Stand Beside Her

Happy Independence Day to all our fellow Americans! 🇺🇸🎆🎇

Confession: it took a lot for me to post that.

I’m not very happy today, in fact, I’m incredibly sad. This is Griffin’s second 4th of July in the hospital and where our family has been apart; he’s been struggling with his pressures since the circuit change on Friday - this dominoes and creates havoc with his feeds, labs, and fluid balance; and was improving with his delirium, but after not sleeping last night and needing more steroids, he’s got the thousand mile stare back and struggling to focus on any one thing or have the general strength to even lift his arms.

I know it will get better, I know it is not a huge setback, I know people will say, "There will be other 4th of July’s to celebrate." I know people mean well when they call or text “Happy Independence Day!" I know that no one means to rub in further all that we know we are already missing out on.

But here is what’s on my heart today:

🎇 Families like mine don’t relish holidays like we used to. We are either in the hospital battling it out and trying to survive each day,  or we’re trying to figure out how to make the holiday somewhat fun and not just wildly overstimulating and miserable for our kid who struggles with sensory issues. Loud noises, food, lots of people, ect - these things get to be overwhelming for kids like Griffin quickly, and it doesn’t make your traditional holiday settings very enjoyable. There’s also medical equipment you get to pack along everywhere you go if you do have the opportunity to try and celebrate in a more normal fashion (like supplemental oxygen, feeding, and mobility) - it feels like you’re packing for a mountaineering expedition on Everest every time you leave the house, and it is an exhausting way to start a day that’s already going to be jammed packed and busy (even if it is fun), so you often opt to stay at home.

🎆We never assume after the realities we have had to live with that there will be next year, another chance to celebrate, next holiday, tomorrow - and so we don’t take today for granted. This is not a bad thing in the big picture, but it makes enduring a holiday under duress and less than ideal circumstances hard. It hurts your heart and you feel the loss.

🎇On a similar note: we do know this isn’t forever, and we try to make the best of the day at hand as it is, but it’s ok to grieve too. We can see the positives, lessons learned, and how we’ve managed to adapt in amazing, beautiful, and healthy ways, and still be sad we can’t be at the bbq or whatever with our family and friends like we used to. We can cherish life, such as it is, and its many lessons and unassuming blessings, while still feeling every bit of the loss of a life we used to know and love.

So, all this to say, this is not a post to elicits sympathy or complain about our woes, but to offer insight and a closer view into what days like these are like for families like ours (and anyone who is experiencing loss during a holiday). Sometimes (I'm raising my own hand hard here) we become too good at painting the picture of all the silver linings but not sharing our whole heart. I also hope it is a helpful starting point for those who would like to know how best to approach sensitive subjects like holidays when there is strife or loss in your loved one's life.

When you reach out to us or any family you know like ours, it’s more than ok to acknowledge the holiday. We are, truly, SO GRATEFUL that you do! But maybe instead of asking if we have any plans or offering an exuberant, “Happy *insert holiday*!” you can just send a text asking how we are, call and let us know you’re thinking of us, or just acknowledge how hard this must be. We know no one is trying to rub salt in the wound either way, but it never hurts to have someone send a message on a hard day simply saying "We miss your presence, and we see you and the road you're on."

As the song God Bless America so aptly puts it:

"Stand Beside Her And Guide Her

Through The Night With A Light From Above."