CHOICES: Marriage and Children
I (AL) was born with a CRATER in the center of my heart (I won't give you the actual name, its hard enough to say, much less spell) and a defect in my Mitral Valve with the Tricuspid Valve fused into it. The CRATER affected all four chambers of my heart. My brother JD was born with the EXACT same thing (he's about 20 months older than me). This is not a genetically passable heart condition....... or so they said (since my birth, obviously, our younger cousin and JD's youngest daughter were born with the EXACT same heart condition).
When I was 5 weeks old I was FINALLY released from the hospital so that my mom and her parents could take me, my mom and JD (our dad and older brother would stay behind for awhile longer) from Oregon back to California for JD to have open heart surgery. My heart surgery followed 20 months later. Both JD and I spent our first 2 years in and out of the hospital; mom and dad rented a 2 bedroom apartment right next to the hospital and all three of us kids (an infant, toddler and teenager) shared a bedroom. For those of you that know me will understand N's Christmas present request during that time ---- EARPLUGS. It wasn't my talking it was the pitch of my practicing their names... He he he.....
When I was born the doctor that delivered me told my mom that "IF AND THAT'S A BIG IF THIS BABY LIVES SHE'D BE STUCK WITH A VEGETABLE SO SHE SHOULD HAVE ABORTED ME WHEN SHE HAD A CHANCE. NOW SHE WAS STUCK WITH THIS THING." This man WAS my mom's doctor when she was pregnant with me and she changed to another doctor when he told her this while she was pregnant (my mom found out she was pregnant with me right after the Roe v. Wade decision came down); however since I decided to GRACE the world with my presence about a week and a half before my anticipated delivery date my mom got whatever doctor was at the hospital since her doctor was on vacation. My mom's response to him was "DON'T BE TO SURE ABOUT THAT, SHE'S GONNA LIVE AND WILL NOT BE A VEGETABLE AND JD WILL LIVE TOO." My mom also kept telling the Dr.'s and my dad that she was pregnant with a girl and that my name would be AL. They were all convinced that I'd be a BOY (that was before they did sonograms so you did not know until the baby was born if it was a boy or girl). Way to go MOM, see her mother's intuition was RIGHT ON.
Our entire lives JD, our cousin and I have been closely watched, Cardiologist appointments were a regular occurrence in the early years, we then went to yearly appointments. JD, our mom and I lived in Texas but had a Cardiologist on call in California also since we visited there so much. I remember one Thanksgiving eating 2 pieces of HAM and spending several days in the hospital for eating too much salt.
My Texas Cardiologist during my childhood and through my young woman years was the most awesome, sweet, wonderful cardiologist, Dr. Dan McNamara. Dr. McNamara was grandfatherly, he set me down as I entered my teen years and said that even though Texas Children's was a training hospital that I would not be a "tester" and that I would not have people in and out of my rooms when I went in for my appointments, he would monitor which doctors in training would see me, if any. He respected the fact that I was a girl with a developing body and WAS NOT going to have me embarrassed. He also began preparing me for children (some of you are probably thinking, AS A TEENAGER??????). He would tell me that you may have to be in bed for some of your pregnancy and you will have to have a C-Section and explained what that was, he went on to say that when I was MUCH older and about to get married we would re-evaluate this.
What people don't realize is that JD and I are kind of the icons of this heart condition, JD is 34 and I'm almost 33 and there are not many people, if any at all older than us that survived this heart condition. So with every milestone it is a milestone for the medical community.
Dr. McNamara passed away when JD I were in our mid-twenties so we moved on to a new Dr. at Texas Children's (people with heart conditions that they were born with should always see a Pediatric Cardiologist, Adult Cardiologist are not equipped to treat us properly as the way our heart sounds would be HORRIBLE if you were an adult and developed it). Dr. Bricker was the new Chief (Dr.'s McNamara was the previous Chief of Cardiology) so he was the man for us.
During one of my last appointments with Dr. McNamara, he discovered that I was developing another heart condition, Cardiomyopthy (the form I have is called ASH, I was in the very beginning stages). By the time I began seeing Dr. Bricker my heart condition ASH had just crossed the line from the beginning stages to actually having ASH. The positive with this is that I am checked every year and I already due to the heart condition I was born with (and having NO COORDINATION, God knew I did not need any of that) I am pretty limited with my physical activity my ASH is developing VERY SLOWLY...... (FYI, I just had a checkup and they see no-difference from 4 years ago when it was noticed that I went from the beginning stages to actually having ASH).
Well when A and I were engaged he went with me to see Dr. Bricker; Dr. Bricker called me when I called to make my appointment (I had told his secretary that I was getting married and wanted to discuss babies) and said, come in and bring your fiancee. After my appointment, he (Dr. Bricker) said I know your a Christian (wow, I had never witnessed to him and so I wondered "did Dr. McNamara put that in my chart?") and I'm a Christian and I want to ask you something"........ I said, "yes, sir," he continued, "I have twins just about your age, a son and a daughter so I'm going to tell you exactly what I'd tell my daughter if she had your heart condition, ok?" I said "ok" he went on to say "You need to ask yourself if you are being a Godly wife and mother, to knowingly and willing bear a child that may have i) the heart condition you were born with, which we can fix; ii) the heart condition you developed which if they are born with they will die; ii) Tourette's (which A has), iii) Duschene's Muscular Dystrophy (my cousin had just passed away with this) and lastly MELAS (I won't even explain this one, just know its NOT GOOD)." He went on to say, "you will be in bed for your entire pregnancy and IF you live you may spend the rest of your life in bed. If your child is born with a several of these things, they may need to be medicated but may not be able to due to other ailments. Also, you will definitely have a C-Section but what if you die while trying to have a baby and leave A alone to raise a terminally ill child. If you want to do this, I'm behind you 100%, but I want you to know the facts." I looked at A and then at Dr. Bricker and said "thanks for being honest with, however I feel that if I tried to bear a child I'd be testing God. God has been awesome to me and I'm not going to test him, what do I do?" Dr. Bricker told me that with my heart condition that I could not take birth control (which I was already under conviction that if I could have children, I needed to have them and then get my tubes tied, no birth control). So I either needed to have my tubes tied or a Hysterectomy, however since I was 28 and had no female issues, I was looking at the tubes tied. Dr. Bricker also said "this does not mean that you can't be parents, there's Adoption and Surrogacy and like I said I'm behind you 100%, whatever you decide."
The decision to have my tubes tied was the easiest decision I've ever had to make, because I knew deep in my heart that my children were going to be adopted. God kept me from death's door many times over my life and I knew in my heart that I WAS NOT, I repeat WAS NOT going to test God Almighty. My mom prayed for JD and I to live and God answered that.
When we left the doctor's office I said "A my children will be adopted so if you want biological children then leave me now." He said that "he was NOT leaving me." I said "Adoption is not new to my family (my parents adopted my older brother N when he was a teenager) but it is to yours and your parents clearly want biological grandchildren." Andy said "well they'll have to get used to it, I've loved you since the 2nd grade, I always wanted you and God gave me my hearts desire, I GET TO MARRY YOU and I'm not letting you go." Yep, he really said that, I told him, "if you just made that up, remember it and keep telling me that, I like it." To this day he says that he did not make this up, that it took him until he was older to realize that what he felt for me was love.... We were getting married AND ADOPTING BABIES...... I was soooooooo excited.
On a side note, we did not find out Jay's daughter had the same heart condition until after Andy and I were married (another confirmation for me and Andy, after seeing Sydney with tubes coming in and out of her that we DEFINATELY made the right decision to adopt).
God has blessed my family in so many ways, Jimmy (our cousin with Muscular Dystrophy) went home to be with Jesus 9 years and 3 days after he took his last step (that’s another WONDERFUL blog), he lived many years longer than the Dr.’s anticipated and Jay, Walter, Jay’s daughter Sydney and I are living proof that you can survive a CRATER in the center of your heart.
Ok.... next blog, our Adoption Journey and then after that I'll blog how we got T (pray that by then we'll have a Court date for our Adoption). By the way, this IS the short version.
AL
Labels: Family Life