In March 2018, Bethany had cleft lip surgery on her bi-lateral cleft. Four months later she had palate surgery. Her cleft palate was extremely wide and it was a difficult operation. The recovery was awful, including a readmission to  hospital due to Bethany’s unwillingness to feed.  It took a while for her to recover.

Emotionally it took me and John some time to recover as well. But we did. We thought our special needs parenting days were over and we could move on with life. Bethany would be fine now and hit all of her milestones, with maybe a 3-6 month delay due to the surgeries.

We were naive. We were wrong.

Nobody expects to have a child with special needs. Nobody plans on their child being autistic or whatever…. Disability is something that happens to other families, not your own. But when it does happen, after the shock and the grief wear off, I’m here to tell you that there is joy.

There is joy and excitement with every small step of progress and every tiny achievement. There is joy in every smile and every single word. There is joy and love and value in having family relationships with people who although limited in some respects, are still innately valuable and beautiful and worthy of love and support.

So, if you’re new to disability parenting, let me encourage you. I know there will be hard days and hard weeks. You may need time and space to grieve the unexpected change of course. But hang in there. And look for the tiny moments of joy and progress. Read all you can about the disability you’re supporting with, and let the stories of parents who have gone before you be your survival guide.