“Be exalted, O Lord, in your strength; we will sing and praise your might.” – Psalm 21:13
the very next verse
“My God, my God, why have you forsaken me? Why are you so far from saving me, so far from my cries of anguish? O my God, I cry out by day, but you do not answer, by night, but I find no rest.” – Psalm 22:1-2
“Robert, your ‘normal’ would destroy most others!”
That statement that a colleague emailed me packs so much truth about our lives inside those seven words, and even though we live it every single day, for every single hour, even we can forget it. But that’s what ‘normal’ does, it slowly grinds down the rough edges that remind us of our struggle until we are used to it, until we are dull to its pain. We forget that what we are doing day in and day out in caring and raising Reagan is hard, how it is impossible to do everything for her each day. We have to prioritize what is required for her (meds, formula, food, sleep) with what we need to help her work on (way too much to list in parentheses) along with loving her and having fun and trying to give her the ‘normal’ playtime any other two year old would have.
There isn’t enough time each day to do all the things we are told to do, so sometimes the homework we are given by each therapist (there’s five) doesn’t happen. So when one of them asks their seemingly innocent question of “have you been working on this or that” and we haven’t, we feel like failures. We feel like failures because we have homework to help Reagan simply catch up with her peers, but there isn’t enough time or we don’t have enough energy to do everything. And that can ruin our day faster than anything and it brings us to tears and our knees under this crushing weight.
But here are a few truths we have to remind each other of almost every day: 1-God placed Reagan in our family for a reason, 2-as parents, we are juggernauts, and 3-we are not alone even though we feel completely isolated. And that second truth is important for us to remind each other, because when we feel like we have failed, we need to remind ourselves that we do not have any equals amongst those we know.
[Did he just say that? Oh, that sounds so prideful!]
It’s not prideful, it’s factual. It’s like a high schooler complaining they have no free time to a single mother of five – it’s two completely different playing fields. Truthfully, we don’t want to be on this field or have to be a juggernaut–but we have to be because we have been called to do so.
And we love Reagan and are going to the ends of the earth for her.