Hand to Hold's Official Blog: Written by Parents for Parents

My Child Without Labels or Limits (Hoping Beyond Cerebral Palsy)

When I look at my son I see a happy, lively, extremely kind kid with a spirit that is sweet and miraculous. He is every bit the gift from God I prayed for.

smiling

I see his love for music, his keen sense of sound, and his ability to entertain himself just long enough for mommy to rejuvenate after I get home from work. I see the skeptic in him, how he analyzes all toys (and people) that are new, to ensure that they are worth his baby time and effort. I listen as he laughs hysterically at the most random of commercials, yet cries inconsolably at the first note of the Star Spangled Banner.

ridingI see the fun he will have in the future riding bikes and playing with his best friends DJ, Brandon and Chase. I see him throwing basketballs into hoops with his dad. I hear him having deep revealing conversations with his grandma. I envision him spending hours with science kits, and figuring out new ways to enjoy old things. I see him being this brilliant kid who will amaze the world with his determination, a determination he perfected as a child overcoming the hardest challenge of his life.

That darn Cerebral Palsy.

When doctors see him that is what they focus on. They have this chart that tells them what he should be doing by his adjusted age of 18 months. They have this pen they use to make checks next to the developmental skills he has mastered. Already, according to them, my child is not passing the standardized test. They make notes and increase therapy. Their degree in medicine is respected, but my degree in mommy must make its presence known. Even though their tone is optimistic, I still need to set them straight if they are going to play on team Jharid Jr. I value their notes and their checklist, but they must value my vision. My son has benefited equally from both.

I have no problem explaining to medical doctors how I have enough faith not to let a cerebral palsy diagnosis impact the way I dream for my child. Of course I listen to the doctors and ensure the therapy is maximized but after I leave their office, those two words have no power in my home. We don’t accept labels that sound horrible but truthfully describe a wide range of complications. And honestly, we don’t use labels that don’t feel right for our son.

Cerebral Palsy (CP) is a general term for a group of permanent, non-progressive movement disorders that cause physical disability in development, mainly in the areas of body movement. CP is caused by damage to the motor control centers of the developing brain and can occur during pregnancy, during childbirth, or after birth up to about age three.  Cerebral Palsy can present itself in various ways in children; some have severe CP and others have CP that is hardly detectable after a few years of intense therapy and work. The kind Jharid has was caused by grade three brain bleeds as a result of his premature birth. In the NICU, the doctors said that those brain bleeds could dramatically impact his way of life. They said a lot of things that we did not accept, including that he would not live. And did we not leave that hospital with a healthy, happy boy? Yes we did! We have been defying labels since breath one.

standing

Jharid is almost two and not walking or crawling or talking. True. But he is getting there. He has the desire to run a marathon (momma knows). He is holding himself up and rolling and doing things today that he could not do three months ago. We are a patient, praying family and he is a very willful child. He has preemie power, and that is the only label I feel comfortable allowing him to wear. It tells the story of his birth and of God’s grace. Any other label or limit imposed by the medical world we answer with a confident, “God’s got this”. Parents, we know our children best. Isn’t hope within our parental rights?

supermanParents you have the special power to focus on the healing and not the labels. Labels are put on and fall off. But faith never wavers. Choosing not to let them define your child doesn’t mean you aren’t accepting the present circumstances. It means that you see beyond them. Your child can do anything.  And if God positions in your spirit a certainty of triumph, trust it!

My son has Cerebral Palsy? Please. Here on Team Jharid, we are just taking our time and enjoying the ride.

How do you feel about labels for your child?

Kaleena Berryman About Kaleena Berryman

Kaleena Berryman (NJ) is mom to Jharid, born at 24 weeks, in April 2012. After five months in the NICU battling complications such as ROP, BPD, Grade 3 brain bleeds and NEC, Jharid came home to his mom and dad a healthy, happy, thriving boy. Even though “Mom” is her most treasured title, Kaleena is also a writer, poet, mentor, and Program Coordinator for the Abbott Leadership Institute at Rutgers Newark. She wants to help other preemie parents develop their advocacy voice. Kaleena has a B.S. in Communication from William Paterson University and a M.S. in Public Administration from Rutgers University. She is the founder of a preemie parent support blog. Connect with her on Facebook.

Comments

  1. Seeing this felt so awesome! I have not shared the CP diagnosis widely so this is a revealing moment for me. Thank you for the opportunity to share here!

    • Belinda Berryman says:

      Hi Kaleena, your article is so inspiring and beautiful. Thank you for sharing your feelings with us.

  2. Thank you. It needs to be said. The label or diagnosis doesn’t tell you much about a kid – or anyone else, for that matter. It’s only a small part of who they are. It’s only one of a million things I have to think about when I’m parenting my kiddos. I don’t get up every day thinking, “How can I make the CP better?” Or the GERD. Or in my son’s case, the autism. I get up thinking, “How can I make my kid’s day better?”

  3. alycia macarthur says:

    My son also has cp as a result of his premature birth, and a small hole in his heart known as PDA, or patent ductus arteriosis. It was a rough ride for him from day one, but my son takes it with a smile. He’s been in physical, occupational, and speech therapy since he was six, although cp was never mentioned or investigated till he was four… They never mentioned it even as a possibility. Thank you for sharing your families story of strength. It made me cry. Beautiful.

  4. alycia macarthur says:

    Six months, not years. Don’t know why it didn’t pick it up…

  5. Carol Tagoe says:

    Kaleena,

    You personifies the word PERSEVERANCE. Man says one thing, yet GOD says something else. I am team Jahrid he will do all those things and more. Because Jahrid have a mom is who never got defeated, wasn’t beaten down and continue to have hope.

    So I tell you to believe that you have received the things you ask for in prayer, and GOD will give them to you. (Mark:24)

  6. Kaleena, you utterly and completely rock! You are a Momma Warrior with a voice I envy and utterly respect! There were like 10 different lines throughout this post that left me covered in chills! “Their degree in medicine is respected, but my degree in mommy must make its presence known.” And this one – “Isn’t hope within our parental rights?” should be made into a bummer sticker!! Love you, girl!! XO

  7. Najla Fareed says:

    Dear Daughter… it is the journey that counts….

  8. Thank you moms for reading and relating. This is some journey, but I appreciate being a part of this community and all of your encouragement! Kasey, you sure know how to make a new preemie writer feel good! Thank you!

  9. I love your story my boy just turn 4 last week he was born @28 weeks 2lbs 5oz diagnosed with mild cp he started walking @2 1/2 God is great ??thank you for sharing your story ?

  10. i haven’t prayed since i lost my brother and mother over 16years ago how ever i will be praying for lil jahrid tonight! take it to son and he will take it to the father

  11. Mijiza Jefferson says:

    You are an inspiration to me and many other mommies of preemies. My son was a 27 weeker weighing 2lbs and half an ounce. We are dealing with sensory issues and oral fixation issues, however, like you, we will not let anyone speak negativity over our child’s life. Your article inspired me to keep hold of my faith and to not let anyone define him, but God! I thank you for your blog and Facebook page.

  12. Essie Williams says:

    That was so beautiful! Yes let’s get rid of labels! We are all beautifully and unmistakably created by God!

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