No One Knows

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.

Rant over.

7 thoughts on “No One Knows

  1. Hugs… we also have a special needs child (actually a couple) with a dual diagnosis of Down Syndrome and Dandy Walker Malformation. Our little one is 2 months old and has had 3 surgeries. She will also be having heart surgery next month so I can relate to some of your worries and fears. We will keep your family in our prayers!

    Liked by 1 person

    1. Wow ! To read that gives me a sense of comfort to know it is someone out there who understands and feel my pain. To see the word Dandy Walker .. surgeries . Would love to connect with you one day! Thanks for the kind words❣️ I will keep you and your family in my prayers also

      Liked by 1 person

    2. Thank you so much for this !! It’s amazing when someone can relate to me or share their story with me ❣️ it’s always amazing to know I’m not alone! I remember the anxiety and fear I had when my baby went into heart surgery both times! I will keep you and your family in my prayers also! I hope everything goes well and your daughter has a speedy recovery .

      Liked by 1 person

  2. Fay you are a very strong super mom , I work with adults that have special need and it can be a challenging at times but to know that they have so much potential is amazing . She is a gift from god and we all know that god love to challenge his soldiers . It is ok to cry because u are only human but because u are so strong and loving and kind and smart your blessing will always follow through .

    Liked by 2 people

    1. Thank you so much for this lil bit! Thank you for reading my work and for your kind amazing words. My baby is a blessing and she will continue to flourish ❣️

      Like

    1. Thank you so much! I’m so glad my writing reached others and others can relate! I’m always here if you ever need to talk. Sending prayers .

      Like

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