Faith's Mom's Blog

What About the Boy? is written by Stephen Gallup, the father who made a pledge to his disabled son to help him find wellness no matter what it took. Joseph's parents were convinced that something was wrong him. He spent much of his time crying and while lying on the floor he would shake his head from side to side. Doctors and specialists told them that Joseph had a brain injury but that nothing could be done for him.  Believing that it was Joseph's birthright to be well, Joseph's parents took matters into their own hands, rising to the challenge of enabling Joseph to live a life of wholeness. For my complete review of What About the Boy click here . Read Stephen Gallup's guest post on my blog, Who Needs Sympathy?

I recently read a shocking article that the country of Denmark is well on it's way to making their country Down Syndrome-free. No, it's not with miraculous medical treatment, it's through aborting babies who are tested positive for the condition. Niels Uldbjerg, a gynaecological-obstetrician and researcher in medical ethics says the number of newborns with Down Syndrome approaching zero is a "fantastic achievement." My question is where does this stop? Are they going to start aborting babies who have congenital heart defects? Spina Bifida? Cleft Palates?This eugenics way of thinking is sickening and disheartening which is I why I wanted to post something on the complete opposite end of the spectrum. Following is a letter that Sarah Palin wrote to her family and friends a few days before her son, Trig was going to be born with Down Syndrome. Sarah Palin imagined the letter to be from God. To the Sisters, Brother, Grandparents, Aunts, Uncles, Cousins, and Frien

By Lori Borgman - written May 12, 2002 recently posted on www.amazingamelia.blogspot.com My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie. Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will  roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that can see, hear, run, jump and

Guest Post by Stephen Gallup Last week, a columnist for the local newspaper interviewed me in connection with a memoir I wrote that’s being published this year. It was a comfortable, low-key discussion in which he asked about the basic facts regarding my disabled son Joseph and what I’ve learned that might be of value to other families. It was the sort of dialog that required no special preparation in advance. I just sat down with him and talked about the subject closest to my heart. But looking back on it now, one thing bothers me. In concluding the interview, the reporter expressed heartfelt sympathy for everything I’ve endured. He was being more than polite. I mean, he laid the compassion on with a spatula. Startled, and already thinking ahead to what I had to do next that day, I just thanked him and said goodbye. But now that final note troubles me. I don’t want sympathy! First of all, from the point of view of a new author hoping to promote his book, sympathy

It's been a while since I've done "Tuesday Tidbits" so today with our wonderful winter weather, I thought it would be the perfect time to put together a brief update. (I'm not including a photo of our weather because it is just too dang depressing.) I mentioned in a previous post that Faith had gone to the dentist. Well in his words "she has a lot going on in there."  Her two top teeth are trying to come in along with her upper molars. She also has four other teeth that are slightly loose. No wonder she's been a bit cranky lately. According to Dr. Bryce, she will experience fevers along with a stuffed up nose and extra mucous and drooling. He said to give her ibuprofen to help keep the swelling down and ease the discomfort. I find this especially interesting because when I ask the same questions about the effects of Faith's teeth to her pediatrician, he always says her teeth have nothing to do with these symptoms. I have yet to hear of a pe

I was taken by surprise when I pushed Faith into the dentist office the other afternoon. The waiting room was packed with nowhere to sit. As I looked around the room, I saw that those waiting to be seen had some sort of disability and were all accompanied by a caretaker. I noticed the familiar face of an older girl with cerebral palsy whom I had seen at Medcenter once or twice. An attractive lady in business attire sat next to a man who waited in silence holding a little tiny beach ball in his hands. There was another older man with Down Syndrome. The only way he could talk was by pressing buttons on a little machine that hung around his neck. A chair happened to open up so I took it and pulled Faith as close to me as I could. I took off her coat and readjusted the straps on her harness. She told me she wanted to go home. I explained to her first we had to see the dentist. A loud, abrupt noise from one of the people in the waiting room startled her. It seemed we would be waiting fo

The Benefits of Early Intervention Programs Written by Eli S., who is working towards becoming a phlebotomist through online classes . Imagine finding out that your beautiful new baby had a developmental problem or a congenital disease. Would you know where to turn for help? Would you wonder how you would find the money to pay for specialized care for your child? It’s a scary thought, but for some parents it’s an everyday fact of life. Luckily, there is at least some cost-free help for infants with disabilities, in the form of Early Intervention programs. Early Intervention (EI) programs are federal and state funded programs available to all infants and toddlers with disabilities. The programs came about under the 1986 Individuals with Disabilities Education Act, which provided federal funding to states who established EI programs under a certain set of guidelines. The programs are meant to help progress the disabled child’s development, aid their independence, minimize the need for

Adaptive Equipment for Children with Cerebral Palsy Faith in her stander, a common piece of adaptive equipment for kids with cp

Family Retreats - A Ministry for Families Affected by Disability

The Largest Fundraiser of Its Kind

I admit I have some mixed feelings about school programs - like the kind of programs where children invite their parents and other family members to watch them sing and dance and do other activities. Don't get me wrong, I think it's great for kids to be involved - I loved having programs when I was in school. It always made me feel sort of special that my parents would come and watch us sing and perform, especially since we had put so much effort and practice into it. It's a little different with Faith though. She'll come home from school singing the songs she is learning and talks excitedly about all she is doing at school right up until it is time for the actual program to take place. Then she doesn't want to go. But we go, hoping she'll be okay. Last night was one of these events. The kindergartners were all putting on a "Rootin' Tootin' Hoot 'n Nanny event" that was going to be full of surprises for the parents and kids as well. And

I love taking Faith to school and seeing all of the kids coming in and out the doors. I laugh to myself when kids come flying in while the final bell is ringing and it's usually the same kids everytime! I watch the girls walk arm in arm whispering their secrets to each other and the boys being told to walk and not run. There is just something refreshing about kids being kids, laughing, talking and hanging out with each other. But there is also something I see that makes me sad. There are some kids with disabilities, some in wheelchairs, who don't seem to have any friends. I see a little boy sitting at the end of the table at lunch quietly keeping to himself. I never see him with a friend. There are also other kids, mostly boys I notice, who may have more difficulty walking who don't seem to have any friends either. And of course it makes me wonder what it will be like for Faith when she gets older. Right now, the kids in her classroom adore her. Some of them stop and sa

Last week and now again this week we are experiencing some near-sleepless nights. Last week, Faith was only sleeping for about an hour at a time before waking up, tossing and turning on the verge of crying. Each time this happened I would get up with her and hold her until she went back to sleep. Then an hour later we would repeat the process. This was nothing new for her. It had gone on before and each time it happened I wondered what could be going on. Rob and I figured she was going through a growth spurt and having pains in her legs like I used to have. I decided this time though, that I would take her in to see her pediatrician. I'm so glad I did. He attributed her restlessness to muscle spasms which is common for those with high muscle tone (tight muscles). It made sense too because of the way she was acting. It's as if she just couldn't get comfortable. When you or I sleep we can actually relax our muscles, but Faith can't because her brain is not capable of se

Adaptive Toys for Special Needs Children

In the waiting room, at pediatric therapy, I am known as Faith's mom. Just as others are known as Ashley's grandma, Luke's grandma, Chloe's mom, Abby's caretaker. At first, we were just a familiar face to one another. But as our children and grandchildren came for therapy more and more, we began to talk. We compared stories. We asked each other questions. Our waiting time has now become social hour. We have become our own little community - supporting one another, offering prayers and talking to those who know exactly what we go through. It's not just the parents, grandparents and caretakers who share a special connection with one another. It's also the three receptionists who sit behind the desks. Some children, like Faith, have been going to therapy for years. They know our backgrounds, they know when we aren't feeling well and most of all they know and understand our children. They laugh at the children's stories and they cry too when one of the