From time to time I am guilty of thinking what would are world be like if Lily was born without that extra chromosome. Usually, these thought are triggered by coming in contact with a child of Lily's age. That is when i usually realize what Lily would be like without the extra chromosome. She would be taller. she would walk more gracefully. Her features would be more pleasing to general society. She would be able to communicate with words. She would understand reasoning. She would be able to express her stresses and joys! She would be able to go outside and play with friends. She would have friends! Her world would be so different, as much as our world would be. Fortunately, she doesn't know how her world would be different. she is, who she is, "LILY"!
My life would be different. I would be more active with the kids, go places freely, because there would be no fear that Lily would plop all 80 lbs of herself down on a dirty floor because she wasn't understanding why................(and this was a problem even at 20 lbs), when they don't want to move, you can't move them! I would have a peace of mind that if anyone hurt her in any way she would be able to tell me! Another big change would be I would be able to feel like an accomplished mom! I have to explain this one! On a daily basis our children has needs, all children, Ds or not, and as mothers we tend to those needs, whether it is physical needs or emotional. And to feel accomplished, is to meet all their needs. But with Lily it is only when she will let me. If she wants a cup of water, and she doesn't want to receive it from me i have to get her sister or someone else to hand it to her. If Lily falls and hurts herself, as a mother the first instinct is too hold her and tell her it will be ok. But with Lily, most times she wont let me comfort her. If I want to look at her with a lovingly mommy look, you know the look that tells your child you love them and are there for them in one glance, and Lily doesn't want to be looked at she will let me know by holding her hand across her face! Even simple thing like tucking her in at the end of the day I am subject to rejection! This all hurts so much! Makes me feel like a failure. I just want to soak her in my love and care! As I pause of how different my life would be I realize there is nothing more I would want to have different
Lily with one less chromosome, would be able to communicate about how her day was! What her friends name are. what she had for lunch. If anyone was hurting her feelings. If she needs anything for school. And the most important thing that i so miss would be to reason with her! Oh yes, the Lily with one less chromosome would be able to understand that you can't take 3 backpacks to school! You can't color yourself with markers during class! You can't brush your teeth before you eat! The one less chromosome Lily, would understand when i said you can't wear a tutu to school! She wouldn't roll on the ground and not move if she didn't get to do it her way! This Lily with one less chromosome would let me comfort her and look at her with my lovingly mommy look! She would love me even if everyone else was around! I would never be told "no mom, get out", when i tried tucking her in at night!!
If Lily had one less chromosome she would be different, our family would be different, i would be a different person. I would not have that daily dose of wonderment and joy that she can bring to us! I think of all the times i have been so frustrated with her because I could not reason with her only to laugh later when all the craziness had passed! Everyday there seems to be such an accomplishment made by her a milestone met that makes my heart so happy. It keeps my spirit lifted. If she didn't have that extra chromosome i think life would be so stale! How many parents can say there child is so proud of the homework they do? The Lily with one less chromosome would not sit for hours doing her own thing. She would not be able to be real and true to her feelings. She would not act like everyday is like Christmas morning waiting to unwrap the day that she knows is full of gifts for her whether it is a new number she can count to or remembering to stay dry! her day is so full of gifts! Which makes my day full of gifts, too!
So, whenever i come across a child her age and wonder what Lily would be like if only she was born with one less chromosome, I than turn it around and think what we would be missing out on if Lily was born with one less chromosome!
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