Starting in 2022, my 'unknown' neurological autoimmune disease started to show new symptoms. I have unexplained pharyngeal dysphagia and peripheral neuropathy in my lower legs.  After a full work up with a rheumatologist, neurologist, and neuroimmunologist, no diagnosis was made. It was agreed that we will just watch and treat symptoms as they occur. I found out about 9 years ago I was born with a bicuspid aortic valve and was diagnosed with a thoracic aortic aneurysm. 

Every year I would see my cardiologist and she would review my echocardiogram to confirm there was no progression of stenosis. January of 2026, I started noticing more edema, shortness of breath and heart palpitations. I was referred to a cardiac surgeon and a valve specialist. At that appointment I was told that my aortic stenosis had progressed to severe and it was recommended that I have open heart surgery within 4 weeks of that appointment. 

My youngest child, Emma, has down syndrome and I wanted more time to arrange care, etc., but I was advised against it. I was worried about who would take care of her, if there were complications. My boys are 21 and 18 and working full time jobs, but they help as much as they can. When I divorced in 2022, I promised myself that my decision would not affect my children's sense of normalcy. I live in a rural area and it is the best and safest place for Emma. 

Bills began to build, and I knew I needed to get a second full time remote job, being the sole caregiver for Emma. It can be very stressful, but we manage. I sometimes struggle with not getting a break to just breathe, but I wouldn't change her for the world. Of course I had already missed many days of work while seeing the specialists for the autoimmune condition. Now I have 12 weeks of healing from open heart surgery. 

With it being summer, Emma is home with me which is great, but occasionally needs another caregiver to help with her care. I do not go back to work until September 8th, and since I needed to take caregiver leave for my mother who was also having medical issues earlier in the year, I do not have enough paid leave left to cover the entire 12 weeks. Any assistance is greatly appreciated.