people even as I profess Christ. Sigh! I wish it wasn’t so hard.

  16. Virginia Lee says:

    Joseph Prince, a pastor in Singappre, has really helped me to understand just how much God loves me and my children. I would encourage you to listen to him and others that are really teaching the gospel, and not mixing the gospel with law (man’s performance).
    God Bless you!

    • Ironmuffin says:

      Thank you Virginia! I will look him up. Some take comfort in rituals (man made, yes), some don’t need the fluff. I respect both points of view and I’m sure that one is no less valued over the other in God’s eyes. I’m interested to hear what this man says.

  17. Karen says:

    Wow, I completely relate. I am a bad Catholic. I do have my NT daughter attending Catholic school, and LOVE her school (the entire parish family, actually), but I can’t seem to bring myself to open up to God, again.

    I gave birth to triplets on February 22, 2006 – 2 girls and one boy. This was a miracle, since I had SO much difficulty conceiving! Then my daughter Lauren died on September 4, 2006. She was 6 months 13 days old. She was born with Hypoplastic Left Heart Syndrome – basically, she was born with only half a heart. I was, and still am, absolutely devastated. I’m angry at God. There were prayer groups literally around the world for Lauren – so many different denominations. We did everything we could. She was a 3 lb preemie, yet survived 2 open-heart surgeries. In the end, though, a crying spell led to cardiac arrest. She died in my arms.

    Over the next year my son Ryan started to show classic early signs of autism. I did not immediately recognize them for what they were. He wasn’t talking. He was a terrible eater, but was still gaining weight somewhat steadily, at the bottom of the weight scale (1st-5th %ile). He became fascinated with ceiling fans. He began repetitive behaviors. He wasn’t playing with his toys. He was avoiding eye contact. I was still a complete grieving mess – depressed, angry, etc…I was also still a new parent, and didn’t know what “typical” development really looked like. But, his surviving sister, Elena, was surpassing him in most areas. By the time he was 15-18 months old I was concerned. Yet, everyone (family, friends, pediatrician) said this was typical for boys – they tend to be late talkers. I was told not to worry. I did worry, of course.

    Fast-forward almost 6 years. Ryan’s autism is severe. He has leaky gut, is non-verbal, and been a non-responder to most of the biomedical treatments we’ve been doing for the last 3 years. He is amazing, beautiful, pure love. He is the strongest person I know. My daughter is healthy, hilarious and brilliant. She is her brother’s protector. They are my whole world.

    I have no idea how to have a relationship with God. I feel like He has forgotten about me, about my family. Sometimes I question His existence. But, sometimes I do still find myself praying – giving thanks or asking for blessings (for others – I’ve learned that it doesn’t usually work if I’m asking for myself). Even if it’s just rote habit, it can’t hurt, right? Maybe, if I do it long enough, I’ll start believing again.

    • Ironmuffin says:

      Your story touches my heart so deeply, Karen. Obviously no one has real answers for the depths of your pain but I am sending you much love. Sounds like your thread is a bit intact too? Peace to you.

  18. MelissaD says:

    Wow, that sums up my feelings almost exactly! Just change Catholic to Protestant for me… Except I was. Never missed church. Always did what was right and good. Put everyone else before myself. It is so comforting to know that I am not the only one that feels this way. I love God and believe Jesus died for all our sins. I am grateful, but incredibly resentful that He seems to have abandoned or forgotten my sweet, innocent child. All of our innocent children. I still pray, when I am not too exhausted, but really I just can’t bear to go to church anymore. I get so sick of listening to other people’s foolish, unimportant prayer requests. And then in later weeks to hear that they were answered just makes my blood boil. I have been praying for the last 8+ years for my child to get better, to have a normal life, to not suffer, to be/have a friend. And I wonder “Where is He?” I know many people have been able to cling to their faith through their autism suffering, even have it become stronger. I am just not one of those people. Thank you Ironmuffin…at least I am not alone in my thoughts.

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