Recognizing the Tough Moments as the Parent of a Child With Complex Needs

I was scrolling through my camera roll looking for a specific image. Amongst pictures of the first day of school, playing at the park, making a mess with his blocks, and painting a messy arts and craft project was this photo from a cardiology appointment.

It stands out — all the other images around it are bright and colorful, while this one is black and white, almost as if it’s saying “just ignore this one — it’s not that important.” When I took this photo the tech had stepped out to confirm she had the images needed for the doctor.

I remember feeling confident we had everything they needed, and that there didn’t seem to be any changes from his last echo. I also remember telling myself not to worry until we have a reason to, but all of the reasoning and common sense in the world cannot stop anxiety from creeping in.

Although I remain calm and collected, it can feel very much like this image — isolating, grey and cold. The world keeps going while you’re waiting, keeping your kid distracted and focused on getting through the procedure, helping him find comfort in the uncomfortable positions needed to get the information the team needs, while simultaneously praying that today won’t be the day you receive bad news or have to make a major change or decision.

Sometimes we do share these images; this certainly isn’t the first medical picture I have posted, but typically they’re surrounded with the smiling picture before the appointment and positioned along with the final updates from the team — “Everything is good, come back and see us in another three months and we will do it all over again.”

But those grey moments don’t go away. Rather, just like in my camera roll, they are surrounded by colorful, vivid memories that seem so much brighter next to ones like these. Ironically that can also make these grey, colorless memories feel even more vivid and out of place as it stands out so starkly.

As medical parents, we tend to not talk about our hard moments. There’s a general understanding that we just “do what we have to.” We are told that we are “strong” and “amazing” for supporting our kids through these things. It doesn’t always feel that way, but we know people mean well when they say it even if we don’t believe it, so we smile — and often deflect it back with a “thank you, but my kid is the one fighting these battles,” type of response.

But this *is* hard for us too, and if you’re feeling this way, you should know that you are not alone. It’s OK to acknowledge that this journey is hard for you too. It doesn’t mean it’s not hard for your child. It doesn’t mean you don’t love your child. It doesn’t mean that you’re not thankful, grateful or blessed. You’re a human, with human feelings.

You are more than a caregiving robot, and having tough grey moments and memories doesn’t mean your colorful ones have to be any less bright and amazing.