Our son Robert David has been hearing since the hour he was born about all the things that are “wrong” with him: as a newborn, he had the wrong body temperature, the wrong blood sugar level, the wrong amount of bilirubin in his body, the wrong amount of red blood cells in his blood, and the wrong hearing. As he grew, he learned that he was behind in sitting, crawling, transitioning, clapping, standing, cruising, talking, and walking.
What we know about Bert is that he excels in areas that are not measured at doctors’ offices or on growth charts. Bert is funny, silly, kind, friendly, loving, and personable. He can signal a touchdown, fake sneeze, blow a kiss, and point out his Pap Pap in a picture. Bert loves to dance, look out an open window, and play outside.
Bert was recently diagnosed with spastic diplegia, which is a common form of Cerebral Palsy. CP is a physical disability that affects movement. This means that he has increased muscle tone in his legs, making his leg muscles stiff. Consequently, his movements may appear stiff or awkward. Cerebral Palsy is caused by a brain injury. As Bert’s physical therapist has said, his legs contain normal muscles that are receiving an abnormal message. Some children with CP have accompanying issues such as seizures, learning differences, and speech and language difficulties. We don’t yet know if Bert will experience any of those things. In most cases, CP is caused by a brain injury that occurs during pregnancy. We do not know what caused Bert’s CP, and it is likely we will never know. A wonderful thing is that CP is not degenerative, which means although his symptoms might manifest differently in the future, his brain cannot get worse. Another positive thing is that Bert’s neurologist has said that Bert is “bright and happy” and that he is “doing great.”
Right now, Bert has no idea that he is different. All he knows is that he has “dinosaur shoes” (one foot in an SMO and one in an AFO) that will make him “strong like a dinosaur.” He knows that he and his best friend Asha both have stiff leg muscles and a hard time walking. He knows that he and his best friend Jane Austen move through the world in exactly the same way: with four limbs on the ground. (Although Bert is slowly learning to walk on his two legs!)
While we don’t know what Cerebral Palsy means for Bert — every child who has CP presents in a different way, and it’s impossible for doctors to predict what life will be like for Bert 5, 10, 15 years from now — we know what it DOESN’T mean. It doesn’t mean that he will never go to Catholic school, play football, get married, or run in the backyard with his dogs.
As Bert’s family and friends, here is what we need from you:
- Please do not speak about Bert’s future any differently. If you have always talked about Bert playing football for the Mountaineers, going skiing, or being an astronaut, please keep saying those things to him and about him. It’s not fair to limit the dreams of a child, especially one who is not yet two. There are lots of athletes, actors, and artists who have CP.
- Please do not treat Bert any differently than you would if he didn’t have CP. Bert does not need extra toys or gifts, and he needs to learn manners and be lovingly disciplined. Treating him differently is not fair to him, to us, or, especially, to his not-yet-born baby brother.
- If you have children or know children around Bert’s age, please start talking to them about children who aren’t the same as they are (if you haven’t already). Bert might not walk or run quite the same as his peers, and it would be great if he were surrounded by friends who didn’t care that he was different. There are a lot of great books for this — we’re still discovering them! — but one we really like is called Giraffes Can’t Dance by Giles Andreae, which is about a giraffe who walks and dances differently than the other animals. We also like a book sent to Bert by his aunts Erin and Emma that is called The World Needs Who You Were Made to Be by Joanna Gaines.
- Don’t read everything on the internet. Many websites about CP are run by law firms that want to help parents sue their birth hospitals or doctors. If you want more information about Bert’s diagnosis, one good website is the Cerebral Palsy Foundation.
Please pray for Bert. Of course, we’d love a healing miracle (we’re asking for the intercession of Blessed Fulton Sheen), but more importantly we just want Bert to have the best care and the best life. And pray for us, too. Not only do we need prayers to be the best parents we can be for Bert, but also, as you might imagine, it is a little bit scary to think of going back to the hospital to have another baby boy in a few short weeks.
Thank you for being there for us, for asking about Bert, and for praying for us. Please don’t ever worry about saying the “right” thing — there really is no right thing. We just need you to truly listen and to care. We don’t need toxic positivity (“Everything will be okay! Don’t worry!”) or comparison statements (“You’re lucky it’s not worse!”). If you are a loved one who has a child or is expecting a child or is planning for a child, please don’t hide your child’s milestones from us. Your child sitting, walking, or talking doesn’t take anything from Bert, and we will celebrate your child’s accomplishments with you.
We are blessed in so many ways: among many other things, we have wonderful family and friends, we have the knowledge and desire to care for Bert, we have the resources and support to help provide Bert with what he needs, we have wonderful doctors and therapists, Bert has a mother who is a teacher and knows other educators, and we have a close family member (Emma) who has a master’s degree in recreational therapy and knows exactly how to help Bert enjoy regular activities.
Our hope is that Bert’s life will be a testimony to — and a reminder of — the One who made lame men walk.
We really appreciate all of you. Feel free to ask us any questions that you have.
Love,
Joe and Anna
The Lord gives and the Lord takes away; blessed be the name of the Lord.
- Job 1:21
I prayed for this child, and the Lord has given me what I asked of Him.
Now I, in turn, give him to the Lord. For his whole life he will be given over to the Lord.
- 1 Samuel 1:27-28
