Facing the truth
When thinking about what to share with you today, I was struck with the memory of when I realized, on a conscious level, Hannah was not a typically developing child and there was something very wrong with her. I say "on a conscious level" because I believe I always knew something was different about her. In fact, the day after she was born the doctor came in and said he wanted to do chromosomal testing on her because she had some characteristics that pointed to a genetic abnormality. I readily agreed thinking there was nothing wrong. My baby was perfect even though she wasn't born with the instinct to suck and needed to be taught by putting a tube into her little mouth so it would stimulate her mouth and throat muscles to work. Even though her arms were stuck in a bent-at-the-elbow position for weeks and would not easily be moved. Even with that I wasn't concerned. She just looked like she was going to give a double high five. No problem. Nothing to see here. Walking the floors all night because she was screaming due to not being able to digest properly. Again, no problem. She's fine. I just need to watch what I eat since I'm breastfeeding. I can do that. My sisters' looks of concern when Hannah had no response to me walking into the house after being gone. The typical excitement babies show when mom walks into the room wasn't there. In fact, it wasn't there with anyone when we were out. The only time she smiled was when we were home by ourselves. Once again, everything is fine. Don't tell me there is something wrong with my baby. Her pediatrician isn't concerned so why should everyone else be? Well, that all came crashing down when she turned one. She was walking, but she was not babbling, there was little to no eye contact, and she would scream any time she heard particular noises at a certain pitch or when we were anywhere other than home. Something was wrong. I knew it. That was confirmed with her new pediatrician. This was the start of the endless cycle of specialists trying to determine exactly what was going on. This was also the day I began grieving for the child I dreamt of but knew I would never have.
If any of this resonates with you, I'm here to tell you you've got this and you are not alone. Take it one day at a time, sometimes one second at a time, and know there is light on the other side of it. Trust your instincts and reach out for help when you need it. Again, you are not alone.
So sorry you’ve been through this, but so impressed it are using your experiences to help others …
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