Rejecting Joy?

Rejecting joy to stand in solidarity with the suffering doesn’t rescue the suffering. The converse does. The brave who focus on all things good and all things beautiful and all things true, even in the small, who give thanks for it and discover joy even in the here and now, they are the change agents who bring fullest Light to all the world.
 – Ann Voskamp One Thousand Gifts: a Dare to Live Fully Right Where You Are, Zondervan 2010, p58.

I have been reflecting on One Thousand Gifts over the last few weeks in respect to my spiritual life, as it pertains to my invalid state (not the “not valid” state, but my state of ailment, stuck in bed). But this particular passage has evoked quite a bit of thought on the social work/parenting aspect of my life. The part that gave me college debt and the short time I was able to work post-baccalaureate wasn’t enough to pay it off (social work, for the record, is not a high-paying career field, neither is mothering, for any of you who were wondering).

If you don’t know Ken and I in real life, you may have gotten a glimpse of our story in a few posts, but our “about me” page hasn’t been updated since the adoption (and hence, not up right now). Currently we have five children, one yet to be born (Due Palm Sunday), one born at home (the first 3 posts of the blog, written by Ken) and three given to us by their parents, chosen by the children, by God to be their forever family.

But, the challenge, the struggle, the effort to maintain joy in the suffering – to understanding, feel compassion for/with my children – is that the eldest grace children have Fetal Alcohol Spectrum Disorder. They have non-healing brain damage (and other physical issues, invisible from the outside)  that affects how their brains process information, how their bodies function, and memory is one of the key issues for our kids.

I can’t be compassionate (suffer with) my children by giving up what joy, thankfulness, grace I have. I cannot help them by suffering with them. I MUST continue to rely on seeing the beauty in them (those eyelashes are REALLY incredible, as are the hugs, the gifts of service, the willingness/desire to please) even when the impulsivity, the inability to regulate emotions, the mis-understanding just plain overwhelms them (and me).

It’s not about entering into their suffering (rejecting joy) or their inability to see the world like you or I see the world. It’s about understanding that they can’t see the world the way we see it, their interpretation is different (not wrong by the way) and helping them find tools to live a normal life as possible. My children may not understand the difference between yesterday, today and tomorrow. They may not sense the passing of time, or be able to understand how numbers on a clock translate INTO time. They may not be able to have empathy for another person and The Golden Rule may not be something I can help them understand and live. The complications are difficult. Many. Exhausting.

Often caregivers of people who have FASD talk about being “the external brain.” It is exhausting to be the external brain for oneself (written reminders of what we need at the grocery store, our to do lists, etc) but to do that for three children as well (and to be honest, 2 year olds as well need an external brain to remind them of potty times, bed times and washing hand times). Languages that I am learning to help my children find joy (instead of continual frustration) include sensory integration, picture sets, attachment, individualized learning plans, special education assistance, chronic health diagnosis, bipolar disorder, mental health, attention deficit hyperactive disorder… (this is JUST the beginning). Grace.

It’s an entirely full education entering into this realm of parenting and caregiving children with FASD. Interestingly, my mother suffered a traumatic brain injury in 2009 and that did help me understand (unfortunately for my mom) what is going on with my children. It’s like a permanent concussion – that they have to live with FOREVER. BUT, there are tools, there are supports, there are therapies to increase plasticity, there are other parents. There are numerous joys.

My girls are very artistic. All three are very musical AND extremely athletic. Some have some slight OCD (obsessive compulsive disorder) tendencies which occur when it’s time to clean up (yeah!). They love bear hugs. They can spin without getting dizzy (I get dizzy riding an elevator). They don’t use the stairs (they slide down them, face first) they think it’s flying. They are fearless (which can be a very bad thing if the external brain is busy with another child). They are strong willed and very able to figure out how to get what they want (5 yo is a whiz at climbing walls, yes, WALLS). They want to please those they love – no matter what the cost.

And, I think that is what Ann is saying, on a practical, every day level for me. It’s not about the “woe” that one feels for a child who will struggle their entire lives to keep up with the world. Being burdened with their burdens does NOT make their yoke lighter. We see past it, into the joy of enduring the cross, and we find ways to rejoice in the successes, to focus on the brightness of what they ARE able to do and accomplish – and find the tools to help them learn success without us always being there. Help them develop their external brain. To find joy in remembering to both wipe my bum and wash my hands after a trip to the washroom (we are still working on shutting the door and flushing the toilet for some of the children).

The little things count. The gigantic tantrums that last for hours (and land mommy in the hospital) are NOT who our children are. It’s the brain damage, and often, they cannot help it let alone remember it. It’s the once in awhile remembering to take out the compost along with the recycling that has to be noticed, the praise that sits in the child’s heart (not the scolding that reminds them that they are not as bright as the next student). Not rejecting their hugs because I am feeling sore, or my arms are full – not rejecting THEIR joys.

Thanksgiving lists don’t stop with just thanking God for all his wonderful gifts, but thanking our children for the blessings they are to us in six billion different ways. Somehow, hopefully, we are able to recognize Christ’s life in them. How God speaks to us through our children, whether they are gifted students skipping grades, or special needs students with a team of professionals working to build them up and strategizing on what will make them strongest. Whether they are the child with celiac disease who has dark circles under her eyes because she got a taste of gluten, or the child who wet themselves during a 2 hour “bear hug” (restrained) tantrum session. All of them are gifts. All of them are grace. All of them are graced.

The Eldest Graces

Please help me Lord to be grace-full to my babes. Remind me (when my blood starts to boil from being ignored) that it’s not always unwillingness to follow through, but usually it’s inability to follow-through, to break things into steps and remember the order of the steps (please put your laundry away is way more complicated when you think about having to get up off the couch, go into the laundry room, remember that your laundry basket is the blue one, carry the laundry basket up the stairs, open the door, take laundry basket into bedroom, remember what piece of clothing goes in what drawer, put it all away, bring basket back downstairs). And so many opportunities for distraction in what we think of as a simple task, especially with siblings and toys and other things that needed to happen that were forgotten earlier being passed on the way…

A gentle answer turns away wrath, but a harsh word stirs up anger.
– Proverbs 15:1 NIV

Help me to be gentle with my children. When my blood is boiling, help me to remember that yelling is NOT going to help their brains understand what they need to do. It is just going to confuse them more. That asking for help instead of demanding obedience will avail in what “I want” most of the time. And sometimes, my children just want to know that they are loved before they show me that they love me too. You loved us first. I ought to love them first too.

Parents, don’t come down too hard on your children or you’ll crush their spirits.
– Colossians 3:21 The Message

Oh Lord, WHY do I raise my voice? Why do I lose MY self control with them? How can I expect my beautiful children to control themselves, to speak nicely to each other, when I get frustrated SO EASILY and throw my voice around, throw offending toys in the hallway, stamp my own feet? I am not leading by example. And, of course, as I dwell on all my failings I begin to feel full of guilt – and instead of asking for forgiveness I start to make an anti-grace list in my head – and that list becomes the fall voice that earworms into my psyche. I crush my own spirit when I listen to that voice, fill me with the Spirit so that I do NOT become that voice to my children.

Summing it all up, friends, I’d say you’ll do best by filling your minds and meditating on things true, noble, reputable, authentic, compelling, gracious – the best, not the worst, the beautiful, not the ugly; things to praise, not things to curse. Put into practice what you have learned from me, what you heard and saw and realized. Do that, and God, who makes everything work together, will work you into his most excellent harmonies.
– Philippians 4:8-9 The Message

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