I’m exhausted and scared. There are days when I can’t believe everything we have been through, and every day it feels like it’s something new. On a day we celebrate really big milestones, we are also delivered devastating news. It is the pattern we live in with a child with chronic illness. For 3 years we have added diagnosis after diagnosis, and every single one has been a punch to the gut. I am a Endocrine Mom, Chiari Mom, Sensory Processing Disorder Mom, Apraxia of Speech Mom, Adrenal Insufficiency Mom, and yesterday we added Heart Mom. I am in countless boards with parents from all over dealing with diseases and diagnosis for their children. There isn’t a single board that fits everything we go through with Von, and there are days I wish I was just Von’s Mom.
When I think back to his birth, I remember all the possibilities we had. The joy I felt and the love that engulfed me was like nothing I had ever known. There was nothing during that time that could have ever prepared me for a meeting with a cardiologist. It was a surprise meeting at that. All we were doing was a quick follow up on a heart murmur. It was suppose to be in and out. They would do the ultra sound, and we would go on our way. It never works out that way with Von. We have never had a test where it didn’t come back abnormal and this day was no different. I studied the tech’s face as she looked at Von’s heart, and I saw her concern in her eyes. My heart sank as she took pictures and zoomed in to the heart, and when it was over I casually said, “So you didn’t find anything serious, right?” I already knew the answer though. She just said “I can’t lie, I need to get the cardiologist.”
I sat there and my stomach dropped. I got sick to my stomach and had to go to the bathroom 4 times in 20 minutes. I stared blankly at my phone thinking of anything it could be. Obviously, because Von has so many incurable diseases I assumed the worst and landed directly at heart disease and no cure. Dr. Gremmel entered the room and delivered a shocking blow. Von’s mitral valve has stiffened and it’s called Mitral Valve stenosis. The valve is broken and only working about half the way it should. This would explain Von’s increased work of breathing, shortness of breath, fatigue and paleness. It was apparent to the doctor based on his symptoms that surgery would be the next step. I remember sitting there totally calm and was like “this is fixable?” It is fixable via “open heart surgery” said the doctor. It didn’t even matter to me. This is the first issue Von has ever had that we can actually repair.
It wasn’t until this morning that I realized the magnitude of the disease. This is never going to end. Von was diagnosed with Connective Tissue Disease. A disease that impacts the bodies collagen. His body doesn’t not produce enough collagen to adhere to the tissue. The tissue in turn breaks down and it harms organs, skin and muscles. This is going to be a disease that will debilitate and continue to attack his body bit by bit. It was clear to me in that moment, there is no more working for now. I requested a leave of absence from work. We hope that I will be able to return, but it will all depend on whether or not Von’s heart surgery is successful. No matter what with connective tissue disease, you are always going to be waiting for the other shoe to drop.
We had recently discussed expanding our family via adoption. Again, this will be put on hold as we continue to focus our energy on helping Von. We want to be able to provide everything we can to Von, and financially it won’t make sense to add another child. We are exploring all options for work for myself. I have 3 months of leave to figure out what to do about my career. I would LOVE to be able to return, but I’m fearful this disease is going to take me away from the career that I love. The demands of the disease have pulled my heart and mind away from everything. I can’t concentrate on anything other than keeping my boy safe and healthy. My child’s health is far more important that any amount of money.
In light of these really big changes, we have opted to set up a gofundme to cover the lost wages and manage his disease. Please click the link at the bottom and consider donating. We really could use any amount. We simply just want to be able to focus all of our energy on helping Von. We appreciate the thoughts and prayers. My goal is that I will be able to just be a mom and not have to split my time between all of our other obligations. One step at a time and one minute at a time. We will get to the other side with our faith in God and your help. Thank you!