Normal. What does that word even mean anymore? There was a time where that was all I wanted...to be normal, to live a normal life, and have a normal husband, with normal children. What was I thinking?! I am so glad our life is anything but normal. I think if we had a "normal" life, I wouldn't look at this picture and see the sincerity in Ellie's eyes, the innocence in her disposition, or the compassion in her hand. I would take for granted being grateful, take for granted the miracle that is life, and I would miss out on truly celebrating joy and fighting the battles of life.
You see, our life is far from normal. We are busy, worried, proud parents that want our daughter to reach her full potential just like most every other parent I know. But, a teeny tiny deletion on her 15th chromosome could potentially hold her back from living that fullest potential. And, it has caused our life to be anything but normal. We are regulars at doctor's offices, and have known nothing but therapy for our child since she was born. We give her an injection every night, lie awake at night thinking of new ways to raise more funding for PWS research, read every article/post/blog there is on PWS, travel the country to attend research conferences with people that get it, brainstorm ways to talk with friends and educational professionals about a rare disease that, if I'm honest, most people will never be able to fully understand. We learn to cook differently, spend countless hours packing lunches, snacks, and dinners that are "Ellie safe," inundate news feeds and time lines during May to hopefully reach one more person about PWS, continue to grow and strengthen our marriage because if we neglect it, it could become disastrous. We translate what our daughter is saying to others because they can't understand her. And we explain the "allergy" to sugar and carbs when our daughter is eating things that raise eyebrows. We arrange weight checks and blood-work when our 3 year old seems to be gaining a little bit of extra weight. We worry about where our daughter is developmentally, if she will continue to make friends. And try everything in our might not to fear the future.
Parenting is the hardest job on the planet. Hands down. We all have and/or will have our trials in life, and I would argue that we all lead far from normal lives.
What type of life do you want to live?
Look at Ellie. She's anything but, normal. She's extraordinary.
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