Skip to main content

To Live Through September With a CHD

   
                                                                                         
            As a child, I always called September “hell month”.  I called it this because I like other CHDer’s grew up with learning disabilities.  What does this have to do with September and the name I chose?  Well it is when school began again and it was scary to have to deal with a new teacher/s and explain that you have a learning problem, and give them notes from your cardiologist on the days you were absent.  These were fears that ran through my mind at the beginning of the year.

            As years went on and everyone knew me, and 2 or 3 or 4 surgeries later, you get over this because you realize any month can be “hell” not just September.  You become acutely aware that at any moment that shoe could drop and eventually it will.  I also began to look at it objectively.  Realizing that should the shoe drop, it is not a foreign experience, and I would conquer through just like all the times prior.  Tough if the teacher had to make an accommodation for me because I was absent due to a cardiology appointment.  What was their alternative?  Frankly, I was the one with the bigger life issue at hand.

            In college, I began to see September in a completely new light.  I would share stories with friends about what I was going home to for the Jewish High Holidays.  I really began to cherish these traditions, and make everyone’s mouths water in the process.  Not only is it the start of the school year and all the holidays for every religion but it began to feel like a fresh new start.  I wish that New Year’s Day would be September first.  This way as everyone heads back to work and to his or her routines, they can feel they are doing so with a clean slate. 

            Last September through the middle of October 2011, was indeed “hell month” for me.  I was so ill and full of ascites.  The doctors literally did not know what to do for me.  After nearly exploding and dying at my mother’s table on the first day of Rosh Hashanah, I spent three and a half weeks in the hospital while I was evaluated for a heart transplant, and had multiple treatments and procedures.  The doctors did not know if it was my liver or my heart or both, they felt I needed a new organ but were unsure of which one.  I am unable to receive a liver by itself, but if I needed a heart then I would be eligible for both.  Every day was a battle as I “stumped” the doctors.  The doctors discussed my case at transplant committee meeting each week. 

Finally, they decided I would need a second opinion at Boston Childrens’ Hospital.  Being told that if I needed a heart they could not transplant me because of my anatomy, and the fact that they do not transplant adult CHD’ers upset us all.  This back and forth was extremely hard on my family.  Meanwhile I was missing every holiday there was and was bedridden when I should have been with company and friends for the start of our religious new year.  I missed my yearly participation in the Yom Kippur services, which has become something I do since my last surgery so it means a lot for me to be able to get up and chant for the congregation. 

This September I got many of my wishes.  I am not on the transplant list and do not need to be at this time.  I was home for the holidays, which are continuing.  I was offered to chant in the large sanctuary in my synagogue.  This is where we sit, so none of our friends had to commute to the smaller service.  I had my rabbi up there with me.  When I finished he called me over and stated that he knows it was important for me to have chanted and he was delighted I was able to this year.  Certainly a welcomed change to his visiting me in the ICU last year.  Tons of people congratulated me and expressed that they were happy to see me again. 

 This September has been a magical one and a clean slate for me.  I participated in the holidays, while proving to myself that I am still capable of doing so and I am in my last year of graduate school, doing my internship prior to student teaching.  I feel like shouting ‘YES, I am back’! I am singing, seeing concerts, and all the hell of last year is behind me with the door closed.  I see a new one opening.  So far, I like what I see!
I hope you all had a good September and can relate in one way or another.

Comments

Post a Comment

Popular posts from this blog

An Open Birthday Card to My Big Brother

                                                                                                                                   Nov. 19, 2017 Dear Andrew, This year I decided to write you a birthday card.  My boyfriend Ian, whom I've been with over a year and who I think you would like asked, "So do you guys give Andrew birthday cards?" My response was "No, we just don't." Ian then asked "Do you have a cake for him, because I want to honor him how you guys do. Would it be OK if I bought an ice cream for him to have at your mom's house after dinner on Sunday." (Yes, it's Sunday, November 19, 2017.)  See I told you, you would like him.  He's all about wanting to have ice cream cake. Oh, wait that's why does David likes him.  But enough about the ice cream cake that we are not having, or the cards, gifts,  and candles that we no longer do on your birthday.  Instead we go to Rick's and reminisce about the time we were lucky t

A YEAR WITHOUT MUSIC!

A YEAR WITHOUT MUSIC! This memory could not be more timely. April 5,2016 i had a major stroke. This Wednesday will be one year since my stroke. For the first 2 months all I could say to people was "I had a stroke" which sounded like stwoke . Music had not even occurred to me as I had many complications that were not directly associated with my stroke. But why am I sharing all of this information with you, is because the part of my brain that was affected or is it effected? Was language. I planned to sit down today at my computer which us still hard for me to do texting us easier with my right hand weakness. Oh I forgot to mention that I was temporary paralyzed on on right side for 24-48 hours. But "I had a stroke". I would have to l this year as a year without music. Couldn't recall what I'd forgotten and then sobbed when I remembered what I forgot without remembering the music, show, favorite singers... you name, I was like a blank slate. (Sir

What It Really Feels Like

What does it really feel like to have a CHD? Well not great all the time. There's constant let down in life as doctors figure out how to treat us adults. There is a lot of trial and error medically based which is why I say I'm in 'Generation Guinea Pig'! My first memory was my mom changing my younger brother's diaper and telling me that when we got back home from vacation I was going for a cardiac cath. So I'm 4 1/2 years old. I don't recall crying which I was told I did but I already knew what a cath was it wasn't new to me. Neither was my addiction to Annie the Musical, my mothers voice or my desire to sing like them be on stage and be a mommy when I grew up. I wanted to sing and be a mom as a grown up and of course I'd have a cute husband. When mom, David and I walked to the beach my father was there with Andrew who was just told about my going to the hospital too. In those days we were pals and he found me a sea shell- my favorite.  31 years l