How to manage your special needs grief (without letting it own you)

On the Sunday between Christmas and New Year’s Day, the church celebrates the Feast of the Holy Family. (Just hold onto that point for a moment.)

Something you may not know about the Mass is that the readings proceed through a 3-year lectionary cycle (A, B, and C). The cycle changes on the first Sunday of Advent, which is the beginning of the new liturgical year. So every third year, the readings for a particular Sunday of the church year will be exactly the same. (Hold this one too…)

Often, even the music is the same, because parish music directors try to choose hymns that mirror some aspect of that week’s readings. (Hoooooold iiiiit…)

Allow me to remind you that Oscar recently turned three, and that he was baptized on the Feast of the Holy Family when he was a few weeks old, and maybe you can see where I’m going with all this.

Mass for the Feast of the Holy Family, 2018 edition, opened with one of my favorite carols, “Once in Royal David’s City.” The minute the congregation joined the organ’s beautiful swell, I flashed back to the same Mass in 2015, when we baptized Oscar, when we sang the same joyful song for the same glorious Christmastide procession on the same sacred feast.

I began to cry. Now, I’m an easy crier — I tear up at Hallmark commercials, to the point that when anything remotely emotional comes on the TV, my kids all look at me expectantly — but I was crying so hard I had to do the Walk of Shame down the side aisle and put myself back together in the restroom.

I just remembered. I remembered what it was like to be sitting in those pews, with this precious infant — the one who had not been part of our plans, who had arrived at the end of a pregnancy that nearly broke my body, whose serene little face had rested against my shoulder that day.

I remembered that baptism day, and how good and sweet and promising it felt, like the sunshine breaking after a cataclysmic storm.

And I remembered the new, much bigger storm that broke a few short months after. Sitting in the pew that day three years ago, singing that song, I didn’t know. Sitting in the pew this day, singing that same song, I did. It was a mind-bending time warp that blindsided me.

Oscar’s life is much more After than Before now. Five months before seizures, the rest of his life after. The desktop background on my computer is a family portrait from Easter 2016. We are sitting together underneath the Blessed Mother’s loving gaze — prophetic, no?

I call it “The Last Before Picture.” I can’t bring myself to change it.

Y’all, I have really made my peace with the special-needs-requiring-total-lifelong-care thing. I have, pinky-swear. So why this sudden and dramatic outpouring of grief?

Grief works in cycles and stages. It surges in waves and ebbs in whispers. When your child receives a diagnosis, there can be a profound sense of loss — the future you envisioned suddenly looks different. You grieve the child who might have been, the things he might have done, the days she might have lived. The path has diverged, and there’s no way to retrace your steps and approach the fork again, hoping for a different outcome.

Here are some things to realize about processing grief, if you are the parent of a child with special needs:

1. Acknowledge it. Don’t try to turn away from your pain, or bury it. Lean in, make friends, greet it. Let it come in for a while if it needs to. It is absolutely okay and normal to have sad feelings about your child’s diagnosis sometimes. Even for years. Even forever.
2. Share it. I hope you have trusted friends and family who are willing to listen when you need to process something related to your child’s diagnosis, even if it’s ground you’ve covered before. Grief is not a straight line, in one side and out the other.  (If you don’t have those people, I am always ready and willing to hear from you. I can listen, and I get it.)
3. Pray about it. The greatest, most powerful prayers we can offer to God are the ones that we pray through gritted teeth and streaming tears. He will never, never forsake you. Whatever grief you are feeling, He will redeem it and use it for his glory somehow. That’s a promise (His, not mine).
4. Re-integrate it. A life-changing diagnosis is not something you forget or walk away from. You can’t set it down for a while. Although you don’t have to “get over it,” you should be able to move it back to its proper place in the tableau of your life. The medical realities, however harrowing, do not define your child. They don’t tell the whole story about who she is, and who God is calling her to be. She is God’s beloved, and that’s all that matters in the end.

When has your grief about your child’s prognosis surprised you? How have you dealt with it? How can I pray for you and your family?