Accepting the 'New Norm' for My Child With a Life-Limiting Illness

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 a while, 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 three years ago when he began having more intense seizures. Not only did these seizures last longer, he also stopping breathing during them.

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 since he is frequently cyanotic and developing new types of seizures. He has Lennox-Gastaut syndrome (LGS), 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 and agonizing new norm.

I have found on this journey that other parents who walk this same path are truly the only ones who 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 who are there for us as we are thrust into accepting our child’s new norm.

The awful, unfair, infuriating and agonizing new norm.

Follow this journey on Transitioning Angels.

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