This crazy roller coaster ride

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In 2007 I was diagnosed while pregnant with my son. I remember the dr calling and saying I had a rare condition called syringomyelia and I said syringo-what? I remember that phone call like it was yesterday. I was told I needed surgery ASAP but they couldn't do spinal cord surgery while I was pregnant. So they took my son by c-section 6 weeks early and did my spinal cord surgery. Now that was a living nightmare. Unfortunately I was mislead to believe surgery was going to be simple and he would "fix me" but that wasn't the case. I woke from surgery and had no feeling from the neck down. The day before I was in severe pain but I was still driving and working. At that point I was 31 yrs old, newly married and a newborn. After a month in the hospital the insurance quite paying and said I needed to go home. My mom had to move in with us to care for me and the baby. It was a very very long 2 yrs but I got some feeling back and started to drive again. I did have a few good years in that time but now I'm 39 and my shunt is clogged and they say I need another surgery. I'm not sure I'm up for this. I have been going from dr to dr trying to find someone who really is experienced in this disease. It's a tuff journey but someone's gotta do it. If your reading this you must have or love someone who has syringmyelia. Reach out for help. Study and study. You must advocate for yourself and stay strong. It isn't easy but there are some amazing people you can find to help guide you. Good luck and God bless!  Gentle hugs!!!