That’s the word that comes to mind when I think about FASD. Anger.
I’m angry at a broken world where addiction runs rampant, angry that we’ve been forced to accept a new normal, angry at the numerous therapists, doctors, and authorities who’ve downplayed or disagreed with my child’s diagnosis over the years, angry at a world that judges before seeking the truth, and angry when I think about the missing pieces of my child’s life.
The child I chose with love.
Most of all, I’m angry that he will never have a normal childhood. A part of his brain is absent thanks to a stupid choice, a lack of self-control, and an unwillingness to guard his precious life before he took one peek at the world. I know this sounds harsh but this is the stuff I wrestle with often. Sometimes it eats at me, grinding away at my soul like a jackhammer grinding away at concrete. Other times, it’s sadness. A deep longing to go back in time, before his conception, and beg his birth mother to not make the choice she would eventually make.
Yes, we reel in pain over this disease. After all, that’s what it is. It’s brain damage, and the worst kind too, as far as we’re concerned. We live with the devastation of our child’s violent outbursts that have brought trauma on our family so deep that we’re not sure we’ll ever heal from it. We wrestle but, we’re hopeful. In the midst of our life, which often looks more like a pile of ashes than a life, we have a hope and a belief that our child, our son, will succeed. It began a while ago, when we embraced some powerful truths about FASD…
- It’s a permanent condition. FASD is permanent brain damage. It cannot be reversed nor cured. The part of the brain that is affected will never heal or be restored. When we finally stopped fighting against this reality, and stopped trying to fix our son’s physical condition, we discovered something revolutionary (more on that in a minute).
- It’s an uphill climb. Everyday of our child’s life will be an uphill climb, and it will be so for you if you have a child who suffers from this. You’ll fight with them, and against them. Heck, you’ll spend a ton of time fighting professionals who just don’t get this disorder. You will feel like you’re climbing the side of a mountain but never reach the summit. Honestly, it’s painful, and exhausting. Doesn’t feel very hopeful, right?
- No amount of alcohol is okay. There is no safe amount. One drop at any given moment during pregnancy can cause permanent damage. We are astounded that doctors still tell women today that they can have a glass of wine or a small drink every now and then while they’re pregnant. In our opinion these doctors should be barred from practicing medicine for eternity.
- It’s misunderstood. Recently, Kristin was watching YouTube videos on the NoFAS website when one woman stated, “FASD doesn’t get the attention it deserves because it’s not a ‘designer’ disorder like autism.” True! There is a vast misunderstanding surrounding FASD.
- It’s often judged. Even though it’s clear that we are adoptive parents (our oldest son is African-American), we have been judged. My wife, mostly, as a mother, has faced judgement even though she is not his biological mother. This stems from the misunderstanding we just talked about. It’s also inaccurate education on the realities of FASD. But….
- It’s not the end. Reading those first 5 truths feels depressing and dark. I know. I wrestle with them all the time. Every time I look at my children who are affected by FASD I feel a mixture of anger and sadness. But I’ve discovered there’s hope. This is not the end, even though it feels like it when you’re crawling through the trench. This is not a wrap on our child’s life. And, here’s why…
- It’s a fight. You and I are locked in hand-to-hand combat as parents. Yes, with our sons and daughters because, let’s be honest, the days of parenting a child suffering from FASD are dark and un-ending. But this fight is much bigger than anything we’ve seen. It’s not a fight against our children, it’s a fight for our children. It’s a fight for their heart because we love them. I love my son more than anything and that’s why I’m choosing to fight for him, even though I sustain deep wounds! I will not stop chasing down resources or finding outlets who get this disorder.
- It’s not a life sentence for you -or- your child. While this disorder is permanent, this is not a life sentence unless you let it become so. It’s your choice. The world is slowly starting to wake up to the reality of FASD and great resources are starting to take shape. NoFAS is one of those. This website is packed full of insightful and inspiring content, plus resources that can help navigate the trials of parenting a child with this disorder. One other resource that we are huge fans of is the documentary Moment To Moment.
- It can’t be cured but it can be flipped on it’s end. It’s all comes down to whether or not you choose to keep fighting for your child. The world may see my children as hopeless or damaged, but I see my child as a promising human being filled with talent, creativity and the ability to overcome this and succeed.
- The disorder can’t be changed, but the heart can be. We are committed to helping my son’s heart heal. In fact, it’s our daily prayer for him. We believe this is the answer for FASD. He will always wrestle with the side-effects of this disease. He will always deal with impulsivity and a thought-process that fails him, but, the healing of his heart is how he will beat the odds and overcome this. Nothing in this world can make us give up on him, or this truth.
As I write this post, my oldest son, who has been in and out of residential facilities for the past 5 years, thanks in part to violent behavior, brought on by FASD, is moving to a new facility even farther from our home. Many would read those words and immediately place blame on us. Frankly, Kristin and I have wrestled with that already. We’ve laid awake many nights, over the past 5 years, asking God what we did wrong, begging Him for an answer. We’ve watched the way other children (and adults) have treated our son, judged him, and his disorder. We’ve stood helpless as our son caused a scene in public or flew into a rage and hurt one of our other children or us.
Yet, we won’t give up. As we grapple with the truths above, we find power through them. We find the will to fight. As the reality of his condition and the condition of hundreds of thousands of other children like him, sink in, we find ourselves invigorated and motivated. The hope that we have is the hope we choose to seize. We could give up and allow our son to remain a statistic, or we could keep getting up, even when we’re knocked down hard, and help our son become a success! We choose the latter.
Are you raising a child with FASD? Share your story and your struggles with us.