If you've checked out our home page recently, you have seen the new look! This week I am introducing bracelets from The Joy-Hope Foundation. Excited isn't the word for it. It's more like excited humility if that is such a thing. I wanted to take the time to introduce you to Amy and Allan Benton and their beautiful family. I am so proud and honored to be sharing this story with you this week. Their story is one of love, joy, extreme sadness and hope and one that I believe will truly touch your heart. Please read along with me.
Eric was born just a month before my first child, on August 16, 2003. A beautiful baby, born 5 weeks early to the surprise of his parents. The first time I saw him he was in his car seat in the nursery at church. He was there, on time, contentedly sleeping and looking like a little angel. I remember looking at Eric and thinking about how wonderfully content he was and how his parents must be something to be admired!
That was one of the only times I saw that little baby boy because he passed away just a couple months later. My husband and I went to his memorial service, so beautifully put together with loving tribute to him. We did not know Amy and Allan but felt a connection with them because our boys were the same age. I remember seeing all the wonderful things they did with him in his short life – I remember the picture of him sitting at the wheel of a car with Allan holding him, just holding the wheel and being so happy. They created so many beautiful memories with him. We didn’t get to see Amy and Allan until the service was over and after we had picked our son up from the nursery. I felt like such a jerk carrying my son out when they couldn’t do the same thing, but they were incredibly gracious and responded lovingly to us and our son, even in their grief. Amy and Allan are a true picture of grace.
Eric was diagnosed as being partially deaf when they were still in the hospital after his birth. Although this was devastating to them, they knew that it was something they could deal with through sign language and other adaptations. The day after Thanksgiving 2003 Eric went limp while Amy was holding him. She and Allan rushed him to the emergency room as doctors made wild stabs at guesses as to what might be wrong. Amy, Allan and Eric experienced a roller coaster of emotions and experiences over the next couple of weeks as Eric went through periods of stability followed by deterioration in muscle tone and functional abilities. Eventually he was diagnosed as having a rare mitochondrial deficiency disease in which he was missing 99% of his mitochondira, that which creates the energy for your entire body and makes you function. It is amazing that Eric lived at all. Beautiful Eric passed away on December 16, 2003.
A year later, Amy gave birth to 2 beautiful baby girls, Emily and Alexa. They were followed 2 years later by a spunky baby, Elaina. More beautiful babies. Healthy babies. After 2 more years, Amy was, to her surprise, pregnant again. Another beautiful baby girl named Ava was born August 13, 2009, 5 weeks early. Ava, like Eric was diagnosed as having severe to profound hearing loss while still in the hospital. Her parents couldn’t help but feel that terrible feeling of dread, having lived through the beginning diagnosis of deafness already before. Ava followed a very similar course as her brother had before her, days of alertness and hunger followed by days where she would sleep and not eat at all. Amy and Allan painstakingly went through the process of having bloodwork done for Ava while waiting for samples from Eric’s bloodwork to arrive at the hospital so they could compare them with Ava’s. As time went on, Amy and Allan struggled under the burden of fear of what would happen to Ava and digging in with further detail as to what exactly happened to Eric – reliving his very short life. In addition, they now had 3 other children at home to care for and lead through the whole process with Ava. A very different reality than what they experienced with Eric yet all too similar. On their daughters’ birthday in November, Ava was admitted to the hospital with pneumonia. It wasn’t until November 11, 2009 that they learned that Ava did indeed have the same mitochondrial disease as her brother had before her, this time with a mitochondrial deficiency of 93%. After another courageous life, precious Ava passed away on December 18, 2009.
Waiting 3 months to “officially” learn of your child’s fate while knowing all the time what it will be has got to be a very crippling feeling. Feeling frustration, intermixed with hope and despair watching your child and wondering – will it end soon or am I being paranoid? – must lead to despair. Taking care of three beautiful girls who are healthy and spunky and extremely active and imaginative and full of questions is exhausting in and of itself, but answering questions like “what is happening with Ava?”, “I miss Ava – when will she come home?” And “why is her body broken?” is unimaginable. Advocating for your precious baby while physician and nurse approaches toward her change with every shift and people are telling you when and if you can hold her, infuriating. Not understanding what in the world is happening in your life would lend itself to hopelessness. Not so with this family.
It is true. - The vulnerability and fragility of this family could be seen as they were forced to wait, wait, wait for any sort of answers and then live in the results of those answers. As they struggled with not knowing how to lovingly and realistically shepherd their three little girls through losing their baby sister. As they experienced the shock, humility and embarrassment that comes with having a terminally ill child. And then as they dealt with the very premature death of not one but two children.
And yet the strength of this family is evident and really does strike you with awe. The grace they present their story with and the grace they shepherd and care for their little girls with stands out with great beauty. The motivation and drive they have to help parents dealing with similar situations is incredible. Their faith has not wavered, not in God, not in family, not in each other. Amy and Allan have fought for their family with the kind of strength that is only God given. And they attribute that strength to Him. They genuinely seek to share their hearts with others, not hiding, not presenting a fassod, but being authentic and transparent with those around them because that is what the truth is. They are delicate fortresses.
Be filled with encouragement and hope with the continuation of this story tomorrow as we talk about Amy and Allan's vision for the future.