When we shared our situation on Facebook I felt that I should include the cause (or lack thereof) for Jonathan’s heart defect .
Each doctor we have met with has confirmed that this is not caused by something I did or didn’t do during the pregnancy. It isn’t caused by age or genetics. As one specialist put it “for lack of a better medical term it is simply ‘bad luck.'”
Danny wondered why I felt I needed to explain this. It really is a private issue and does it really matter what the cause is?
Well, it mattered to me. I think as parents, especially as moms we feel responsible for everything that happens to our children. We take responsibility and ownership for things that don’t belong to us. Since I am already a mom to a special needs child I am intimately and well acquainted with this burden of guilt.
As humans we want to know “why?” Sometimes
we need we want someone to point a finger at, someone to blame. Do I want to know why my oldest son has disabilities? I sure do. Ultimately though, I always end up pointing the finger at myself for his disabilities.
Many years ago when it was determined that he needed glasses I was devastated. Out of all of the many other issues he had going on, this seemed relatively minor. Friends couldn’t understand why it was such a big deal but one friend got it. She said “it feels like one more crappy hand you’ve dealt him from the gene pool.”
If the reason he is disabled is genetics then I’m the one who loaded that gun. If it was birth trauma, well I’m the one who gave birth to him. Maybe I should have picked a different doctor, maybe I should have screamed louder over things that didn’t seem right to me. Maybe his disabilities are simply the consequence of me having a baby out-of-wedlock.
It sounds ridiculous and irrational. However illogical it may seem though, those are the thoughts of guilt that lurk in the back (and sometimes the front) of my mind and heart. They haunt me. If I didn’t have enough trouble forgiving myself for the role I must have somehow played in my son’s disabilities, all of those thoughts are also things that other people have suggested or accused me of over the years.
We never think it could be us who has the disabled child and fortunately for most of us it’s true. I used to think it too. I suppose I imagined that people who had disabled children were somehow special. They were somehow prepared for and somehow always had an idea that it would be them. Why? Because it generally never occurs to someone, “hey some day that could happen to me, an ordinary person.” So we try to make sense of why something happened to someone and we come up with the only logical conclusion, “they must have done something to cause this,” or even “they must have done something to deserve this.” Because if they didn’t do something to cause this; if it was truly a random occurence then that means we have no control. It means it could happen me.
I have no control over life and it could happen to me. Bad things happen to people for no good reason at all and that’s a little too scary of a thought to consider, therefore they must have done something to earn this burden.
On my own I’ve had these thoughts to explain the reason for bad things happening to my family. I already carry this burden of guilt and responsibility on my own without needing anyone else to point fingers at me.
Now I have another son who is being born with a disability. I am devastated. I feel responsible. My only job thus far in his life was to create a safe environment for him to grow healthy and strong, but somehow I have already failed him. Clearly I am not meant to bring life into this world, because I keep messing it up. What did I do wrong? I was even brave enough to ask the question aloud “what did I do wrong?” I have asked it repeatedly. Did I eat or drink something wrong? Was it my bad genes? Maybe it was simply my bad attitude, maybe I didn’t pray enough.
Of course in my mind, if I am asking these questions, then surely other people will think the same thing. Surely everyone else must blame me too.
I am like every other human on this planet, I long to be loved and accepted. I want to be absolved of the blame and guilt, whatever that absolution looks like.
The answer each doctor has given to the question of blame is: there is no blame to put anywhere for this heart defect.
Are you sure? Because if I did something wrong, maybe I can go back in time and do something differently to fix it.
Nope, nothing. I am blameless.
I have been attending a Bible study on Ephesians and one of the concepts we focused on is this very issue of being blameless.
“For he chose us in him before the creation of the world to be holy and blameless in his sight.”
Did you catch that? He chose me to be blameless before the creation of the world. This is monumental. Not only did God determine I am blameless, he determined it before the creation of the world. That means that he knew me before the creation of the world. He knew all of the things I would and wouldn’t do and chose me to be blameless with full knowledge of those things. So even if I was responsible for my children’s disabilities; even if I had done something reckless to cause them, in Christ I am blameless. I am forgiven.
I wish I could pass this truth on to all of the other mammas (and daddies) of special needs kiddos. You are blameless. God is a big God. He has forgiven you. He doesn’t hold you responsible. Forgive yourself. Give yourself a little (or a lot) of grace. God has.
Maybe you don’t know why your child is disabled or maybe you do know the reason. Why do these bad things happen to us; happen to our children? There is no good reason except that evil exists in the world.
So as I cried out to the world “this isn’t my fault” trying to absolve my own irrational sense of guilt, God has been at work loving me and showing me that I am blameless. I’m not fully there yet, who knows if I will ever fully be there. I am thankful for all of the people in our lives who have demonstrated so much to love us. Thank you for not pointing the finger of blame. Thank you for hugging us, for praying with us, for standing by us even though none of us knows what to say or do right now. We might never be able to individually say it out loud to each one of you but thank you.