Living with Cerebral Palsy

Here at All Things Possible, we get a lot of requests from families who need wheelchair vans. While everyone has a different story, the majority of people who reach out have a child with cerebral palsy. Because this diagnosis is so common in our community, we wanted to shed some light on what life is like for someone with cerebral palsy and their family members.

What Is Cerebral Palsy?

Cerebral palsy is a motor disorder. In fact, it’s the most common motor disability in children. It is caused by abnormal brain development or damage that occurs to the brain while it’s still developing, and it affects an individual’s ability to control his or her muscles. There are a few different types of cerebral palsy, and the implications of each can vary a great deal. Some people may walk a little awkwardly but otherwise live a relatively normal life. Others with severe CP may not be able to walk, talk, or feed themselves, and they often need lifelong care.

We interviewed some of the families we’ve helped who have children with cerebral palsy. While we knew a lot about their stories and struggles to begin with, their experiences shed a lot of light on the difficulty of having a child with cerebral palsy.

Diagnosis

Most people receive a diagnosis of cerebral palsy right after birth, though some may not get an official diagnosis until a child is a few years old. Many children with CP have other health concerns, even early on. One mom shared that her son had hydrocephalus (excess fluid in the brain) and a tumor behind his eye at just six months old. Additionally, the prognosis at the time of a CP diagnosis is often very heavy and dark.

The moms we spoke with were told their children would likely die at an early age. They were told they would never walk or talk, that they might be blind, and they will be handicapped for as long as they live. These prognoses are not always correct, thankfully, but hearing those things about your child from an early age and then living to expect the worst can be terrifying and exhausting.

Physical Challenges

In addition to being the constant caretaker for a child with CP, physical challenges can be quite taxing on a parent. Lifting a child into and out of a wheelchair, car, bed, and so on is a lot for anyone, but particularly for smaller moms with larger children.

One mom we spoke with only weighs about 110 pounds and her son is 80 pounds, and she was putting him into and out of their van several times a day for many years. Additionally, many children with CP cannot move on their own accord, so parents must roll their children over multiple times during the night so they don’t have bedsores.

Thankfully, lifting children into vehicles is made easier when families receive a wheelchair van from All Things Possible. We are grateful to ease the physical burden of some local families through the generosity of our donors and hope to continue to offer more support in our community.

Emotional Struggles

The emotional toll of having a child with special needs is unimaginable. One mom shared that her doctor wanted to put her on antidepressants when she told him that she is sad most of the time because of her son’s diagnosis. She said it’s not that she’s depressed or hopeless, but she’s simply sad about the way her son has to live and the challenges that they both face due to his cerebral palsy.

In addition, parents of children with special needs often have to grieve the life they once envisioned for themselves and their children, and that grieving process is not linear or finite. It is a constant back and forth of being thankful for your child’s life and struggling with what you’re both missing out on.

Children with less severe CP understand their limitations and can see the differences between themselves and other children. This can be difficult to navigate as a parent and it is excruciating to watch your child struggle and be sad because of their own physical handicap.

Lifelong Care

Many people who are diagnosed with cerebral palsy will require lifelong care. While age expectancy can vary a great deal, this often means decades of constant care. Many of the families we serve are single-parent households. One of the moms we spoke to about CP shared that her biggest fear and concern is passing away before her son does. She is afraid that no one will be able or willing to take care of him if something were to happen to her.

That fear and these struggles are the everyday reality of many families in and near Charlotte. We long to help more people and ease some of the heavy burdens that these families live with day in and day out. Won’t you join us? You can volunteer your time or make a donation now so that All Things Possible can bless and serve more families in need of a reliable, safe wheelchair van.