Cerebral Palsy Awareness Month: Reflecting On Our Journey So Far

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 all of her milestones. As the weeks and months went by, it became quite clear that something was not right. 

Faith's grandmother from Canada had been visiting us during one of these visits. After watching Faith lie on the floor, unable to rollover, crawl, attempt to sit up, or make any other kind of purposeful movement, my mother-in-law asked the dreaded question, "Is it CP?" 

The early interventionist and the physical therapist were both quick to say they could not make that diagnosis. They urged us to set up an appointment with the doctor she had while in the NICU so that he could assess her. 

Faith just a couple of months old at our home in Watford City.

That appointment was on April 27th, 2004. This was the day we learned that Faith had spastic quadriplegia, the most severe kind of cerebral palsy. The part of her brain that was damaged was sending inhibitory signals to her muscles, which increased her tone. 

This increase in tone is also known as spasticity and was prevalent in all four of her limbs, making it very difficult for her fine and gross motor skills to develop correctly. The damaged parts of her brain also affected other areas, like digestion, communication, and cognition. 

Three months later, we moved from Watford City to Bismarck/Mandan so that all of Faith's special needs could be met. Our schedules became filled with physical and occupational therapy appointments, meetings with early interventionists, case managers, and durable medical providers, not to mention other specialists who would help us navigate the very challenging road of having a daughter with many special needs. 

Faith at physical therapy in her very first set of wheels.

Thankfully, cerebral palsy is not a progressive condition. This means that it doesn't get worse over time. However, as Faith grew, there were new challenges along the way. 

During her younger years, it was possible to carry both her and her chair up a flight of stairs and get her into and out of a vehicle. As she grew however, and her wheelchair had to be upgraded, this became impossible, which made it necessary to live in an accessible apartment and get an accessible vehicle. 

Because her condition affected digestion, she could not eat enough food to provide proper nutrition and as a result was diagnosed with failure to thrive. Thankfully, a feeding tube provided a way for her to get enough calories and gain some weight. 

It's hard to believe now, but at one time a speech pathologist informed us that because Faith still wasn't talking at the age of 3, she was most likely nonverbal. (About 25 percent of those with cerebral palsy are nonverbal). We were looking into getting a communication device to help her communicate with us, when all of the sudden she just started talking! (And she hasn't stopped since!) 

In 2009, Faith got a bigger (and heavier) chair, so we moved to a place with an elevator.

After another chair upgrade, we got our first accessible van.

There is probably so much more I could say about the challenges of having a daughter with cerebral palsy. She has had to overcome some very difficult things, one of which was having her left hip come out of its socket. It is quite devastating as this means she can no longer stand in a stander (which helps maintain bone density) or walk in a gait trainer like she once used to. 

After it had become displaced, it wasn't possible to put back in, as it would most likely just come out again. As long as Faith wasn't having any pain, it was recommended not do any kind of surgery. Thankfully, it doesn't seem to be a problem for her, but for me it is difficult to live with this reality.

With the cerebral palsy comes all kinds of difficult decisions. One of which was whether or not to do Botox injections to help relax the muscles. Another decision I have wrestled with over the years is whether or not Faith should get a baclofen pump. 

I eventually decided to go ahead with a procedure to have a test dose of baclofen injected into her spine. Things did not go well, and she ended up in the hospital for 5 days. As a result, she does not have a baclofen pump. She has received Botox, which helps decrease tone, but it is not a long-term solution. 

Something I've had to learn over the years is that even though doctors make certain recommendations, it doesn't mean I always have to do what they suggest. I have learned instead to advocate for Faith and try to do what I think is best for her. For example, even though pediatricians prescribe it all the time, I don't want to give her Miralax for constipation. Instead, I have found success with other more natural supplements (like a high-quality brand of magnesium and Vitamin C). 

Faith getting nutrients from her new blended diet. 

Her digestion issues were also the main reason I decided to start blending her food. One drawback of blending, however, was that it was hard to get enough iron into her diet. At one time she was on an iron supplement, but then I found Liquid Hope, which is a type of organic formula made with real food. It contained enough iron so that I was able to take her off the supplement she had been taking. Right now, I'm doing a combination of the Liquid Hope and food that I blend for her so that she can get a wider range of food and nutrients. 

Although there was a period of time Faith had taken a break from all her traditional therapies, we decided to go back in 2021 as she was really struggling with anxiety and emotion regulation. At this time, I had become a single parent and found it nearly impossible to deal with her daily meltdowns on my own. 

I asked other special needs parents for recommendations on where to take Faith to help her in this area and was told that Kids in Motion did free screenings. I began taking her there two days a week, and we have been going there ever since. The therapy she has received has been nothing short of amazing. She is currently doing aquatic therapy and learning to drive a power chair! 

We are also blessed in this community to have a wonderful day service program that Faith has been attending for the last 3 years. Although she only goes part-time, it has been so beneficial, and I have seen many areas of growth in her. 

Faith during a PT session. 

In 2014, I began homeschooling Faith and in 2022 she graduated from high school! 

As you can see, these past 21 years have been filled with challenges and lots of bumps in the road. However, if you have ever met Faith, you know that these challenges have not deterred her in any way. She is filled with joy and has so much love for people. 

I know there are many days she is not feeling the best and there are things she gets sad about, but she really tries to give it everything she has on a daily basis. For me, raising a daughter with cerebral palsy and making all of the decisions that go along with it has been quite a challenge, and I can't imagine doing it without help. 

Attending a sock hop at her day program.

Thanks to the Internet, there are many places that provide answers to questions that I have had over the years. In fact, it's how I learned about a blended diet for feeding tubes. I'm also a part of a local group on Facebook of parents in the area who are raising special needs kids. 

Besides connecting with others in similar boats, I am thankful for the love, support, encouragement, and understanding from others. Most of all, I am thankful to God for giving me the strength, guidance, and grace to be Faith's Mom. 

If you know someone with cerebral palsy, or a parent of a child with CP, this is a great month to reach out to them and offer some encouragement. Also, March 25th is Cerebral Palsy Awareness Day, so please wear green to show your love and support! 

Remember to wear green on March 25th!