What parent has not shepherded their child through a struggle? Every parent is in this group. Preparing children for inevitable challenges while shielding them from unnecessary challenges is non-stop.
The reality I’m discussing here is different. I’m talking about a struggle that becomes the epicenter around which your family revolves. This is not an invitation to compare battle scars. This is an invitation to sit with me and connect at the heart from shared experiences and find encouragement.
In the life of every parent who is entrusted with a special needs child, there comes a moment of realization that can retain its raw nature indefinitely. What you thought your life would be must be mourned liked a death. Is this a new existence without joy or hope? Of course not. It’s the acceptance of a different reality. It is a readjustment of perspective, expectations, and priorities.
I carried guilt for mourning the life I thought my family would have. I carried guilt for being frustrated when my son could not do the things other children his age were doing.
Was it selfish to think about what I wanted and imagined? What about my children? Are not their feelings to be considered above my own? How obnoxious of me to think about how I feel and how my life has changed, right?
Actually, no. It’s not wrong for me to consider my thoughts, feelings, and experiences. It’s mandatory.
How can I function to the fullest of what God has planned for me if I cannot even tell myself the truth? Looking in the mirror and being honest can be difficult, but that is my intention with this essay. I want parents to know it is okay to experience and express feelings about their situation.
Allow me to explain how this plays out in the day to day reality of life outside of philosophical meanderings.
When you have a child who is easily overwhelmed by sensory stimuli, you do not go to the zoo or museums- even on special needs day. You only go out to eat when you know there will be minimal people around. Family and social gatherings are cut short to avoid disruption to the schedule. Parents must divide and conquer if other siblings are involved so as not to have them left out of the various experiences of life. Invitations to birthday parties and play dates will most likely be turned down until very few, if any, invitations come at all.
There can be terrible isolation in this sphere.
For years, I pressed ahead thinking that I could outsmart the atypical neurological wiring of my son’s brain- if only I could make sure he got enough rest, ate the right foods, had enough movement prior to an event…THEN, our normal life could begin.
This is an exhausting hamster wheel on which to sprint. The adrenaline will only carry you so far.
I gave up trying to muscle through. I gave up trying to make things work. I didn’t even want to try to assimilate. My world become very small.
Cocooning seems easier- like the path of least resistance, but the price is higher.
Relationships fall to the wayside. A self-centered existence sets in to the point that including others becomes a chore. Any variation to the grooves and trenches of home life requires too much effort.
Surrender calls to the exhausted parent, but it’s a lie.
Challenges in life come in all forms, many of which we do not see coming. We know in our logical mind that no day is guaranteed and no circumstance is guaranteed. A rational person should expect diversions. So, when we are forced to step into unknown territory not of our choosing, why does it feel so unexpected? We feel displaced- like we lost our way or took a wrong turn while not paying attention.
When you are in an unknown world, you look for direction from signs and experts who are supposed to know. Logic would dictate that the more experts you talk to and information you gather, the more prepared you will be. The plan will be that much more solidified.
Here’s the rub- experts don’t always agree. And then you feel more lost than ever.
When it became apparent that my son was not going to follow the typical development pattern, we began searching for answers from any expert that would call us back, respond to an email, or allow us to make an appointment. We heard everything from, “He’ll be just fine; he’s on his own timeline”, to “His case is so severe that he may never speak.” We were even told, “We think there’s something there, we just don’t have the technology to see it yet. We may have an answer for you in another five years.” He was scanned, probed, tested, assessed, and given protocol after protocol.
I kept every piece of paper from every appointment or therapy session Henry has ever had- they turned into precious clues that would be examined time and again with the entry of a new specialist or therapist.
I began doing what I knew to do- research and pray. I researched genetic disorders, dietary implications, and that elusive and slippery diagnoses, development delay.
I prayed that Henry would be able to grow and learn.
I prayed for the right people with the right answers to come into our lives.
I prayed for the patience and wisdom to know how to be the right mother for Henry.
I prayed that my marriage would not fall apart while I focused so much time and energy on one child.
I prayed that my daughter would not feel neglected or forgotten in the shadows of her brother’s challenges.
Answers did come from our team of experts, but what I had not realized was the hard truth that the answer right now may not be the answer forever. There may never be one big, final answer or explanation- just guide posts along the path. That is a tough and bitter lesson to accept.
The tension in the air of always wondering how long something will last until we have to search out the next “thing” weighs heavy. The unintended consequence is the unsettled nature that overwhelms daily life.
We saw this play out again and again when our latest “thing” would plateau or become ineffective altogether.
So, what do I tell myself? I have no other choice but to go outside myself. I connect to a source of wisdom and grace and providence that is eternal.
I have learned that discomfort is not something to be despised. Discomfort can become our teacher.
We aren’t supposed to feel at home in this world. Our real home is elsewhere, beyond the brokenness, exhaustion, and despair.
When I sense fear lingering in the peripheral shadows, I am forced to remember that the difficult times point me to a future that will never end. Until that new existence is realized, I rely on God’s promises to help make me the person I am supposed to be for eternity.
Take heart, parents, you are not alone. Our challenges refine us and serve as confirmation that this current world is not all there is.
“God is our refuge and strength, a very present help in trouble.” Psalm 46:1