we are in this together

This is something that first struck me several years ago when we had a miscarriage, and now that we have a special needs child, it just keeps coming back.

There is no competition. We're not trying to one-up each other or downplay another's pain. We are there with unconditional support, because we know that's the only way any of us will get through.

We've had some rough days on our journey. When we first heard the words "Lennox-Gastaut" we were scared. One of the defining characteristics of this diagnosis is that it is unpredictable and difficult to control. That's not what you want to hear about your child's health!

The summer before the LGS diagnosis, when we were still celebrating a successful second resolution of D's infantile spasms, I met a mama at camp. This mama is a warrior, and so is her medically complex son. We shared stories of triumph and heartbreak, frustrations with our imperfect health care system, and the challenges and joys of having children with seizure disorders. I won't play up our relationship and say we're best friends, or even that I have any idea what she is going through, but I know that, if I need her, she's got my back, and I hope she knows that I've got hers.

Friends, this is a mama who won't see her son survive childhood. Seizures are just part of a long list of health concerns.

I've since connected with other mamas who are on this difficult road with us. Some of us are hopeful that our children will be able to grow up and have fairly normal lives, even if they are lives with daily medication or a strict diet to follow. Some have made the heartbreaking decision to start hospice care for their babies, and are making the most of the precious time they get to hold them in their arms.

And we are all in this together.

Can I tell you some things I have never heard? From the mamas of miscarried babies or the mamas who are preparing to say goodbye to their babies, all while they watch mine learn how to walk and find his voice and discover the world?

You could have it so much worse.

or

At least he's doing well now.

or

You are actually really lucky.

Because we are in this together. It's not a competition, because if it were, no one would win. We are in this together. From the parents watching their child's brain slowly shrink while she continues to have seizures that doctors can't diagnose or stop, to the single mama who somehow manages to be present and joyful (at least most of the time) and make sure that her daughter has good memories of her brother for the few years they get together.

We are in this together.

We advocate for each other, and for each other's babies, because sometimes it is just too hard to do it ourselves, but it needs to be done. So we step up for each other, knowing that when we are down, someone else will have our back.

Even if my child's diagnosis is "worse" than yours, I've got your back. Just like I know Amber and Lindsay and Kelly have mine, even though their kids diagnoses are "worse" than D's.

Because we are in this together.