It’s completely normal to feel grief following your child’s diagnosis. Even though your child is alive, there is still a grieving process you will go through as your come to terms with the loss of the typically developing child you thought you had. The good news is, you don’t need to stay stuck in grief. Your life, and your child’s, can be one of joy regardless of their diagnosis.
When you were blessed with your child, you probably envisioned all sorts of things for him or her. A difficult diagnosis changes all that. The future doesn’t look the way you expected anymore. So while you’re not mourning the death of a person, you are going to mourn the loss of the perfect life you envisioned for your child. And while we normally associate grieving with death, most people don’t realize that becoming a special needs parent will entail a similar, not identical, grieving process. Know that everything you’re feeling during this process is okay and normal for what you’re going through.
There are five stages to grief: shock, denial, anger, bargaining and depression. You’ll probably go through all of them, in that order, but some parents maybe get stuck in one stage longer than another. You may bounce back and forth for a bit – it’s okay! Grieving is not a linear process and everyones journey looks different.
You’ve just been blindsided by your child’s diagnosis and your emotions are probably all over the place ranging from numb to sobbing. Take some time off to deal with the news. Most jobs give time off when a family member dies; they recognize a person needs time to grieve. Even if you can’t take “official leave” try to step away from work and your responsibilities for a few days. It can help to designate a friend or family member to update people either in person or online regarding the situation so you don’t need to keep talking about it to people during this early stage. That person or someone else close to you can also come to doctor appointments to record and gather information so you don’t need to worry about forgetting anything. No matter what emotions come to the surface, go easy on yourself.
It can be hard to accept our child’s diagnosis and the limitations that come with it. Its easy to convince ourselves that somehow a test is wrong, or our child will out grow something, or that we’ll cure his or her condition on our own with some new miracle drug or alternative treatment. Since we equate disabled with bad, we refuse to allow the term, or any label to be attached to our child. While we should never give up fighting for our child to receive the best care and treatment, we need to accept that we are not in control of the situation. When we are in denial, we are preventing ourselves from seeing that a joyful life is possible, even if it looks completely different from the one we envisioned, and even if it is shorter than we’d like. Rather than settle into denial, we need to step out in faith and hope, even when the future seems scary and uncertain. God is in control no matter what.
You’ll recognize when you’ve hit this point, but what might surprise you is what triggers your anger. You might find the most well-meaning or innocent things will set you off. Try to get your anger out in healthy ways, such as exercise, so you don’t lose your temper at family members, friends, doctors, etc. Apologize when necessary but don’t beat yourself up. This is part of the healing process. People should understand why you’re not yourself right now. Again, when someone dies, we don’t question the behavior of close family members. Extend yourself the same grace you’d extend to others who are grieving. Its easy to feel justified in our anger and stay stuck in this phase, but staying angry doesn’t make for a joyful life for you or your family. Be honest when anger rears its ugly head, yes, this isn’t fair, but then work to move on in peace. Adoration and confession are wonderful sacraments to help overcome anger.
Don’t fall into the trap of thinking you can bargain with God for a different outcome. Your child’s diagnosis isn’t your fault and while God can certainly cure your child if He wants, He might know that your family doesn’t need a cure to be happy and live out His plans for you. Trust in God, don’t try to reason with Him. You can ask that this chalice pass you or your child by, but if it does not, don’t miss the opportunity to love and enjoy the child you have right in front of you.
You can stay stuck in this stage of grief for a long time. You may even need professional help to pull yourself out, and that’s okay. Recognize that you need to do whatever it takes so you can be the parent and caregiver your child needs. Its normal to feel depression as part of the grieving process, so don’t view yourself as a failure for feeling this way about your child’s diagnosis. Be kind to yourself, and make sure you’re meeting your basic needs. Find a friend to listen and support you. This is the last hurdle before acceptance and it may be the tallest for you overcome. You don’t need to snap out of it instantly, but don’t allow it to become your new normal. Continue to receive the sacraments and if you are advised by your friend, pastor, or spouse to seek counseling, don’t hesitate to do so.
After all those stages you will be emotionally spent and exhausted, but when you work through all the stages of grief you can arrive, finally, at acceptance. There may be times, especially following a change in your child’s condition, when you might revisit some of these stages again. Recognize them as a temporary setback, not a new normal.
Acceptance starts with a choice to leave the grieving process behind. Acceptance doesn’t mean resignation to a dreary life. It means that just because life doesn’t look the way your planned doesn’t mean it won’t be okay, in fact, your life will be better than okay. You life will be filled with joy if you trust that God’s plan, whatever it may be, will be good. It may be hard, disappointing, and there may be great sadness, but your life with your child can be just as wonderful, even with his or her diagnosis. Every day, look for the joy; look for what you can be thankful for. What makes your child happy? What makes them smile? What brings them comfort? Thank God for those things. When you look for things to be thankful for, you will soon start to see more of the blessing in your life, instead of the challenges.
If you want more information on over coming grief and finding joy as a special needs parent, check out our founder’s book Better Than OK; Finding Joy As A Special Needs Parent. You can also join our Accepting The Gift Facebook group to connect with other parents who can offer the listening ear you may need. This post is also available as a video on YouTube.