I am Grateful: Nicole’s Diagnosis Anniversary

January 22,2019

January 22nd is a very emotional day for our family. It was on this day in 2010 that we heard the words “pulmonary arterial hypertension” and “Eisenmenger’s syndrome” for the first time, and in the same sentence as “congenital heart defects.” It was like a trifecta. I can’t even imagine how my daughter, Nicole, felt but I do know how I felt. It always seems like yesterday. We went to this appointment at the cardiologist as a family (my husband Rick, Nicole, and I) and on the day before when the pediatrician referred us to the cardiologist I never thought that a terminal diagnosis would be given.

It is hard to process and articulate my emotions on this day. I am grateful for the doctor, who like so many, did not tell us, “Nicole has X amount of months/years to live,” but the opposite. I am grateful for the echo technician who made both Nicole and I feel at ease during the procedure. I would never wish this on anybody. I remember on the way home thinking, “I wasn’t wrong, I wasn’t crazy, I wasn’t paranoid. I knew something was wrong.”

I had no idea it was going to be something so horrible. I remember the doctor saying that Nicole wouldn’t be able to carry a child because her heart couldn’t endure the strain. I remember thinking and talking to God that I was OK with that if it meant she lived.

2010 was the worst year of my adult life. The only year that came close to that was 1998 when my mother passed away. The year started with this horrible diagnosis that left us all shell shocked. While I know I am not the patient and I don’t have to live with the disease, I have to watch Nicole endure it, and sometimes I wonder what is worse.

In the first month we had a stay in the hospital following a right heart catheterization in Tampa, where we learned how severe the disease was at this point. We learned that she would need to be on oxygen. I am grateful that I homeschooled at this point and the flexibility that gave us. Two months after this diagnosis, Rick lost his job of 25 years along with his insurance. We had to pay for COBRA just to make sure Nicole could get what she needed.

I am grateful to my brother-in-law, who owns an auto repair shop and gave Rick a job, but it was with a major pay cut. I have always been home with Nicole as this was important to us. We almost lost our house and had to file bankruptcy just to keep from drowning. I still feel like this most days; like I’m drowning and I’m still waiting for a life raft or preserver.

I believe it was in 2012 Nicole was approved for social security. Eisenmenger’s syndrome (reverse shunting of the heart) had just been added to the compassionate allowance of illnesses/diseases. This meant an automatic approval if you qualified financially. I was more concerned about the insurance. I worry about Nicole and her future and the struggles of finances and the lousy choices we have made when it comes to that. I can list all of the negative emotions and feelings and despair that we still walk through from 2010, but if I wallow in that I can become depressed and I will not do this. It has been a long, hard road to work through the guilt I have for not being more aggressive with the doctors leading up to her diagnosis.

I am grateful that God protected Nicole for 15 years with these issues as I know things could have turned out a lot different. I know that Nicole’s life-long dream of becoming a veterinarian died on this day nine years ago, but I also believe that she has a higher purpose and calling through her art. She has always been gifted, ever since she was a little girl, but I do not think that she would have cultivated and blossomed this gift if it wasn’t for this diagnosis. I know that her artwork gives her an outlet for her pain and struggles every day, and there are very few days in which she doesn’t draw at all. She has put a lot of effort into this gift. I believe that her becoming an illustrator will benefit so many children with her stories and pictures within the PH community and outside of it.

The zebra pictured below was sitting on my desk this morning. It was supposed to be a Christmas gift, but Nicole didn’t finish it until now. With it was a note from Nicole. I will not share the whole thing, but I will share a snippet. She started the note with, “Happy Anniversary.” I am not sure either of us would put “happy” there. She goes on to say, “I don’t really know where I’d be without you fighting for me. I know I could do it myself (and sometimes I feel like I should), but you do a way better job than I ever could. Life would be a lot harder without you.” I am embarrassed that I was upset that she didn’t get it done for Christmas and took it so personally. I can tell you that it was much more appropriate for this day.

I find it very hard when I have comments from the medical community and outside of it for doing what I do for Nicole because, “She’s an adult and she should do it herself.” I know Nicole struggles with the comments also when others say to her, “Why do you let your mom do everything?” I can’t tell you how much I have grown as a person and the lessons Nicole has taught me in her life. I know there’s a lot more than I have taught her. I know that this is my calling from God and my cross to bear. I know I will continue to do what I do until I take my last breath.

I struggle so much with the guilt of not being able to contribute financially to the household and to help Nicole when we are not here. God has not answered the prayers for my businesses to be successful which leads to great anxiety for me. This morning I saw a quote that said, “I know I am on the right path because things stopped being easy.” I absolutely know this as truth. Next time I have doubts that I shouldn’t be doing what I’m doing, whether it is being an advocate for Nicole, or getting my house organized, or being more mindful of the choices that I make, I will remember this is all because I am on the right path.

I am grateful for so many things. I am grateful Nicole is stable, and glory to God for that. I am grateful for her PH doctor and team who have worked so hard getting her what she needs with insurance changes, as well as treatment. I am grateful for some of the most wonderful friends I have made in the PH community. I am grateful that I can help so many other caregivers and patients through being a co-support group leader for the Orlando PH support group. I am grateful to be able to volunteer through PHA, answering the patient support line as well as being a co-leader for the Parents of Children phone support group. Nothing saddens me more than hearing that a patient doesn’t have someone in their life to help them with this disease. I think everyone who suffers from a chronic illness should have someone fighting for them.

This is something that I never wanted to have to do and be, but even if I had known prior to getting pregnant with Nicole what our lives would look like now, I still would have chosen to be in this place. Nicole has filled my life with so much joy and I am so very grateful for this. I will always fight for you because you are worth it and so much more.

-Jane Northrop

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