Parenting a medically fragile child means taking certain precautions. Many children with special needs also have compromised immune systems or can come with a complicated list of medical needs that make it difficult to participate in many “normal” activities.
So if you are the parent to this child, if you are anything like me, you likely miss out on a lot. And often, other people in our lives don’t fully understand. OR, we feel that we have to explain ourselves every. single. time. We want our friends to understand that we desperately wish to be at their child’s birthday party, or that night out, or their baby shower, or bridal shower, or whatever special moment they celebrate.
We want our family to know that we would much prefer to be able to be at that family get together, or go with them on that outing.
We want our spouse to know that we wish date night came more frequently, and we long for the days when our family did all things together instead of separating for functions in order to protect one child, and allow the others to still have a life.
But sometimes, we grow weary of explaining. Explaining that we still really want to feel included, but we may often have to turn down the invitation.
So instead of explaining AGAIN, maybe save yourself a few moments and share this with those you love instead.
Holding my little one after being intubated and in the ICU for a week.
My friend, or family member, or spouse, or child…
I’m sorry for the way I have suddenly become unreliable — at simply no choice of my own.
The way in which our house that once was, is no longer always a welcoming home.
I’m sorry that I cancel plans last-minute and at the slightest sign of her struggle…
To stay home in my pjs and hold her and watch her and just snuggle.
I’m sorry that I virtually never show up, even on the days that I desperately want to.
I wish it was like it used to be, and my absence often hurts me too.
I’m sorry for all the celebrating I miss out on — the showers, and parties, and plans.
If I could be there I would, but instead, I’ll be holding her hand.
I’m sorry for the times she is struggling. When plans change at the drop of a hat.
I’m sorry for the nights that there is no option — because a babysitter… what’s that?
I’m sorry that now life is different and we always run on her time.
My schedule revolves around her and the health of her little mind.
So, friend, I’m sorry I missed you.
I hope I can see you someday.
Just know that my love for you is unchanged through this journey that keeps me away.
So if I could ask one thing of you, it would be that you give us your grace.
Grace for the moments we miss out, and the times we do life at our own pace.
Grace for the days gone by when we’ve been unable to come around.
Grace for our cancellations and the times that we let you down.
Grace for all the commitments we will make but inevitably break.
Grace for the ways that our change of life often makes our own hearts ache.
So now that you know of our reason,
that this season of life is too much.
Would you still send us an invitation or a note, or at least keep in touch?
Because though our lives are now different, there is one thing that remains the same —
The way in which we still need you as we walk out this journey of pain.
This story originally appeared on Gracefilled Growth