We’ve been celebrating dads this past weekend. And so we should. They have a uniquely tough, demanding, relentless, and nuanced role in parenting. And when they have a child with extra needs, they bear a role that can be intimidating, confusing, overwhelming, scary, and feel relatively thankless.
I hear stories all the time from parents with children impacted by disability and/or complex health issues. Common themes in the experiences of dads include worry about their adequacy in contributing to the wellbeing of their families and concern about having satisfying connections with their spouse and children.
My hope is to encourage fathers and offer perspective about opportunities in four areas where many struggle.
Get free of your guilt.
When dad is the primary breadwinner, he may spend many hours apart from the direct household responsibilities. This is one factor in why moms and dads process their reactions to disability differently too. For example, if mom is the only one going to doctor appointments and hearing news first-hand with opportunity to ask direct questions, she will have a different awareness level. This will impact her unique timeline for internalizing things like fear and disappointment and may help her to develop discernment and confidence more quickly about specific caregiving responsibilities.
Whatever your circumstances with disability have been, it seems dads wrestle with a different type of guilt than moms do. And from what I hear, many dads are intimidated by all the wonderful things their kids’ moms are doing for their child. Dads carry concerns about present and future provision for the family. If they work long hours, they feel guilty about leaving mom alone with the children. They feel shame about having a way to “escape,” even if it is at work. Some wish they could attend more doctor appointments or wrestle to understand more of the medical or educational jargon.
Dads often want to be more supportive but feel limited.
Healing from guilt starts with taking an honest look at your personal weaknesses and strengths in your situation. (Look as closely at your strengths as you do your weaknesses.) Talk to your spouse about your feelings. Ask your child’s mom to share her view on your strengths and opportunities. (I hope both are learning to frequently express appreciation and affirmation for the value of the other’s role before skipping straight to opportunities.) Identify a couple of untapped opportunities together and consider how you can cooperate in taking a new step toward something for the family that will be mutually satisfying for parents and kids.
This could be as simple as a daily dance party or 10-minute piggyback ride. Fifteen minutes of special “dad time” with your child every day will last forever in their memory and be a heart-swelling gift to their mom too.
So let us come boldly to the throne of our gracious God. There we will receive his mercy, and we will find grace to help us when we need it most.
Process chronic grief.
Do you experience flares of anger, anxiety, or panic? You are not alone. Particularly since the pandemic, more people than ever are reporting increased stress, fatigue, strained relationships, loneliness, and anxiety-related health issues. With the added responsibilities of being a special needs parent, it is very understandable that you would be struggling with complicated thoughts and emotions.
Have you considered whether your reactions may be related to the way disability or special needs are impacting your life, your family, your future? When you are the parent of a child with high needs or someone relies on you for long-term oversight, there can be a great sense of weight rumbling in your gut. There can be many reasons behind the intense or negative emotions we feel, and it can be difficult to navigate what feels complicated or consuming. It’s worth taking time to understand the true root of our thoughts and feelings. Ambiguous, even mysterious, feelings need a safe space to breathe, to be explored.
Contrary to how many dads feel, it shows courage and strength to seek help. The enemy of your soul would love to see you stay isolated and silent on this front. Yet pushing down nagging thoughts, taunting worries, and ongoing frustrations puts you at risk of future health issues and deteriorating relationships.
Most emotionally and physically healthy parents and marriages impacted by disability are getting counseling where they can unpack complicated layers of their experience. Each person in your family is processing the experience of disability in their unique way and in their own timing. Learning to understand and respect each other is very valuable to each one’s mental health and opens doors for richness in relationships.
Dealing with grief is not easy. Thankfully, you can be processing sorrow and disappointment while also experiencing the joys and delights of fathering. When you allow yourself that vulnerability with God, yourself, and your family, you will discover a rich quality of life that comes only from sharing it. It takes ongoing attention and energy to tend to hard thoughts and emotions. But it is worth it. And it becomes a tremendous gift to your family when you take care of yourself and share your grieving process together.
2 Corinthians 6:4-10
In everything we do, we show that we are true ministers of God. We patiently endure troubles and hardships and calamities of every kind. We have been beaten, been put in prison, faced angry mobs, worked to exhaustion, endured sleepless nights, and gone without food. We prove ourselves by our purity, our understanding, our patience, our kindness, by the Holy Spirit within us, and by our sincere love. We faithfully preach the truth. God’s power is working in us. We use the weapons of righteousness in the right hand for attack and the left hand for defense. We serve God whether people honor us or despise us, whether they slander us or praise us. We are honest, but they call us impostors. We are ignored, even though we are well known. We live close to death, but we are still alive. We have been beaten, but we have not been killed. Our hearts ache, but we always have joy. We are poor, but we give spiritual riches to others. We own nothing, and yet we have everything.
You can be processing sorrow and disappointment while also experiencing the joys and delights of fathering.
Make connection with your child more important than compliance or developmental progress.
At the end of the day — and at the end of your life, or your child’s life — what will matter more to you, to your child, and to the rest of your family is not how obedient or well-behaved they were, or even how much developmental progress was made, but the quality of relational connections you enjoyed. Maybe you need to read that again?
Every parent delights in seeing their children thriving. We all hope our children will experience blessings of health and reaching their full potential in various ways. But the depth of bond we make with our children and spouses will weigh more than gifts, accomplishments, and any developmental progress that was made.
Slow down. Look your child in their eyes every day. Get to know your child and learn how to enjoy today, this summer, and this year with them. You will never get this season back.
Watch, ask, and learn: What is it like to be you?
Don’t wait to work on your relationship with your child and make memories with them. The simplest encounters you share in the day-to-day moments may become the most profound or influential ones to accumulate meaning for them. Work at it with intentionality and stay available for the cherished things, one day at a time.
And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow—not even the powers of hell can separate us from God’s love. No power in the sky above or in the earth below—indeed, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord.
Live in harmony with each other.
Prioritize the blessing of forgiveness.
Life and relationships are messy. We all make mistakes. We all have regrets. Special needs dads, like any parents, are learning and growing new perspectives about how to lead their complex families. God offers do-overs.
There is life-giving, legacy-building blessing in making amends where there has been conflict or sin in the past. It is never ever too late for reconciliation. No child or parent is too old to experience a relationship freed and refreshed by grace. That means taking a step toward offering forgiveness, even when it isn’t deserved. It also means receiving forgiveness from your child too, even when you don’t feel deserving of it.
There is so much power in a reflective, heart-felt apology. It’s a value parents do well to pass on to their children. There is power from the Holy Spirit to pour out renewal between loved ones. There is power in modeling for the next generation what it looks like to embrace a lifestyle of empathy, humility, and grace.
Offer forgiveness without expectations and allow time for healing to unfold. Just as healing from physical or developmental disabilities can be a process that takes time, so does relational healing unfold in layers. Even if it is just one layer at a time, your steps of faith toward God and others will be multiplied.
1 John 1:9
But if we confess our sins to him, he is faithful and just to forgive us our sins and to cleanse us from all wickedness.
Pay careful attention to your own work, for then you will get the satisfaction of a job well done, and you won’t need to compare yourself to anyone else.
Lisa Jamieson is a caregiver consultant, pastoral counsellor and author of popular books and Bible studies including Finding Glory in the Thorns and Jesus, Let’s Talk. She leads a weekly online discussion group welcoming caregivers in families living with disability. Lisa and her husband, Larry, are co-founders of Walk Right In Ministries, a non-profit organization building faith and community with special needs families. They live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome.