Cerebral Palsy Awareness Month: Reflecting On Our Journey So Far

-
Image
Did you know there are 1 million people in the United States who have cerebral palsy? I guess that means Faith truly is one in a million!  Faith was diagnosed with cerebral palsy when she was six months old. Prior to that, she had been given the diagnosis of Periventricular Leukomalacia  (PVL). During her premature birth, there was a lack of oxygen to her brain, which resulted in damage to the white matter, or inner part of her brain.  I will never forget receiving that news. Faith's Dad and I were told that nobody knew what the long-term effects of PVL would look like for her. All I could do was stare at my tiny daughter lying in her isolette, hooked up to all kinds of tubes and lines, and choose to believe she would be okay.  Faith in the NICU a few days after she was born. After over 70 days in the NICU, we finally took her home to Watford City. There, she would receive regular visits from an Early Intervention team who would assess her and ensure that she met al...
1 comment

Making a SPLASH in School

-
Second graders at Centennial Elementary get to enjoy a program called SPLASH that gives them a chance to go swimming once a week in September. Instructors at the YMCA teach the kids different swimming strokes, water safety and survival skills. The kids are in the water for about one hour.

Since Faith loves swimming, I thought she would be very excited. Unfortunately, though she seemed more nervous about it than anything. We skipped out on the first week but made it this week and she had a blast! It was hard to tell who was having more fun - Faith or her instructional aide that was with her in the pool.

Faith kicking her feet up in the water

Faith tries to touch the bottom

Faith tries to do a back float

Comments

Post a Comment

Most Popular Posts

Guest Post: Who Needs Sympathy?

-
Image
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...
Read more

Faith Turns 21!

-
Image
Faith's 21st birthday was on Friday the 25th and it ended up being an all-day celebration! She didn't sleep well the night before, so I was a little concerned she would run out of steam, but she just kept going! It ended up being a beautiful fall day, so I didn't even need to put a jacket on her, which is rare for the end of October.  Faith in her new birthday shirt!  This year, she was able to bring cupcakes to HIT. Last year, due to the dietary restrictions of her peers, she didn't bring any treats. This year, however, she is a new room, where they truly love their snacks! After I dropped her off, I raced around like a maniac getting her ballons, presents, and everything else ready for the surprise party we would be having at the end of the day.  Faith with some of her staff making a cupcake delivery.  When I picked her up from her day program, I informed her that some friends of mine that I worked with wanted to give her a special birthday treat. So, we made our w...
Read more

Our First-Ever Sister Weekend Getaway!

-
Image
Just recently I was able to go away for the weekend - for fun! For the first time in 18 years, I was able to travel to another city, stay overnight, and not have any doctor's appointments or procedures. And what made it even better was going with my sisters!  Faith was well-looked after by respite care. She even had a friend come over to visit and her grandparents, too! Of course, getting away did not come without a challenge or two.  The day before leaving, as I was cleaning the entire apartment and getting ready to pack, a staff member at Faith's day program told me her feeding pump was not working. I only had an hour before I had to pick her up so I cruised down to our DME provider and asked if I could get a loaner pump since hers was not working.  Unfortunately, they no longer carried the type of feeding pump she uses, so I needed to get a whole new system. This required me to learn how to use it and then make sure Faith's respite staff and her day program staff was g...
Read more

Our Review of Wheel of Fortune: The New Era

-
Image
Last year, when I heard the news that Pat Sajak was retiring from Wheel of Fortune , I knew I better prepare Faith. When season 41 began, I told her, "This is Pat's last season. Next year, there will be a new host."  Faith likes Vanna but loves Pat!  Faith and I have faithfully watched Wheel of Fortune every night since she was about 5 years old. It's how she learned that AEIOU were vowels. The show was also a great way to reinforce the rest of the alphabet. Counting was reinforced, too. When Vanna turned the letters, she counted how many T's, N's, or other letters there were.  She also learned some geography skills with the different trips they gave away. Upon winning a trip to Aruba, she would ask, "Where's that?" Sometimes I honestly didn't know and had to look it up. More often than not, the prize was somewhere in the Caribbean!  I have tried through the years to get her to watch other game shows, but she has only been interested in Wheel...
Read more