Hello, I am Heather, Payton’s Mommy, and I am the one writing, and publishing, this blog. What I’m trying to do with this blog is not only share our families’ story and Payton’s with the world, but I want to try and convey how Payton sees things. You see, I am very blessed to have a special, almost “mind-reading” type connection with Payton; I am truly grateful for that, as she is non-verbal, and being able to anticipate what she needs when she needs it helps a great deal in ensuring that she is happy.
Don’t get me wrong – like any other child, we have bad days, too. Sometimes she gets frustrated because she can’t communicate very well, and she will have meltdowns. Those days are hard, as it makes my heart hurt seeing her upset, or in pain of any sort. She is very intelligent, and understands everything that goes on around her, and what is said to her. Just recently (on Halloween, of all nights), I watched her observing all the children running around the neighborhood, laughing and yelling, and she turned and looked at me with this look….of confusion, and hurt, and frustration – I realized in that moment, that she was silently asking me “Mama, why can’t I do that, too”?
I felt my heart shatter into a million pieces in that moment, and it was all I could do to hold the tears back. You see, Payton is very sensitive to energy, and the slightest tension or negativity, and she becomes very upset, sometimes even angry. So instead of letting her feel the pain in my heart, I simply held her, and stroked her hair, and kissed her all over her face until she relaxed again. And our Halloween ended beautifully.
I’m going to stop here for a moment, and give you a little background history on Payton.
My pregnancy progressed like my first pregnancy did, and yet….it was different. I remember feeling anxious all the time, and thinking that something wasn’t right, and I constantly asked my husband “do you think something’s wrong with the baby”? He would assure me that everything was fine, and still my worry persisted. I was chronically fatigued throughout the whole duration of my pregnancy, with no reprieve. And Payton’s movements….they would be so sudden and repetitive; so jerky, and spastic, that I would literally become sick to my stomach. There were no gentle rolls, or little kicks here and there, or moving to a different place in utero. She would almost always chill in the same place, and her movements were always explosive and sudden, and would last for longer than I could keep track of. She was born in July of 2008, 10 days early, and her birth story alone was a nightmare. When she was finally ready, she came into this world so fast, that the doctor was barely able to catch her in time. As it was, he only just caught her by the ankle, and actually swung her under the table. Yes, I’m serious. When she was born, she was absolutely silent; no crying, nothing, save for a tiny squeak. She was immediately rushed into the nursery and away from me, as she was covered in meconium (the first stool, which is generally not passed in utero), and they were concerned that she had ingested some into her lungs, which could cause health and developmental problems. Less than 12 hours later, she was so severely jaundiced, that she was immediately placed under the phototherapy lamps. The doctors ran tests, and were completely mystified – they could find no identifiable cause as to the origin and severity of the jaundice. Her pediatrician at the time, pulled my husband aside in the hospital, and warned him that there could be developmental issues down the road with Payton, due to the jaundice.
The first few months of her life were difficult, to say the least. Payton was insanely colicy – she would scream and scream for hours, sometimes days, on end, leaving me with little sleep, and an even shorter temper. It was frustrating not being able to soothe her when she was fussy, and even harder with the lack of sleep. I wondered sometimes, felt it in my heart, actually, that something was different with her – it wasn’t just regular colic. It went on for months and months, and seemed to progressively get worse….
Then one day, it was like someone flipped a switch, and she just got….quiet. Really, really quiet. She wouldn’t cry, she wouldn’t coo….nothing. It was one of the strangest, scariest moments in my life. We realized then, too, that she was not developing her motor skills very well – hardly at all, actually. At her nine month check-up, we expressed our concerns about her development with her pediatrician, and he mentioned the possibility of physical therapy. When we asked him about the jaundice at birth, and the possibility of complications from that, he flat out told us that her case wasn’t severe enough to cause developmental problems, even though he had specifically mentioned that distinct possibility in the hospital at her birth.
Yes, I am serious again. We still are not sure what happened here – if the doctor didn’t report the circumstances in her charts right, or what. Whatever happened, there is no public record of it, even though my husband and I can attest to the severity of the circumstances, and what we were told by doctors and hospital staff at that time. However, it’s one of those cases of our word against that of the medical personnel…..and we all know how that goes.
By time Payton was a year, we placed her in the Birth-3 physical therapy program through the state of Washington. She had physical and speech therapy once a week, every week, and we began working with her more at home, as well. We had just begun genetic testing, and had received a loose diagnosis of Cerebral Palsy. She was also diagnosed with mild microcephaly – small, slowly developing head; in other words, the growth and development of her brain was slower than normal. She also fit into the Autism spectrum, and had Sensory Integration Disorder. At this point, we had already been through a couple of doctors, and didn’t like either of them, so we were on the hunt for another. The doctor we found in the middle of all this was excellent for a very brief period of time, but it wasn’t long before we started noticing changes in him. He would brush off any questions or concerns I voiced about Payton, telling me she would outgrow her “quirks” and “disabilities” and would rush me out of his office as quickly as possible. He refused any formal diagnosis, even though the state medical was screaming for one, or they would drop Payton. As a single income family, with several other dependant children, we could barely make ends meet on a good day, and we desperately needed the medical. Because of the doctor’s failure to cooperate, and work together with our family to get Payton a formal diagnosis, the state medical dropped us, and we were not able to get any help from the Department of Developmental Disabilities, either.
It was a very saddening and frustrating time for our family. Once again, we went doctor “shopping”.
We finally struck gold. A female pediatrician, who loved and studied special needs children, and preferred caring for these beautiful souls more than “normally’ developing children, asked to take Payton on. She had heard of us through another family with a special needs child. She genuinely cared, and listened to us, the parents, and was a huge advocate for Payton in trying to obtain medical care. We still encountered problems with state medical, and even though she was frustrated at that, she still continued to care for, and do research for Payton, and the family. She didn’t push more genetic testing – by this time, we’d been through the hoops several times, and were tired of putting our daughter through the agony – and also confirmed the original diagnosis of Cerebral Palsy. She went above and beyond what any doctor had done to date, and the care and compassion she showed towards my daughter during our visits to her clinic warmed our hearts. She was absolutely touched by Payton, and still continues to be her doctor to this day.
Payton ended the Birth-3 program a little over a year ago, and our family made the decision to take on her physical and speech therapy here at home. I am fortunate that I get to be a stay-at-home Mommy, and I love caring for Payton. Our only frustration is we still cannot get the medical help and coverage for her that she needs, and being a single income family, it definitely stresses us out sometimes. Payton has needed valuable equipment so that she can learn to walk, and speak, and the costs for special needs’ equipment is enormous, to say the least. We have recently begun organizing fundraisers via the Internet, and our community, and the reaction has been nothing short of incredible. In the first few days alone, we were able to raise enough money to purchase her own Rifton Gait Trainer, a special therapeutic walker that will enable her to gain more strength and motor control in her legs, so that someday soon she might be able to walk. A beautiful family over on the coast, who also has a special needs child, heard of Payton through the Internet, and donated a wheelchair for her. Both of these will be here this month, and our family is overjoyed – finally, after years of struggling and heartbreak, we are finally getting somewhere in our cause for our little girl. Someday, Payton will need other things, like leg braces and a communication device (we are trying to raise enough money for this one as we speak), and our hope is that between family, friends, and the community, all of this will be possible. We want our baby to succeed, and have the quality of life that she deserves.
We are grateful for the compassion and help of those that have taken Payton’s cause to heart, and continue to do so. We are truly blessed to have these incredible people in our lives, and this world.
Back to the blog itself – I want to not only share Payton and her journey with everyone, I hope to advocate for other families that have children with Cerebral Palsy in the process; I also want to help educate others who are in the dark about what CP is, and how it affects thousands of children and families throughout the world. I hope to offer a beacon of hope to those that have struggled, like us, with the costs of medical care and vital equipment these children need for their success, and possibly meet other families with beautiful kiddos just like Payton.
My ultimate dream with this blog, however, is that someday Payton herself can take it over, and truly speak for herself, sharing her experiences, her joys and her sorrows, and the lessons she’s had to learn and overcome, with the world. I truly believe that she will do so, and I greatly look forward to the day when that will happen. In the meantime, I will do the best that I can to tell her story for her, and hope that somehow, somewhere, her story will touch, and teach, others.
Thank you for all those that support, and cheer, Payton on. Without any of you, none of what we’ve achieved for her thus far would be possible. I am forever grateful to all of you. xoxoxox