Every so often I get emails from a family who has a baby with a heart defect and in the midst of grief. Sometimes they’ve just gotten the diagnosis, others are farther along in their journey, some have just lost their precious little ones.
I remember so vividly the feelings that swept over me when doctors told me Ryan would die. I remember what it was like going in for my c-section, aware that it was very possible he wouldn’t survive two weeks. I remember him crashing on several occasions and the feelings of grief and relief when he started to recover. I remember how it felt to live with him in the hospital during two open heart surgeries when he was a toddler and preschooler and watch him near death’s door only to come back again.
For everyone that’s experienced trauma in their lives there is a before and an after. They can point to that event and say before I was like this, and after I was different. Ryan has been my most public before and after.
For every before/after, there’s a during.
In between the before and after, there’s a during. A place where you sit in grief or are just trying to survive each day. It’s then when you need others to hold onto hope for you.
My email responses to these families typically start with “My heart breaks with yours…” because I know their pain and my heart goes to the depths of it again knowing that their journey isn’t over. They continue to live in the darkness of despair. So yes, my heart breaks.
And in feeling their pain I always wish I could say something… anything… that would make that pain go away, because all of us want to protect ourselves and others from pain.
I recently shared the lessons I learned along the way with someone through one of these emails and thought it might be beneficial for someone else today who might be going through their own private difficulty.
We must learn the value of pain.
My biggest concern through my trials has been for my children and how it will affect their emotions and future actions. There are ways that our experience with Ryan has impacted our older girls that I still see glimpses of to this day.
Most parents try to protect their children from the impact of trauma; however, I haven’t met one person who hasn’t struggled, been hurt, betrayed, or traumatized in some way. Some more than others, but it’s there for everyone. We can’t eliminate pain and discomfort for our kids no matter what we do, so we must look at the pain differently.
Instead of worrying and avoiding it, I’ve learned to teach my children how to move through it, how to experience it without letting it break them. How to use it as a catalyst for growth, resilience and faith.
Pain teaches us compassion, empathy, tenacity, and a host of other attributes that happiness and success will never be able to. In teaching them, I’ve learned how to do it myself.
There is safety and comfort in knowing we can be sad without it making someone else uncomfortable. That we are allowed to grieve and cry when we need to and have fun when we need that too.
Let go of normal.
Normal doesn’t really exist! In our durings, we long for life the way it used to be. We hope for some sense of normalacy in the pain. I remember how much energy it took to have conversations with friends about mundane things – complaints about the weather or the latest celebrity news. I remember thinking, “How is any of this be important? Don’t they know my baby is fighting for his life?” It didn’t make sense. The weight of what I was bearing was too much.
For those of you living in the midst of difficulty. Your story, too, has a beginning, during, and after. You’re in the during. Taking a shower and getting through the day without losing your mind is a big win right now. You are concentrating on simply putting one foot in front of the other.
I’m here to remind you there’s an after. I know you don’t believe me now, but there’ll be a day that the rain will get on your nerves and you might even not recognize that RAIN DOESN’T MATTER!!!! You’ll get caught up in the mundane again.
But not yet, and that’s ok. Grief is different for everyone and while I highly recommend speaking to someone about your grief, I don’t recommend rushing it. There’s a season for everything under the sun, and a time to mourn is on that list.
If you remember anything at all, please remember, you’re not alone. You have your friends and family and a God who lost his son for us who knows exactly how you feel.
And you have people like me, who can reach out in the darkness because we have either been there or have spent months on the edge of the cliff hoping we didn’t topple over into it. We were so close that we tasted it and can taste just a morsel of what you taste now. We stand with you and hold your broken heart in our hands until you can hold onto it yourself.
There will be an after.
But until you get there, let us support you. Let us carry part of the load.
If you or someone you know has a child who’s been diagnosed with illness, please download this free Insider’s Guide about our experience. It contains words of encouragement and logistical information useful for getting through the during. Input your email below and it will be emailed straight to your inbox, along with my weekly-ish subscriber newsletter. If you prefer a hardcopy, you can purchase one from Amazon here.
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A fantastic post for other heart moms & dads to read, as well as anyone who is going through a tough time….to recognize that the during time IS hard, but there IS hope for after. Thanks for expressing yourself and hope so eloquently.
What a wonderful post. We often forget that there is an “after” and it is hard to think about how to survive the “during”. Thank you so much for sharing as a reminder for those going through tough times.