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Chapter 6

Chapter 6. The Diagnosis

It wasn't even a week before we got a call back from the doctors office.

"Hello, is this Aaliyah Swan?" Said the lady on the phone.

"Yes." I replied.

"Ah, good. Can I have you confirm your date of birth for me please."

"It's October 3rd, 1986."

"Perfect. It seems like Dr. Cullen would like to schedule a follow up appointment to talk about your Ehlers Danlos syndrome."

"Oh! Um, OK. Hang on, let me go get my dad, he'll be able to schedule the appointment."

I went to go get dad. Since he's the one who'll drive me to the appointment, we have to do it on his time.

"Dad! Phone call!" I yelled down the hall. I heard some shuffling and then his door open and shut. He came out and asked who it was.

"It's the doctors office, they want to schedule another appointment." I said.

"Got it. I'll get that handled. Would you go get something in the oven for me?" He asked.

"Yeah. How does a casserole sound?" I asked back.

He just gave me a thumbs up and a head nod.

I went into the kitchen to start making my 'lazy day casserole'. All it has is cheese, tater tots, sour cream, and some kind of meat that will bake with it. I used some chicken from yesterday's leftovers, so that we won't get sick.

After the prep was done, dad came into the kitchen.

"Alright, we've got an appointment on Thursday. Thanks for starting on dinner." He said.

"Yeah, I was in the mood for casserole anyway." I said.

He gave me a nod and we chatted at the counter while waiting for the food to be done cooking.

After the timer went off, I got the casserole out of the oven and put it on the stove. If I cook, dad does dishes, but if he cooks, I do dishes. So after we were done, he cleaned the dishes and then it was off to our own devices.

I decided to continue to work on my diamond painting sign. It is very cute, with what it says and the twine that holds it up. I was almost done with it, so I put the finishing touches on it and hung it up on my wall. After I was done it was time for bed.

Wednesday was just a normal day. I worked and so did dad. Then we ate dinner and went to bed like normal. Little did I know that my life's course would start changing tomorrow.

When it was time for my appointment dad and I headed back to the hospital for the third time this week. At this point I knew where I was going and I sat down in the lobby after checking in. When the nurse called me back again, I was a little nervous because she also called my dad back too.

They didn't call him to come with me the past two appointments, so it's putting me a little on edge. He seemed to notice it, so he put his hand on my shoulder and gave me a comforting smile.

We got in the office, and the nurse took my vitals once again. I hated sitting on the bed with the crinkly sheet, so I sat next to dad in one of the chairs instead. It only took a few minutes for the doctor to come into the room. It was the same doctor this time as well.

"Dr. Cullen." Said dad with a nod of acknowledgement. "What's this about?"

"Hello Chief Swan. I called you both in because I have some news. It's not great, but it's manageable." Dr. Cullen said sullenly.

My heart rate picked up, "what does that mean!? This doesn't sound good!" I looked at dad very alarmed.

"Say it straight out." dad said with gritted teeth.

"Aaliyah, I need you to be calm. Take a deep breath for me, OK?" He said walking me through calming down.

"Alright. What you have is called Vascular Ehlers Danlos Syndrome. That means the tissue in your body is very fragile. So if you've ever noticed that you bruise very easily, that would be why."

"Well, why is it so bad then? It's just extra bruising, right?" Dad asked nervously. I held onto his hand tightly, and he gripped mine back.

"I won't mince my words, but VEDS is the worst kind of EDS. Because the tissue in your body is weak, it can cause ruptures in your organs. The life expectancy of someone with VEDS can be from 6-73 with a median of 48. If not managed properly, you could have a cardiac event and not recover." Dr. Cullen said slowly.

It felt as if my whole world was crashing down on me. My life was essentially over. If I overdid anything I would die, simple as that. My face was blank as my mind rushed with scenarios of me dying over and over again.

"-ah... Aaliyah!"

I was shaken out of my stupor very suddenly and I took a deep breath in after realising I wasn't breathing.

"Aaliyah, breathe," Said dad, looking very concerned, "we're going to figure this out. You aren't going to die, not on my watch."

When he said that I started crying. I was full on sobbing within seconds. All I could do was wrap my arms around dad and weep.

What I didn't see was the pain in Dr. Cullen's eyes. He looked like he wanted to rip out the heart of whatever God did this to her.

After a good 5 minutes of crying, I slowly stopped. I was just sniffling at this point, trying not to cry more.

"Dr. Cullen, what can we do about this?" Dad demanded.

"All we can do is pain management and be careful not to overdo anything. It will be tough at first, but it's possible to live with it and have a fulfilling life." Dr. Cullen said softly.

I could only nod now, my voice was completely gone. If I tried speaking, I feared I would start crying again.

Shortly after, dad and I headed home and as soon as we got there, I booked it to my room. I could hear dad on the phone calling out of work for me. I laid in my bed trying not to think of this too much, but it was hard. I eventually fell asleep with no dreams that night.