To the Landlord Who Refused to Understand My Son's Needs

When Kayden was born he was flown to the Children’s hospital 2.5 hours away. We stayed for more than 30 days trying to figure out what was wrong with him. Test after test came back negative. We saw Plastics, Genetics, Physical therapy, Occupational therapy and many more specialists and therapists. At 1 week old Kayden got his feeding tube placed. He healed fine but we couldn’t leave till Kayden stopped having bradycardia episodes. He randomly dropped his heart rate and oxygen levels without any explanation. Did I mention he would turn blue?

But I wouldn’t expect you to understand all of this.

Finally we got set to go home and got a diagnosis: 22q11.2 Distal Deletion. A rare genetic deletion in the 22nd chromosome. We went home with a feeding pump, suction and a heart monitor. Kayden would turn blue, choking on his own saliva because he couldn’t handle it. We had to pull over the car many times to suction him out so he could breathe.
Many nights were spent listening to an ear piercing monitor because his heart rate was too low and we would have to re-position him so he could breathe. Multiple times a night.

But I wouldn’t expect you to understand all of this.

Soon after arriving home we started therapy. Or should I say therapies? We had physical therapy twice a week, occupational therapy twice a week, speech therapy twice a week (yes speech therapy for a child 1 month of age, they help with feeding), we had developmental therapy, and soon started aqua therapy, vision therapy, hippo therapy and hyperbaric oxygen therapy. Do the math.

When Kayden was a few months old, he went unresponsive. As we sat in the emergency room all night we learned he had pneumonia, but because of his weak immune system, his body wasn’t even trying to fight it off. Since then, he has had many hospital stays, some leading to having to be flown to Kansas City 2.5 hours away because our local hospital doesn’t have the technology to take care of Kayden. They even refuse to put ear tubes in because he’s “too much of a risk.”

But I wouldn’t expect you to understand.

 

By the age of 4, Kayden has had more than 170 doctor’s appointments in Kansas City alone, 2.5 hours away. We have spent many days doing therapy after therapy, doctors appointment after doctors appointment. Sometimes being in Kansas City three times in one week because Kayden needed to be seen. We would come home exhausted. Clean laundry would get piled up because we just didn’t have the time to finish it. Rinsed dishes would lay in my sink, and I would be lucky to squeeze in a shower.

But I wouldn’t expect you to understand.

He is 4, only crawls and cannot walk, nonverbal and can only have purees by mouth. He is working on understanding things as well. Communication is a challenge as of now.

But I wouldn’t expect you to understand.

Finally, Kayden got big enough to love to “play basketball” and would shoot hoops in the living room with his cute Little Tykes b-ball set. Well, at least he did before you came in and said we were being too loud. Five neighbors and no one complained till you came in. Multiple noise complaints for things physical therapy would tell us to work on. Like basketball for instance — shall I remind you, it was with a baby basketball?

Returning after a long day of therapy/therapies and doctors appointments you gave us a lease violation because there were rinse dishes in the sink. I repeat, rinsed dishes in the sink. Oh yeah, and this during the week of Christmas. Merry Christmas!

Our window leaked for a few years. Or should I say rained water in our house? Unfixed. But I need to have my dishes completely put away?

I don’t expect you to understand our life. In reality, no one will understand unless they are living it.

But, what I do expect from you, is to see where we are coming from. Maybe the dishes weren’t done because we just spent five days in the hospital 2.5 hours away from home. Or maybe it was because we had three different therapies in one day and are just beat.

When you walk into my home and tell me “stop using your special needs son as an excuse for everything.” Shame on you. Shame on you for judging me before you know my story. Shame on you for refusing to understand. Shame on you for being a down right awful person. But shame on me for allowing it to get to me. Shame on me for not sticking up for myself.

Parents, don’t let negative people get to you. You are strong.

Some people just don’t understand. And we shouldn’t expect them to. There are still decent human beings who will make an effort to understand. And when it comes to landlords, don’t settle for negativity. We don’t have time for negativity in our lives!

But we wouldn’t expect you to understand all of that.

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Thinkstock image by gemenacom