February is heart awareness month. Some people associate it with Valentines day but people with CHARGE syndrome and some other disabilities it relates to congenital heart defects.
I am lucky my heart is normal but many CHARGERS have heart problems. I did have a murmur when I was little and when i am unwell or haven’t had anything to eat my blood pressure drops but will come back up quickly.
Heart defects can vary from a hole to big problems with arteries or veins also some can even have bits missing. My veins are bad just because I’ve had so many lines and needles over the years.
When i was about 14 or 15 doctors had to insert a line directly into my heart where I received IV nutrition until I was 17. When I was 17 I got a fungal infection in the line and needed massive antibiotics to make sure my heart was ok. They removed the line and everything was back to normal.
I am lucky but many are not so lucky and require many surgeries and some even die. It can be hard for these families but I love seeing how they come through all their problems. They are very inspiting
I follow many CHD families on facebook and Instagram. Most of them have CHARGE. I love all of my CHARGE community. Everyone is so supportive no matter what. Everyone shares the same emotions and feelings and there is so much love. Last years conference theme was deep in the heart of CHARGE and to me that was fitting because deep in the heart you will find your community of people that get it. I love how people come together even when you have never met face to face and it is like an instant family reunion of people from all walks of life and places.
So this month like always I will keep my CHARGE families in my heart.