I sat down with my youngest son, Max, and interviewed him about life with a mom whose has *multiple invisible disabilities and brother who is a paraplegic and lives life in a wheelchair. Max was thrust into a caregiver role basically from the beginning of his life and this role was amplified four years ago, as our lives were forever changed when our eldest son was catastrophically injured in a pedestrian-vehicle incident.
*(P.O.T.S., Adrenal Insufficiency, Eosinophilic Esophagitis, Non-Epileptic Seizure Disorder, Migraine Headaches)
Heather: You’ve been in a caregiver role your whole life between all of my health issues and then your brother. What do you feel has been…well just talk to me about it; What’s it been like for you? You can be honest and uncensored.
Max: Uh…I don’t know it. It’s been scary at times, but then at other times its been joyful when Connor is doing good or you’re doing good. I don’t know…I don’t really process it because I’ve just been used to it for so long. So, it’s kind of normal now. Which sounds like a f****d-up thing to say for a 15-year old kid, but it is…
Heather: What’s been the hardest thing for you, as a typical quote-unquote able-bodied kid? Dealing with a sick mom and then your brother’s accident and learning about the whole diverse ability world.
Max: (long pause) …never knowing when the next paramedics are going to be at our house or the next stay in the hospital is going to be because that’s happened a lot.
Heather: That uncertainty?
Max: (affirming) Uh-huh. Not knowing what’s to come. Ya know?
Heather: Yeah. So, because you went through all of this at such a young age, what do you think you’ve learned?
Max: That your life can change in the blink of an eye. And never take life for granted and make the most of it but also I know I know what to do in situations, like if someone has a seizure. Not because anyone taught me but because you were having seizures so…
Heather: Well technically, I taught you, right? (Laughter). Well those are pretty profound things to learn at a young age, pretty sh***y way to learn them but…
Heather: You got thrown in the deep-end pretty young…
Max: Yeah…I had to learn my way to swim back to the shallow end.
Heather: You did…and there were rough currents. Do you ever wish you had a…smoother…float down the river so to speak?
Max: No. Cuz everyone is about individuality and stories, so I’d say we have a pretty f*******g unique story. And I’ve been through a lot and it might have sucked when it happened, and it still does, but there is nothing you can do about it and it builds character. I’d rather have that than be a spoiled brat who has everything in the world…
Heather…handed to him.
Heather: What are you most proud about yourself, as you’ve gone through this journey with us?
Max: I’d say being able to take care of myself…sometimes you have to be selfish before you can worry about others.
Heather: You’ve been very self sufficient throughout this…and you should be very proud of that… (long pause)…what are you most proud of about our family?
Max: I’d say, how we are always able to come back together and be close after all of this…cuz it would be easy just to go and lock ourselves in our rooms…but only you and Connor do that (teasing)…(Laughter)
Heather: (Laughing) Only at the end of the night when we are tired! What do you feel, as a family we could do better?
Max: Uh…not fight as much. Like last night, over…uh…the TV.
Max: Uh… I don’t know. That’s a good question. (Long pause) …I think we do fine as a family.
Heather: As we are developing the Kids and Sibs program and reaching out to these families, what would you tell me, “Hey Mom, make sure you don’t forget this…”
Max: I’d say to make sure they have fun and can take their minds off of stuff for a little while.
Heather: Going back to an earlier question: What do you think has been the hardest part about all of this?
Max: What? About life? I guess two things: Always knowing what’s happening but not always knowing why. And all of it happening in such a short amount of time. Like, obviously your health problems have been going on my whole life but then to have Connor’s accident and have all our lives to be changed doesn’t make any sense.
Heather: If Heaven exists, what would you like to hear God say when you arrive at the pearly gates?
Max: Uh…when I die…if God is real… I want him to tell me…you know that meme where a little dog asks God if he was a good boy and God says, “No, you were one of the best.” …I’d want him to say something like that to me.
Heather: What advice would you give to a sibling or young one going through a tragedy or living with a loved one of diverse abilities?
Max: Cherish family and friends and if you ever need help talk to someone, cuz I never talked to anyone because I feel like I don’t really care…I do care that my brother got hit by a car, and no one should be in a wheelchair, it’s like normal life now. So, probably, stay strong and get help when you need it and know that there are others out there.
Heather: I love you.