Life With Trisomy 18

Last night I was thinking about what life would be life if Lillian didn’t have Trisomy 18. I thought back to her diagnosis and how devastated I was that she was going to be sick. I was scared about how our lives would change to accommodate for her needs, and even more scared of the thought of living life without her. I knew that one or the other would be how things played out. It’s been over 2 years since I became the mother of a medically delicate child. So last night when I was thinking about where we would be now if Lillian was “normal” I just couldn’t imagine life any other way.

So many times I feel like having a disability is looked at as a bad thing. We live in a society where different things are assumed to be bad. Being the mom of a medically delicate child has opened my eyes to so much. I, too, once thought that being differently abled or being the mom of a differently abled child would be absolutely awful. Life shook me around and showed me that is not. It’s hard. But it’s also crazy beautiful and wonderful and worth it. Life with Lillian has opened my eyes to an entirely different world—a better world.

The truth is, Trisomy 18 has shaped Lillian, and me for that matter. Lillian IS NOT Trisomy 18, but she does HAVE it. And it does make her who she is. She wouldn’t be the same without that extra chromosome. She is perfectly imperfect and I wouldn’t have her any other way. Would I take away the sickness? Sure. Would I take away the short lifespan? In a heartbeat. But would I change anything else about her? No. Having a child with different abilities is one of the best things that has ever happened to me. She has taught me so much about so many things. I could go on all day about it! She is THE sweetest, happiest child I’ve ever met. And I honestly don’t think she would have the same personality if she didn’t have Trisomy 18.

There are many many days that I say I “hate” Trisomy 18. And what I’ve realized is that it’s not Trisomy 18 that I hate. It’s death. And we are all going to die. So I choose her. I choose happiness. I choose positivity. And I choose to live despite the inevitable.

**If you are interested in learning more about Trisomy 18 or following Lillian’s journey, please check out her Facebook Page here https://www.facebook.com/trisomy18princess

 

Written By: Alivia Kraft

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