“The tears streamed as we tried to explain for the fourth time how to add fractions to our academically delayed, head strong daughter of 14 years. She had always been behind, but that didn’t really matter. In fact, did fractions really matter? Maybe, maybe not. Who knew then how little those fractions would matter.
Let’s go back to 14 plus years earlier. There was zero chance that Darwin and I ever expected to fall in love with a tiny little baby that wasn’t ours (yet), but that’s what happened. A crazy April phone call in 2005 from Darwin’s mom that she was taking in another foster, this time a little baby that had just had open heart surgery. ‘Are you crazy’ was one of the multitude of questions we threw at her. What foster system would send a three-week old baby with cardiac issues to the home of a 60-year-old widow that had two very special needs foster children already, both teenagers. One child was wheelchair bound and tube fed and the other a behaviorally challenged delayed youngster. Three weeks later, we drove back to our hometown and met this little angelic wonder. She was so fragile, wires connected, special thickened formula in her bottle and not wanting to be held at all. But hold her was what I wanted to do; she needed a mom. She needed a dad.
Less than three years later, we had moved, changed jobs, became foster parents and adopted her. Amie Leann was our second time around baby. How we got there was quite a complicated road as well. Darwin and I met initially in 7th grade but began dating in 11th grade. That’s a story for another day. As seniors, we found out we were expecting and got married sooner than we had planned. Chris was our first-born son. He had a heart as big as the world and always saw the best in everyone. Our second born was Jonathon. Jonathon was born with severe brain injury from birth. He had a very difficult five and a half months on earth. We lost Jonathon one night. How heartbreaking to suffer the loss of a sweet soul like our Jonathon. A year and a half later we had our tenacious Tim. We found that Tim had cerebral palsy around a year and a half and later we learned that he was also autistic spectrum. Tim had a really rough childhood, as we navigated understanding the challenges of autism without the help that is available now. When Tim was three, we had another baby, Jeffrey. We found that Jeffrey had kidney issues while I was still pregnant with him. We were only given a 20% chance that Jeffrey would survive if he made it to term. Well he surprised everyone and continued to grow and did fairly well. Unfortunately, when he was finally born, his little lungs couldn’t support life. He struggled for two hours and then left this world to join his brother in heaven. We were devastated.
The next 15-20 years were just two people growing up, raising their family. Darwin got a good job at the university after leaving the Army. I got a two-year degree in radiology and worked at a community hospital that I loved. Then that fateful phone call in 2005. Oh, how that phone call would change our lives. We were contemplating what empty nesting would look like. Chris was in community college and Tim, was in his final years of high school. We had begun checking into community services in neighboring communities. And then Amie happened. The old saying that you don’t know what you’re missing until you’re missing it. A truer statement could never have been said.
Amie became Princess Amie. Doted on by all that knew her. She had a way of wrapping every person she met around her little finger. Fairly quickly we realized that Amie wasn’t like our other babies, nor was she like other little girls as she grew. Amie was feisty, opinionated and had a personality as big as the sky.
If she wanted to wear pink shorts with a green shirt, she wore pink shorts with a green shirt. If she wanted to wear a Christmas sweater in July, she wore a Christmas sweater in July. I would pack away seasonal clothing and hide them in places I didn’t think she could find them, but she always found them. And we usually let her just march to the beat of her own drum. Eventually we found that Amie had quite a host of medical issues to deal with. Even before we adopted her, she had already had two open heart surgeries and there were more in the future. Amie had a genetic syndrome, 16p11.2 deletion, she had seizures when she was younger, had a laryngeal cleft, paralyzed vocal cord and wore a CPAP for sleep apnea.
I could write for days about all the amazing things that our Amazing Amie did in her short life. But for today, I want to share what I think the message that I am feeling pulled to share is. You see, we lost our precious Amie two short months ago. Two agonizing months ago. Our fierce, spunky, opinionated girl didn’t survive her fourth open heart surgery.
It was a surgery that we knew was coming. And we knew she was in the best hands possible. Her surgeon had not lost a pediatric patient in almost two years. The statistics were astounding, her heart was a mess and if she had a chance to survive this surgery, it was with this surgeon. Try as he and his team might, it wasn’t enough, we lost her. But her messages are still here, we are still hearing from her on a regular basis. And what are we hearing and sharing? That you need to live in the moment. Take time to do the silly things. Take time to do something that doesn’t require electricity. Make memories that will last a lifetime, because none of us know how long a lifetime really is. Our amazing Amie lived life that way.
It’s true, we catered to her more than we did when we were younger parents, she benefited from that for certain. But we also had seen how fragile life is and that nothing is guaranteed. So, when she wanted pink in her hair, she got pink in her hair. When she wanted to jump in the pool fully clothed, we let her jump in the pool fully clothed (and jumped in with her). And before each surgery or procedure, we did something fun and exciting, just in case. Just in case happened this year.
We were fortunate that we worked with some great educators that listened to our concerns about what was important for Amie’s future and even though her future only lasted 14 years and 89 days, what mattered most wasn’t fractures, wasn’t math, wasn’t reading, it was the people she touched that are to this day still remarking on what an amazing soul she was. Let them march to the beat of their own drum, for however long that drum will beat.”
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