I don’t usually use the word “normal” when it comes to my son with a life-limiting illness. I prefer “typical”, as do many other parents on this journey. But, once in awhile, we have to readjust even our idea of “the norm” for our child. Things change. And on this path, things often change in ways that bring the harsh reminder our precious angel is transitioning…moving closer to that time he or she will be watching over us, rather than us watching over him or her. With this change of the norm comes one of the hardest tasks for us parents: Accepting the new norm.

The past few months I have had to once again readjust my idea of what my son’s “norm” is. The last time such a big change in his health occurred was about 3 years ago when he began having more intense seizures that involved not only longer length of seizures, but also stopping breathing during them. With that came a permanent change in his brain wave patterns and being in nearly constant “status” (ESES: electrical status epilepticus of sleep…except his is also while he is awake, which is rare). With that change of his norm, he lost much of his already limited abilities physically and grew much more tired. It was a heartbreaking change for me to see happen.

Fast forward to the past few months. The new norm is an intolerance of feeds, a slowing of his intestinal functions, apparent decrease in circulation and/or respiratory function as he frequently is cyanotic, and developing new types of seizures. He has LGS (Lennox-Gastaut syndrome) which is a type of epilepsy with multiple different types of seizures, so this shouldn’t come as too much of a surprise. But it does.

And it hurts like hell.

ANY change in the norm of our special angel with a life-limiting illness requires us, the parent who is living every minute of our life watching our child’s life slowly decline, to come to yet another level of acceptance: The new norm.

The awful, unfair, infuriating, AGONIZING, new norm.

I have found on this journey that other parents who walk this same path are truly the only ones that understand the constant feeling of concern and sadness, be it hidden or on the surface, as we vigilantly watch and wait. As we try to accept the new norm for our child. As we try to remain strong and steadfast. So, we hold each other up (and if we don’t, we should) because the new norm is leading to that transition, whether we are ready or not. We must have that support network surrounding us, and we are beyond thankful for those that are there for us as we are thrust into accepting our child’s new norm.

The awful, unfair, infuriating, AGONIZING, new norm.