Porter: Age 3
Aware of Angels-Photography
Porter is so so sweet and has a contagious smile!! I loved working with him and his amazing parents-such a beautiful family.
Porter is currently undiagnosed with his medical condition…
I had this picture of my life in my head. It looked a certain way. I would go to college, get married, have kids, one day buy a house… a pretty typical list. It just seemed so simple. So I did just that. I went to college, eventually got married. And eventually had a baby.
It was July 4th, 2013. I was pregnant. VERY pregnant. Somehow my husband convinced me to squeeze in a swimsuit at 40 weeks pregnant. My water broke in the public swimming pool, and off we went to the hospital. Everything went perfect. And there I sat holding my new little boy as fire works went off out the window. I look back at that moment and how I was happy. Genuinely happy. My life was going just how I had pictured.Fast forward a few months. My baby was so fussy, wouldn’t breastfeed very well, cried all the time, wasn’t tracking very well with his eyes, was very gassy, and wasn’t rolling or holding up his head very well. At night I would rock him in his chair and just wonder, “ Is there something going on with my child? Am I just crazy? Who is this boy going to be?” We took my son, Porter, to doctors. They told me I was a first time mom and it was probably just high stress and anxiety. He looked fine. I look back at that moment, and sadly I was right. Something was very wrong with my son. It only became more and more evident the older he became.
By Porter’s first birthday, we had already done so many tests. MRI’s, blood tests, mitochondrial testing, genetic testing, and many more. All had come out normal. We had started multiple therapies. We joked about Porter now having a “team” for him. He was in PT, OT, speech, feeding, and vision therapies. I had even resorted to some holistic approaches. Still, therapy did very little, and doctors could not tell me what I should do to help my child.
Fast forward to today, and things unfortunately have turned out way worse than we could have ever expected. Porter is very low tone. He can not lift his head at all, sit independently, or even roll. He is 100% immobile. He has something called Cortical Vision impairment, where sometimes his brain does not process what he is seeing. He developmentally is a 3-4-month-old in every area but living in a 3-year-old body. Because of his low tone, there are many more issues starting to appear with his bones, hips, feeding, digestive system, respiratory system, and many more. We have seen over 18 specialists and flown around the country to still try and find a diagnosis.
My life has not turned out how I had pictured, yet this new picture is different, but just as beautiful. A couple years ago, if you looked into my eyes, you would have seen pain, heart ache, and fear. Although those feelings still creep up on me every once in a while, they do not consume me anymore. I feel happiness, love, and hope most days. We love this little boy with all of our hearts and hope others will be able to see and feel that love as well.