My oldest baby girl is special. I didn't know until she was four, but she was born with a rare chromosome oddity. It's called Trisomy 9 and is so rare there is hardly any info on it. I've been very careful over the years how I say this, because we do not identify ourselves with this genetic problem. I have never joined any kind of support group or anything, because I believe in the healing power of the Lord. I believe the verse in Isaiah 53 that with His stripes we are healed.
Before I conceived Leiah in my womb I prayed for her as often as I thought of it, and for all my future children. When I did become pregnant I prayed daily over her. I was barely 20 years old when I conceived and therefore declined any prenatal testing to determine if there were abnormalities. It wouldn't have mattered anyways, we were going to have her regardless of what tests may have said. It wasn't until we were in the 5th month that the doctor noticed she wasn't growing like most babies and we started doing more testing. Still, we didn't know anything except she wasn't growing rapidly. My first pregnancy became a high risk one. But, our prayers were answered because not only did we make to full term, but she was healthy. She had some feeding issues, but other than that she was great.
Imagine if you will, a little girl who looks like any other, and you are talking to her only to realize she isn't speaking back. It's confusing, because she doesn't appear to be any different THANK YOU LORD!!! She has no physical deformities like many do. Or, noticing that it appears that this 11 year old girl has a diaper on...what about other children younger than her noticing these things and bluntly asking questions about it. Her feelings have gotten very sensitive and she gets them hurt easily.
This may sound like I'm complaining. I'm not really, just being honest about the challenge of this day in and day out. Think about this- for 11 years I've been wiping her booty. She is just now starting to be able to tell me when she needs to go and do it on the potty. This has been so frustrating for all of us over the years, and this is where her going to the special education program has helped us. They have helped me get her into a pattern and awareness that she needs to use the potty. They have taught her 200 american sign language signs that we can communicate with. Leiah understands me, but has a hard time speaking to me. Imagine having an 11 year old that you can't talk to about their thoughts and feelings, their likes and dislikes, what they want to be when they grow up and so on. Constant guesswork.
I know that I am not the only one with a special needs child and many have a lot more to deal with than me, but I know everyone around us has forgotten and doesn't realize how challenging life can be for us sometimes. We have to rethink going to the beach or a waterpark because Leiah gets overstimulated and they don't make swim diapers big enough. She needs more sleep than the others. She tolerates change less well :) As her body is changing, her moods and emotions are changing, yet she can't tell me what she is feeling. Some days are very very emotional, and others are fine. I never know what's coming.
Leiah is special, she is so loved by our family, church friends and her school friends. She is overall, sweet and content, and easy to please. She is human though, with weaknesses, like all of us. I never once thought I would ever have a child like this and neither did my husband. We have had to learn a lot, and much of it was unpleasant. But I am thankful she was born into a family of faith. Who knows what she would be like if she hadn't, and she has a bright future.
"For I know the plans I have for you,” says the LORD. “They are plans for good and not for disaster, to give you a future and a hope." Jeremiah 29:11
