When your loved one has a rare disease, or really any disease, it does not only impact the child but your entire family.

Everyone, rightly so, tends to focus on the person with the ailment. Be it rare disease, autism, mental health, cancer or insert your personal struggle here.

I wrote years ago about what an autism family might look like. One line, that I still feel a little guilt about was: “A parent tries medication, therapies and any other technique to try to calm their child’s explosive temper. A sibling hides in their room hoping the storm will pass soon.” Even the parent can sometimes, unintentional overlook the sibling.

It is not just the parents, but the siblings, that are so busy caring for their loved one who is sick that they neglect to take care of themselves and their relationships.

Our family has been extraordinarily lucky to be surrounded by our villagers. The brothers from other mothers, who I can text and tell them that David really needs to go for a walk with the dogs or a night without us. I have dear friends that when I text that I cannot do this anymore, call and make sure I am coherent, they schedule girl weekends or time away from Bridget where I can just be Bridget.

All of our villagers, also accept when Bridget must attend with us and are gracious in the accommodations of whatever she might need to be included and comfortable.

For my own sanity, I live out loud with Bridget. I am able to ask for help instead of heading for the tree. I am vocal when I am struggling. Okay, sometimes after I have ended the pity party. But most times, I am able to ask for the help I need. My village lets me ugly cry, lets me scream that this life sucks and is unfair. That I sometimes hate this life. That this is not what we signed up for as parents, to be parents of a forever 4yo and all that entails. They also let me celebrate the smallest wins with fanfare.

Do you know who has never asked if we need help? The doctors that treat the other family members. In Bridget’s 17 years, my husband’s PCP has never once inquired if he was okay or needed help. My PCP/GYN has never asked me if I was okay.

The doctors, school system and endless therapists treating Bridget treat her, but have never offered family services for the rest of us.

The state disability services have never asked if we needed anything. When asked for respite support, we were told we are not qualified because this is just parenting until she is 22yo.

Last year, when catatonia was at its very worst, I took Bridget to Children’s for a follow up, unrelated to her current health crisis. While in the waiting room, Bridget lost her shit. I mean full blown meltdown. Started throwing her shoes, her glasses, tried to take her clothes off. She was acting out in the only way she could control. She could not control where she was, but she could control if her shoes were on. As families stared, because who could help but notice, the receptionist took pity on us. We were shown to a private exam room, where I was able to calm Bridget. Until the doctor came in, rushed because they were running behind. Not the doctor’s fault, but her hastiness restarted Bridget’s behaviors.

Do you know that at no time did the Doctor ask what we needed? At no time did they offer to bring in social services or offer any means of emotional support to a family that was wrecked by Bridget’s ongoing health issues.

Would we have taken it? Or would we have pretended everything was okay, because we would fear that social services meant our family would be open to criticism. I write this with the honesty that my house was never cleaner than once a week during the first 3 years of Bridget’s life when Early Intervention came to treat her.

There was not a wine bottle to be found on those mornings!

I am not sure what my answer would have been, had my physician asked me if I was okay. I tend to think I would shrug it off; pretend I had a handle on everything. It might be why they stopped asking parents if they were okay. As a very dear friend called me out the other day, when she reminded me, I only tell people what is going on in my life after the crisis is over.

What saved me, was my village. Those who seemed to know that I was on the brink, without me having to say a word. I swear I have one friend that must have me as a bi-monthly reminder on her calendar to check in with me.

My village does let me forget about my life, once in a while. They are always there when I reach out.

More than that, they don’t let me hide. They hold me accountable to my feelings, the good, the sad, the embarrassing and the sometimes ugly thoughts and feelings that come with raising a child with a rare and complicated disease.

They are the heroes in my life, and I am so very thankful for you all.