children
Children: Our most valuable natural resource.
My Child Is Not Broken
"She doesn't look autistic," says the well-meaning person. "If I didn't know, I wouldn't even be able to tell," she says again as to lend me some sort of comfort in the appearance of my child. "What does 'autistic' look like?" I wonder to myself as I smile and say something passive such as "well she is". I know they mean the best. I know they want to help. They don't see her cry and cover her ears in shear terror because she can't find the things she had strategically placed. They don't notice her, outwardly shutter at the thought of a change in our everyday routine. I do. I am here when the dark clouds roll in and the ear-piercing screams begin. I have watched her watch 18 hours of a single Netflix show and endured hell when they removed it. I have sung the same song or commercial jingle over and over until I wanted to poke pencils deep into my ears to make it stop. But no, she doesn't LOOK autistic.
By Aleea Whitmire7 years ago in Families
Dear Daddy
Hello Daddy. Welcome back home after being away for two weeks on the oil rig working for your family. I’ve missed you; I have grown so much since you last saw me, two weeks ago; but you didn’t ask how I was doing, didn’t ask for photos or cute videos of me, or even ask how your three stepchildren were doing. I felt sad but figured maybe you were busy with something important at work or tired.
By AKSweety907 Angel7 years ago in Families
Parenting
I have two kids. They both have the keys to my entire heart. He’s like a tiny best friend to me. We essentially grew up together. I had him right after high school. It was he and I against the world. When he was four I became pregnant with his now younger brother. Now, I don’t want you to see his tiny best friend and think that I’m the ‘I want to be your friend’ type mom. I’m not. There are boundaries. I am mama, first and foremost. I want him to know that he can talk to me about anything though!
By Elora Thomas7 years ago in Families
Immortality
A little kid as I was, I still remember: I tightly held onto my father's fingers, just learnt how to walk. Now, as it was my turn, I am supposed to guide her, help her get up whenever she trips. But what am I doing? Looking down at the contract that Sarah would be no more in a few days? ...and... sign it?...
By Silma Suva7 years ago in Families
The Answer, the Diagnosis, the Heartbreak
After Ryder's liver biopsy clarified that he didn't have Biliary Atresia, I went through a stage of resentment. Don't get me wrong, I was beyond grateful that he wouldn't need a liver transplant, but I began to get frustrated with the hospital. I didn't have much confidence that we would get our answer with the genetics test because initially, his liver specialist requested the test for "Alagille Syndrome". Both his dad and I did some research and looked more into this genetic disorder, and the symptoms simply did not match with our son. I thought this genetics test would end up being a waste of time. About a month after his test, I received a call from his liver specialist. The results were in and as I suspected he didn't have Alagille Syndrome. What his specialist did seem concerned about was something called a "Pex1 Gene." It's a shortened term for Peroxisomes, which is an important organelle found in all eukaryotic cells. They are involved in the catabolism of very long chain fatty acids, branched chain fatty acids. This Pex1 gene is basically an important part of all major organ systems to function properly. What this test showed was that Ryder had an elevated amount of "Long chain fatty acids" which meant there was a mutation in his Pex1 Gene. His specialist said not to worry just yet, they were going to send his results to a geneticist to see if there was any concern. He said, "There are people walking around every day with highly elevated long chain fatty acids that function normally and don't know." The phone call ended with me being a bit confused but I wasn't too worried being that his specialist wasn't worried just yet.
By Kayleigh Sayer7 years ago in Families
Childhood Bullying
I remember those lonely, hard school days. Nobody would have believed how sad I really was because I always tried to fake a smile and pretend that everything was alright. I would dedicate myself to my schoolwork, even though I struggled, talk to other children, and try to engage in all aspects of school life.
By Carol Ann Townend7 years ago in Families
The Next 4 Months
The Best Day of My Life My pregnancy had been the longest and most difficult phase of my life but as soon as induction day arrived, it was a blur. I remember seeing Ryder's face for the first time and the world had stopped. It was almost surreal. This is the beautiful little boy I had cared for in my stomach for 9 months and now he's finally here. It was a lot to take in but it was also such a beautiful moment. For the first time, I felt unconditional love. Ryder was the most precious and sacred form of life. My hopes and dreams were now in physical form and in the palm of my hand. I couldn't help but stare in complete awe. Although he was completely perfect to me, the nurses quickly became concerned with the coloring of his skin. They determined him to be "jaundiced" and within a matter of minutes he was taken from me and set under "therapeutic blue lights." As a new mother, this broke my heart, but little did I know this was nothing compared to what we had ahead of us. Afterwards, I was granted the time back and spent most of the night with skin to skin contact to see if it helped calm down the jaundice. The morning after Ryder's birth, a technician came in to perform his newborn hearing screening. During the test I was chit chatting it up with my mom with absolutely no concern regarding his hearing. I mean what mom is initially worried about their son failing his hearing screening? The test finally finished and the technician told me he had failed his screening in both ears. My mom and I completely stopped our conversation in shock. I thought I had heard her incorrectly. I started to cry a bit. No mom wants to hear that their son might have a disadvantage ahead of them. The technician quickly reassured me it was normal for infants to fail the first time and it was probably just fluid in his ears. She said she would come back tomorrow and check again. This helped me relax a bit. It must be the fluid... no one on either side of our family has any hearing issues. There wasn't anything to be concerned about. The next day she came back and he failed in both ears once again. I had a pit in my stomach. The technician still assured me his hearing could still be okay and to come back in a few weeks to try again in case its taking the fluid awhile to drain out. I remained hopeful and tried to put the situation in the back of my mind. I mean we were still concerned with him being jaundiced any way. The therapeutic lights seemed to help his bilirubin levels and we were released on time. We went home with our little boy and things were looking up. Everything was going to be okay.
By Kayleigh Sayer7 years ago in Families
1 in 150,000. Top Story - August 2018.
“1 in 150,000 chance,” is what the doctor told us when describing the rarity of my son's new diagnosis, Zellweger spectrum disorder. All we knew was that this disorder was caused by mutated genes, and has a very poor prognosis. Our world was shattered. Our hope was shattered. And we had a long, broken down road ahead of us. This is my blog as a mother to cope and express my true feelings.
By Kayleigh Sayer7 years ago in Families
