Rarity (14 page)

“Brogen, sweetie.”  Soren’s mom ran up to me and hugged me.  His dad just glanced up with a half smile to greet me.  “I hate this stupid disorder.”  She was crying, I could hear it in her voice and feel my shoulder growing wet.  “He’s such a sweet kid, why does he have to endure all of this?”  I felt a tear slip from my eye.  Soren plopped down next to his dad and ran both hands through his hair in frustration. 

“When will they be done?”  I asked.

“They’ll let us know, but they expect 3 hours if there are no complications,”  I nodded.

“Would you excuse me?  I need just a moment.”  I excused myself and headed to the bathroom.  I didn’t actually have to use the bathroom, I just wanted some privacy.  While in there I Googled VEDS and colon.  Just a few pages came up.  I clicked on the first one where it talked about hollow organs being fragile, colon’s tearing, people often not surviving surgery but those that did had to wear a colostomy bag.  Now the tears were falling endlessly from my eyes.  I could lose Jay.  I may have missed my chance to say goodbye.  I stood and headed back toward Soren and his family...but I never made it there.  Instead I found myself in the hospital chapel.  Strange, since I wasn’t even a church going person.  It was beautiful with its warm, ornate wood and stained glass.  Candles lit up the front of the chapel.  I walked to the front and lit one.  And then I said the first prayer I ever said in my life.

Dear God,  I probably have no right coming to you now in my life.  Honestly I don’t even know if you exist.  But, if you do, and if miracles exist...one is needed.  You see, there is an amazing human being who has gotten the short stick every single time.  But he always finds a way to be happy about it and make everyone around him love life.  He needs healing, he needs to make it through this.  He deserves to live. Please, please help him. Amen.

I sat in the chapel and read more on VEDS.  I had not looked into it since first talking to my mom.  I was haunted by all the young faces of those who looked completely healthy and then suddenly died.  They all looked related to Jay, big eyes, straight hair, shadows under the eyes.  There was a link to a youtube video, “Coming Unglued”.  I clicked the link with the volume off.  It was the saddest four minutes of my life.  I watched a man who was being treated for aneurysms in the hospital and was diagnosed with VEDS.  His wife gave birth while he recovered from surgery and he got to meet his brand new son.  A few weeks later the dad died and the newborn baby was diagnosed with VEDS.  I felt the arms around me and I buried my head in the shoulder holding me while I let the sobs rack my body. 

Chapter 19

Alot can happen in six hours.  You can get married, buy a car, buy a house, fly to Cancun, have a baby, die…  Jay and I were in the same building, near some of the same people - but our six hours were vastly different.  Jay fought for his life, as much as an unconscious person can actually fight.  But I believe his spirit, his inner strength was what warred on.  I spent my six hours falling to pieces, grieving for Jay and the countless people who shared this disorder, and getting so angry at how unfair life felt.  Meg had turned up in the chapel and found me at my lowest.  She’s like a sister to me and she was there to support me when I needed her most.

“Your mom wants to head  home once Jay is out of recovery.  She’ll take me home and I’m gonna’ leave my car with you so you can come and go as you need.”  I hugged her tight. Words were not enough for how much I loved her and how grateful I was.  The three hour surgery had lasted far longer than anticipated.  When the doctors tried to patch Jay, his tissues did not respond like a normal person’s.  The surgeon came out and told us he was not sure what else to do for him.  Jay’s tissues were like wet toilet paper - falling apart as they tried to stitch them together.  Thank God Mom had showed up at the hospital.  She insisted I join a support group through facebook.  Instantly I was messaged by so many people from around the world that were dealing with VEDS or had a loved one with it.  One woman had lost her son to it and she private messaged me a phone number to a scientist who had years of experience with Connective Tissue Disorders.  The scientist’s name was Nazli.  I called the number given and Nazli spoke with the surgeons and advised them on techniques and materials that have worked in past VEDS surgeries. This one woman’s advice helped save Jay’s life.  For that I would forever be grateful.

“How are you doing kiddo?”  My mom stepped away from Jay’s aunt to give me a hug. 

“Emotionally fried.  But relieved that he’s gonna’ be ok.”

“You should keep in touch with those people on that facebook page - seems like they are an incredible resource and an amazingly supportive group.  Jay should join too.”  I nodded.  My phone was pinging like crazy from the facebook group members.  They all wanted to hear the outcome, not to be nosey, but because another person surviving a traumatic event is another positive in their world. 

“If Jay’s family is ok with it, I’d like to spend the night.”  I informed Mom and she nodded.  She knew it was a school night but staying by Jay’s side as he healed would do more for me than a day in classes.  Soren and his dad came out of a set of double doors, followed by a gurnee carrying a sleepy looking Jay.  The muscles in my face protested as I inverted the frown into a smile that spread across my face.   He caught my eye and a little smile lit up his face.

“I’ll see you later pumpkin, be home by dinner tomorrow.  And call me if you need me.”  Mom kissed my cheek.

“I love you Mom.”  I hugged her tight.  Then I thanked Meg and hugged her as well.  I wanted to let Jay’s family visit with him first so  I asked the nurse at the nurse’s station where the soda machine was.   She pointed down the hall and around the corner.  I headed that direction and felt so much lighter knowing that Jay had made it through. 

“Brogen!  Wait - Jay is...demanding to see you.”  Soren was smiling.  I turned and headed back to the room.  His aunt and uncle wore grateful smiles on their faces and Jay was propped up in bed.  He smiled and motioned for me to come closer.  I sat in a chair near his bed.  He extended his palm for me to take and I wrapped my hand in his.

“We’ll give you two a few minutes, guess we can grab some cafeteria food,”  his aunt said.  “Be back in half an hour.”  She kissed Jay on the head.

“Thanks Auntie.  Love you.”  She beamed at his words.  As soon as they, left he turned toward me.

“Scary stuff huh?”  I nodded, afraid that talking would bring on a new round of tears.  “You don’t have to stick around, I mean, I’d understand if this was too much for you to deal with.”  Now the tears were forming in my eyes.  He looked away and let go of my hand.  “Thanks for helping my family, for helping me.  I’m so grateful.”  Now he was looking down at his hands.  I knew I needed to coax the words from my mouth but I was having trouble.  I needed to say it the right way.  But the words didn’t come, at least not right away.  I gave up trying to make it right and just began spewing what was on my mind.

“I thought you were gonna’ die.  I was so scared.  It’s so messed up.”  I looked at him and he was looking at me with watery eyes.  I grabbed his hand and put my hand around his.  “But that doesn’t change how I feel about you.  You are the most beautiful and amazing person I have ever met.  Even if you died tomorrow, I would be the luckiest girl for knowing you as long as I did.  This VEDS stuff is scary - so scary.  But...you’re not dying, you are not handicapped, you can run, jump, swim, go to movies, ride a ferris wheel, graduate from college...  you still have a lot of living to do.”  I paused and he was listening intently.  “The scariest thing about all of this, is realizing how much I love you.  How I want to laugh, cry, scream at the world with you - whatever each day brings, I want to live it with you in my life.”  I unzipped my backpack and pulled out my journal.  “My life has changed into something far more beautiful with you in it.” 

“What’s this?”  Jay picked up my journal and opened it to the first page.  I explained how I would sketch after each day to release the pressure or energy.

“Look at the dates.” He had gotten to the part where the images had color.

“What changed here?  Decided to use color suddenly?”

“I didn’t consciously choose to draw in color - that was the day things began to change in our relationship.  I sit at the same desk with the same jar of pencils to pick from.  You’ve changed something in me Jay - it’s all right here, proof that my life is better with you in it.”  A tear fell down his face.

“You’re an amazing artist.”  He pulled on my hand to tug me close.  I thought he was going to kiss me, but instead he whispered against my cheek, “I love you too Brogen.” Then he kissed my cheek gently. There was a throat clearing coming from the doorway so we broke apart and looked up. 

“My turn!” Soren said.

“What, you wantin’ a kiss too?”  Jay puckered up and Soren laughed. 

“Yeah, my lips are lonely now that I kicked Becca to the curb.”

I couldn’t help asking, “WHAT?!  What happened?”

“She overheard me talking to my mom about Jay’s VEDS and blabbed it to one of her buddies.  Turns out her buddy turned around and told me about it.  She’s not a keeper.  Sorry she spilled the beans man,”  Soren said.

Jay returned,”Oh well.”

“Hey Brogen, mind slipping me Meg’s number before I leave tonight?”  Jay and I both looked at each other, surprised to hear this.

“Sure.  Listen, I’m gonna’ grab a soda and let you guys talk.”  I kissed Jay on the head and stood to leave,  I turned back and studied Jay for a long moment, “By the way, Jay?  You look….”  I paused pretending to be deep in thought and to make the moment more dramatic and nerve racking…”Nah, nevermind.”  I smiled and walked away.

“Ugh!”  Was all I heard as I exited the room and headed down the hall.

Epilogue

(Jay)

“Brogen, are you ready to go?”  I finished tying my shoes, but this simple task seemed overwhelming.  The last time I saw my dad was at our wedding.  Brogen thought we should invite him, even though he had not been in my life since rehab.  It was uncomfortable being around him and my nerves seem to get the best of me. 

“I’m ready.  Quit being so nervous - you know we won’t be alone with him.”  Thankfully my aunt and uncle made an excuse to join us because they “hadn’t seen us in awhile.”  It was a fib, they saw us every Sunday for dinner and sometimes during the week.  They loved me as if I was their own child, and wanted to support me as I broke this news to my dad.

“You know, we could just send him an announcement.”  I hoped she would see my humor and agree.  Instead she leveled me with her gaze.  This was important to her so I needed to man up.  “You’re lucky I’m so smitten with you that you can manipulate me to do your bidding.”  I had more of a backbone before Brogen - but love does funny things to you.   

“I love you.  Everything will be fine and nothing he says can change the outcome.”  She kissed my cheek before grabbing her purse. 

Brogen and I were expecting a beautiful baby boy in three months. There was still no cure for VEDS, but they had several treatments that I had started to try and keep the complications away.  Besides the colon tear I had in high school, I made it through the colostomy bag reversal without any problems.  My scars were awful, but it was better than having to deal with the bag.  Nothing else besides bumps, bruises, and some wicked cuts.  Several of our friends on the facebook support page had passed.  Each hurt as if we lost a family member, and a little hope died with each one.  They were all “healthy” and died suddenly.  Others we knew were dealing with dysautonomic symptoms (including their body not moving their stomach contents), some were in hospice and planning their own funerals, and others were living happy lives past their 48 year expiration.  It was such a crap shot.  Brogen helped me keep my head on and look just two steps in front of me. 

“Let’s get it over with.”  I stood and opened the door to the apartment for Brogen.  When the sun shined on her face, she looked radiant.  The pregnancy made her cheeks flush more often.  She was so beautiful and she was mine.  The baby she carried was a symbol of our love for each other. Brogen had been trying to get me on board with having a baby for over a year.  She hadn’t convinced me - with a 50/50 chance of giving VEDS to my kids...I couldn’t live with myself if I knowingly passed this to my kid.  I couldn’t watch them deal with it.  Then Brogen chatted with one of our facebook support friends who did a procedure called PGD (
preimplantation genetic diagnosis).  They could identify if the fertilized eggs had VEDS and only implant the ones that didn’t.  When she suggested we try it, I agreed.  Our friends and family supported us, but strangers who didn’t know the horrors of this disorder chided us and said we were “wrong to play God.”  We no longer shared with strangers and acquaintances….not worth the hassle.

The drive across town only took twenty minutes and my hands felt sweaty.  “So if I say ‘I think we should get milk on the way home’  that’s the signal it’s time to leave.”  When I married Brogen, I started going to a new therapist.  She had me create an escape plan to feel more at ease with telling my dad.  Brogen had a hard time understanding why I felt this way.  But even though he hadn’t been in my life, he was still my dad.  I still loved him, and I still hoped he’d be happy for me.  But I feared the news would unsettle him.  He knew VEDS was hereditary and was sure to make him worry his grandchild might have this terrible disorder.

Brogen rang the doorbell and I wrapped my arms around her, splayed my hands across her growing baby bump. I could do this, I had my girl and my baby.  My dad opened the door, he looked from me to Brogen - to Brogen’s large belly, then he rushed out to embrace us.  “Hi Dad,” was all I managed.