Being a mom of a child with special needs

I just thought I would write down some of my feelings and experiences so that if someone else is dealing with a similar situation they will understand they are not alone. It is very difficult to explain and to get someone to understand how hard it can be to have a child with a disability. Shannon is almost 17 months old. She doesn't say any words and doesn't understand any words either. She doesn't know her name or know what the word mom or dad means. She can't walk or stand. She can't really communicate with me what she needs or wants. She is just fine with her quite world that she lives in. She tries to take out her hearing aids dozens and dozens of times a day. She now hides and tries to take them out. We have about 12 appointments every month with different specialists. She has a hearing specialist that we see 4 times a month, a developmental specialist that we see 2 times a month, a physical therapist that we see, 2 times a month, a speech therapist that we see once a month, an audiologist that we see sometimes weekly depending on if Shannon has ripped them apart or if they themselves are having issues. Then we have the occasional appointment with the ENT doctor and her pediatrician. If she wakes up at night she is so difficult to soothe. For most kids the mother's voice is comforting but for Shannon you just have to hold her. Luckily she is overall a VERY happy child. She'll sign a few words but still gets them confused. It is so different teaching a hearing child sign than teaching a deaf child sign. I need to tell myself more often that I am strong enough for this but that is really hard to believe. At night I lay her down in her bed and tell her, I love you, even though I know she can't hear it. Her hearing aids starting having major issues after two weeks of having them. Our new audiologist at Primary Children's told us to stop wearing them for a little while. She has scheduled Shannon for another sedated ABR on August 7th. Heavenly Father has blessed me with such a tender mercy during this time. For the first time out of 5 pregnancies I do not have gestational diabetes. It showed up in the beginning of this pregnancy at 5 weeks but around the time I turned 11 weeks it went away. I continue to test every now and then to make sure it hasn't come back but I am so grateful that I don't have to concentrate on everything that goes into my body. I still test Shannon every so often with her hearing. I turn toys on behind her or I'll say her name when her back is turned but she doesn't turn around. Conner, Steve and myself were coming out of the hallway tonight and Shannon was looking down at something in the family room so she didn't see us and couldn't hear us. Right as we passed her she jumped so big, we had scared her without even meaning to. She thought it was pretty funny and started to laugh. She is starting to understand some gestures which helps. I had wondered back in the end of November when I had that miscarriage what would be going on at this time since I was due June 24th, now I know why. I am hoping after the seventh of August we will get her hearing aids in order and programmed correctly so she can start learning to make organized sounds and eventually learn to speak.