Real Moms Share: Joshua’s Success Story
Joshua’s Success Story: The Words I Didn’t Want To Hear
Some times, I am still stunned where he is in life. I watched as Joshua opened up his recent book order from Penn State University (he ’s in their online Applied Statistics program trying to obtain his Masters of Science degree), he eagerly gets ahead on his optional reading. It’s how he accomplishes what he does. Still, I thin k back on how we got here; it was not an easy road.
Joshua was born prematurely after a very difficult pregnancy. I had early placental failure and had ultrasounds every other day to try to garner as much fetal maturity as possible before my placenta completely failed. At 34 weeks, Joshua was delivered weighing 4 pounds and 11 ounces. His little cries and squawks were music to my mother’s ears. Then came the words I didn’t want to hear. The doctors came into my room and as quickly as my joy had arrived, they told me everything that was “wrong” with Joshua.
I remember feeling like my heart had been ripped out. They were saying things like, “brain damage”, “oxygen depletion”, “birth defects”, and “syndrome” . As a young mother, I tried to take all of it in. I cried, I prayed, and ultimately I found an answer from God, “Love him the way he is” . That was my answer and that answer would be applied over and over and over throughout his life.
Over the years, we would get a diagnosis or observation here and there: FG Syndrome, atypical seizures, PVL, movement disorder (palsy), syringomyelia, von Willebrand’s Disease, Ehler’s Danlos Syndrome, ASD, hypotonia, and a myriad of birth defects and systemic issues, many of which needed surgical intervention.
Failure to Thrive
I think the hardest diagnosis of all was the one termed, “Failure to Thrive” . I remember how that felt so utterly devastating to me, as though Joshua didn’t want to do well in life. It felt so judgmental as a diagnosis. I knew it meant he was undersized and not meeting benchmarks for progress like eating, walking, or talking.
Sure, he was slower to walk; he didn’t do so until nearly 2 years old. However, we took great joy in his rolling underneath our bed and playing his own game of “tag” as he would turn over out of my reach. Joy was always in the moment and never measured by what was “typical” .
The hardest thing for us was not hearing him speak. We did years of therapy and I always cringed on testing days which showed him “profoundly delayed” in speech. I just prayed to God that somehow, someway he could just say, “Mom” and “Dad” . He was so frustrated by the inability to speak. We tried to just communicate in our own way and for Joshua that meant blinking yes and no; it meant asserting his wishes by actions; it meant an afternoon of reading time. He would go and get his favorite book and bring it to me to read. One day I fell asleep after reading the same book 4 weeks in a row. As I was reciting the poem and nodded off…l heard a little voice by my head recite the end of the sentence. I was sure I was dreaming. I wasn’t. I pretended to sleep over and over and over and with the same results. The rhythm and cadence of that special book brought his speech out and I cannot explain it other than a pure miracle!
We learned through his acquisition of speech that he could also read already, which was amazing to us. All of that knowledge had been locked behind a world of silence. Oh, how we wished sign language had been an option presented to us back then!
We had higher hopes that we could possibly put him in school. I knew we would need to obtain an IEP and deal with any sensory issues that might arise. His teacher was amazing! The staff was wonderful, however, Joshua was not “thriving” . That same word was describing our experience yet again. After months of trying to get past severe sensory overload, it was suggested that maybe we should home-school him. It doesn’t take long after relating this experience before friends gasp that we were not offered more options. I do not think the school meant to be, in any way, unkind towards Joshua. They were looking at our whole family and the medical and surgical needs presenting and tried to find the best option.
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