I’m so frustrated but have no one to talk too. Yes of course someone will listen and tell me they understand but they really don’t. No one I know knows what it feels like to have a really sick child. To not know their child’s future, expectations, or life expectancy. No one knows what it feels like to be told twice your child isn’t going to survives. No one knows what’s it’s like to have a child who doesn’t know how to eat by mouth because eating, latching was a work out for them. Having a child too weak to eat. No one knows how to place a Gtube, shit most don’t even know what a Gtube is. No one knows what it’s like to spend months and months in a hospital with their firstborn. To only be able to spend a few seconds or minutes with them after hours of labor. Some heart moms don’t even get a chance to hold their babies until a few weeks or months later. We don’t know if our babies will need open heart surgery soon as we pop them out, at a few days old, or if they will even survive the surgery. The first surgery, out of three is the most complex. Plenty of babies don’t make it or suffer serious conditions such as silent strokes, or seizures. No one knows what’s it’s like to see your baby in distress, crying but you can’t hear them or comfort them because they have a breathing tube down their throats. Some heart babies end up having a paralyzed vocal cord(s) due to surgery, which takes months to a year to recover. No one knows what’s it like to have a delayed child due to 157 days in the hospital, 2 open heart surgeries, a missing Vermis, and a genetic disorder. To have a child that has so many things working against her. To be told your child may never walk, or talk, and might be autistic. No one knows what it really feels like. No one actually really understands. No one knows what it’s like to raise a special needs child. To know what they want, and need by facial expressions, body language, and sounds because they are non-verbal. No one knows the time, patience, knowledge, and faith it takes to raise my child. No one knows the pain I feel. The worry I feel. And the anger I feel at times. No one knows how I don’t think about me, or have time to cry or complain because it’s just no time for that. How I barely had time to just sit and cry! I just do it. No one knows how much I dislike when someone says “ sorry this or that “. My child is nothing to be sorry about. Don’t feel bad for me because I don’t feel bad for myself. My daughter has survived both surgeries, doctor’s expectations, heart failure, and is kicking Jacobsen Syndrome ass. This is MY normal. She is perfect for me. Being her mother makes me special, in every kind of way! And God knew exactly what he was doing when he made her my daughter. My daughter has shown me the definition of unconditional love and gave me my purpose in life. She taught me what’s worth it and what’s not, and has shown me how strong I really am.
But as a heart mom, I get tired. Frustrated. I still worry and sometimes need to cry.