Saturday, November 26, 2011

Living With Special Needs

Living with special needs isn't easy, but things about it can be positive and rewarding.

I just checked my comments and got one that sincerely touched my heart. It was the post on mental retardation. The anonymous commenter said this:
i am new to your blog, and this post really hit home for me. i have a 13 month old daughter with a duplicate on chromosome 8p23.1. she has hypotonia and will also have mental retardation. i am totally NOT where you are at emotionally and psychologically. in fact, i am in a very bad, sad place and i am angry at God. i have been a christian for as long as i can remember, and well, i feel sad all the time. i have not been able to rejoice in who she is and how far she has come. i just mourn in what she isn't doing and how sad i am that i don't have a typical daughter.

we found out about her duplicate only 6 months ago, so i know i need to give myself time. but man, it is so hard. thank you for your post. it is encouraging to think about mr in a different way and to know that as a mom, you can still have joy and happiness. you seem so... normal. :) thank you! i am going to follow your blog closely. 
I have to say, I totally understand where you are. It did take longer than six months to get to acceptance and renewed faith in God. I can't say how long it took exactly, but I did get there and you can too. If my post in any way encouraged you in your walk in life then I'm just thrilled! No one expects to have a special needs child. You get pregnant and you have all these dreams and plans for a normally developing child. When things aren't right it's easy to say, why me? Why my child? Some people may think finding cliche sayings and standing firm on faith is just a way we Christians deal with things. But I seriously believe with all my heart that God trusted me with Anna because he highly values me and my ability to raise her. It's quite a compliment. I don't have answers as to why it happened to her. Her duplication is de novo....meaning not passed down from either parent and no apparent source it came from. Just a fluke so to speak. your daughters may be as well.

You may get LOADS of advice from people, but if you ever have questions from someone else who's going through the same thing...I'm here for you. If I started now this post could get super long. But I will say as far as mental retardation, it's not so scary. When you can come to a place where you forgive God and put your faith and trust in Him again (Yes, I had to do that too. I'm not sure I was angry with Him..I guess I was, but it was more that I just didn't understand WHY He allowed it to happen, so I still had to forgive God as weird as that sounds.) you can start to exercise that faith for your daughter and see the amazing things we have seen. Anna understands in some ways she is different, but it doesn't really seem to bother her. Maybe because we don't act like it bothers us or like it's a big deal. We are...."normal" a degree. We have a special needs child and that means there are things we can't always do that people with normally developing kids do...but we still have loads of fun and lots of love. Anna melted my heart the other night. She says, "I think" before her sentences a lot like "I think I'm hungry", or "I think I want to watch Jonah". So she said to me, "Mom, I think I love you so much.". What a sweetie. Also, she pronounces "mom" as "nom".

There are lots of challenges still, but I have come to a place in my life that I don't live it focused on the special needs. We focus on the Lord and having the best life possible...and oh yeah my child also has special needs so I need to make some adjustments at times. Life is so much more fulfilling that way. It really is. God bless you and your family, and please let me know if you have any further questions or concerns you'd like to discuss.

1 comment:

  1. ohhh, thank you for responding to my comment. you are such a positive person, and i feel like your faith in the Lord and all the 'why' questions have been settled for you. i pray that at some point i will be able to be at the same place. right now, seeing typical kids my daughter's age breaks my heart and causes me to tail spin into a deeper depression. i have not accepted that this is my new normal and i am full of grief. but i have had more moments of happiness recently. laura, i have so much to write and say, but i am not going to do it in the comments area. if so inclined, i will 'harass' you with a personal email. :) take care, and thank you for responding. i look forward to reading more updates about your children.


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