When I drop Caroline off at Kindergarten each morning I see the same beautiful children. The kids I am speaking about are welcomed by the loving special education teachers. Some of these children are in wheelchairs or utilize other medical equipment to help their mobility. It is evident that their bus driver, teachers and school administrators love them. Ryan, Jackson and I are often leaving the school building when these students are coming in. The smiles on their faces are wonderful, and each time I see them I think of Ethan.
The afternoon we took Ethan off of life support the Children's Hospital neurologist had told us Ethan was blind, deaf, would likely have severe mental retardation and would be unable to move. This information came at the exact time that Ethan's lungs developed the second and third pulmonary embolisms. I mean the exact time. The meeting had to pushed back for the attending neonatalogist to finish some procedure where he put a needle into Ethan's chest. It didn't work, clearly, and instead we learned that his lungs were failing him at the same time his brain was failing him.
The first five hours of Ethan's life, and longer, he didn't get enough oxygen -- because he wasn't tolerating any of the ventilators or the settings they were trying. That first night the neonatalogist asked us if we wanted them to continue to try to save Ethan, as his brain had likely suffered damage as a result. Josh and I looked to each other, then looked back to Dr. Van Marter, and said "YES." It would be our honor to care for Ethan, with likely special needs and all ... if it was God's will. I'm not going to sit here and write that that was an easy thought, or that I truly knew all of the challenges that would come with parenting a significantly special needs child for their entire life. But Josh and I did know that it wouldn't be easy, but with God's help and will we would love the opportunity to do so. Ethan was our son, and we loved him.
So I spent four days trying to acclimate myself to the idea that our son would likely be arriving to school in a wheelchair, to be met by the loving special education teachers. That we would likely have to move to a home that could accommodate Ethan's physical needs, as our condo likely could not. That Early Intervention would become a huge part of our life, as would several other services. And the day Ethan died, those needs dissipated. But my heart remains shaped by those thoughts, even if they were just for four days. I didn't get the chance to raise my son with special needs, but Ethan had them nonetheless. So each time I see a child with cerebral palsy, mental retardation, or other special needs I remember Ethan. I smile to myself, as those children are beautiful, just like Ethan was.
A few weeks after Ethan died I was sitting by myself (a rare occasion) at a little park, by the water, behind our church. I was just trying to breathe, in and out, without crumbling under the pain of grief. I observed a beautiful family, two parents caring and loving their adult daughter with special needs. The father walked his daughter down to the water, taking her to see the ducks. I have taken my older three kids to do the same there, on several occasions. I thought that that could have been me, taking Ethan to see the ducks. Sure, people may look at that family and see their struggles...which I can only begin to imagine how real and exhausting they are. But that day I saw the beauty in that family. The love those parents have for their daughter, and for one another.
At 20 weeks gestation Josh and I were told there was a strong likelihood that Ethan had a chromosomal abnormality, as assessed by an ultrasound. We considered whether or not we should have an amniocentesis. I had always thought I would never opt for one, as there are small, yet real, risks of miscarriage. For the family we chose to have the test (we thought bringing our 4th baby home in under 5 years would be a challenge, so we should educate ourselves in advance of resources that may be needed) and had to wait two weeks for the results. The results yielded no abnormality, that he was "perfectly healthy." Ironic that he was perfectly healthy yet died 2 months later. When we were waiting to find out the results a friend told me that people with Down's Syndrome are "angels on earth." Amazing how Ethan wasn't an angel on earth, but ended up being taken to be an angel in heaven.
I will always think of my son when I see people with similar special needs. My heart melts a bit, and longs as well, when I see the smiles of those I walk by on my way out of the school each morning. Ethan continues to shape me, hopefully into a better person and mother, and I am thankful.
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