Faith's Mom's Blog

This past week marked a huge milestone in Faith's life - she has been at her day program for 4 years! I well remember how excited I felt when I found out that in order to qualify for the program, all she needed was to be 18 and have a high school diploma.  I know that is not the case in some states. And in many cases, parents choose to have their special needs child in school until they are 21 and then after that they can attend a day program. For Faith though, since I homeschooled her, we were both ready for her to move on to her adult life when she turned 18!  Faith at the Science Center with one of her day program staff  After a few meetings with her case manager and day program staff, she was ready for her first day. But was I? She was excited when I dropped her off, but as I drove away from the building, I began to cry. Would she really be okay here? Would staff know what to do if she looked uncomfortable or seemed like she was in pain? Faith is verbal, but she canno...

 Lately, I've been feeling very fortune to live in a community that provides so many activities for those with special needs and disabilities. Last year on her 21st birthday, Faith began taking adaptive dance classes at Northern Plains Dance (NPD). They offer five sessions throughout the year. We opted out of the session offered in January and February, mainly just to avoid being out in the brutal weather winter more than we have to be.  Faith working on some dance skills with ribbons.  During the February/March sessions, her class began practicing for their "big performance," which would take place during the student showcase. All of the dancers at NPD participated in this showcase. Her class would be performing to "Can't Stop the Feeling" by Justin Timberlake.  Faith was excited not only because of the song, but because both of her dance partners would be on stage dancing with her. During the sessions, her partners take turns with her from week to week, ...

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...

Faith loves going to plays, musicals, ballet performances, and other events in which her friends perform. When she was younger, I thought attending these things would be too overwhelming for her as she has a strong startle reflex. Usually, it's loud or sudden noises that trigger her startle response. However, when the noise is constant, or she knows what to expect, she actually does very well. That's why when I found out that Dreams in Motion was doing wheelchair dance, I figured she would want to do it. When I asked, she enthusiastically said, "YES!"  She was so excited to go to her first practice. She told everyone she saw that she was going to be in a dance performance! During practice, we found out the theme was Encanto (which we have never seen). They were going to be dancing to a medley of songs from the movie. There were about a dozen participants, some with manual wheelchairs and others with powerchairs.  During practice, each of them was paired with a volun...

Finally, on November 4th, the day the elevator in our building was fixed, I was able to take Faith downstairs so she could check out her new van! It happened to be a beautiful day, close to 80 degrees, which is rare for North Dakota in November. We had respite care that day, so I had her record me getting Faith loaded up for the first time.   Faith is all smiles about her new van! Faith is ready to roll! After loading her up, the three of us went for a fun drive including a trip through McDonald's so Faith could get a chocolate chip cookie. Faith was having so much fun as we drove around.  She kept randomly shouting out things like, "Happy Birthday!" and "Merry Christmas!" (I am looking forward to driving around and looking at Christmas lights with her this year!) I guess she really does think her van is the best gift ever!  Faith inside the van. Earlier this week, we used the van to take her to an appointment with the general surgeon. She wanted to check Faith...

Twelve years ago in late April, we were given the dreaded news that our daughter had spastic quadriplegia - the most debilitating form of cerebral palsy.  I will never forget looking down at my six-month old baby, fast asleep in my arms, while her doctor talked about the possibility of her being in a wheelchair as she became older.  At the time, it was not like me to show such public displays of emotion but on that day I couldn't hold back the tears. In the days that followed I had so many questions.  Of all the questions though, there was one that I asked more often than others. "Can God heal my daughter?" I came to believe that He could, even though I knew it would take a miracle.  Faith shortly after we brought her home from the NICU where she had a 73-day stay By definition a miracle is, " an unusual or wonderful event that is believed to be caused by the power of God." When a true miracle occurs, there is usually no scientific explanation for ...

This page contains affiliate links and Faith's Mom may earn a commission if you use them. As an Amazon Associate, Faith's Mom earns from qualifying purchases.  Learn more.   We've been reading books to Faith ever since she was a baby. When she was little, she had to wear an eye patch for 30 minutes a day in the hopes it would help strengthen her eye muscles so they would no longer turn inward.  Reading a book to her while she was wearing the patch was a great way to keep her distracted from having to wear it. Even after she no longer had to wear the patch, she continued to love being read to. Reading to Faith when she was little As Faith got older, we had hopes she would learn to read on her own. She is ten and that still hasn't happened. We continue to pray and try to find ways to help her be able to read. Her music therapist  is trying to do all she can to help us with this endeavor. We know her vision is fine, but we think her eye muscles might not be working...

November 17 marks World Prematurity Day . One might wonder why awareness needs to be raised about premature births. Well, I can tell you firsthand that it is a really good thing when more people are aware of the risks and complications, not to mention the emotional toll, of having a baby born too early. Having a baby born prematurely is not something most expectant parents think about until it happens to them. Most moms-to-be who first learn they are pregnant automatically think they have seven or eight months to prepare for one of the biggest days of their life. Expectant parents usually have one response when asked if they are hoping for a boy or a girl - "As long as the baby's healthy." But sadly, sometimes that's not always the case - especially if the baby is born too early. I will never forget the book I was reading shortly after finding out I was pregnant with Faith - "What to Expect When You're Expecting." It was a great resource that o...