A family impacted by CRPS learns to nurture hope
Madi was eight years old when she got hurt playing softball. It happened suddenly. Her mom, Jessica, was watching from the stands as Madi crossed first base and fell to the ground. Normally, she would bounce back up, hobble around or cry if injured. Instead, she became expressionless and turned white as a ghost. She didn’t move at all. Then tears started to form.
Madi’s dad, Bryan (who coached her team) ran onto the field. Jessica knew something was horribly wrong when Bryan picked their daughter up and carried her off the field.
Bryan and Jessica took immediate action. Madi saw a pediatric orthopedist the next day, who believed she had a fractured growth plate. Madi was placed in a cast. Yet when the cast was removed, her pain worsened. During the next five months, Madi had five casts and two boots. She wasn’t getting any better.
Something was seriously wrong
Knowing their daughter had a high threshold for pain—had never complained or cried in the past when dealing with an injury (she was the one who would plead to keep playing softball despite being hurt)—Jessica and Bryan felt something else was happening. Again, they took swift action to seek out a second opinion.
Five minutes into the appointment, the new pediatric orthopedist said, “I am pretty sure your daughter has a disease called complex regional pain syndrome, or CRPS.” Bryan, Jessica and Madi sat motionless. Jessica’s heart sank; having been diagnosed years earlier with the same disease, she knew it was true. Madi did not want to walk anymore, overcompensated by using her other leg, was miserable all the time and had lost her vibrant complexion.
The specialist immediately removed Madi’s boot; she could no longer immobilize the limb. She started physical therapy, went to a chiropractor and began active release technique (ART). It was through her ART practitioner that Madi began to obtain relief.
A whirlwind of emotions
As parents, Jessica and Bryan have felt every emotion: anger, confusion, sadness, nervousness, grief, fear and loss. The loss was deep, as they had to find a way to process the fact that the life they dreamed and envisioned for Madi had been derailed.
They now had to acknowledge her life with pain and new challenges. While it took time to pull themselves out of the despair and heartache, Jessica and Bryan soon moved forward with determination and hope. “Yet just as you think you are handling everything fine, then something happens,” says Jessica, “that brings you right back to grief. The cycle never ends.”
Like any parent with a child with special needs, the Begleys live in a constant state of fear. Nothing is easy anymore. Even signing a simple field trip form requires thought and planning. Should one parent attend? What will the class be doing? Could it be dangerous to Madi’s health? Everything creates worry.
“Although I know every family has their own problems, sometimes I am envious when I see families with healthy children. I wonder what that would be like, and if their lives are easier,” says Bryan. “When your child faces issues, you can never unplug or act like it is not happening. The meaning of normalcy changes; each day brings something different which is hard. It breaks my heart because I didn’t choose this for my child. No parent would.”
Advice for other parents
Thankfully, Jessica and Bryan have been embraced with support and love. Their wonderful families completely understood from the beginning, and offered to help in any way. Friends and church members also rallied, giving them encouragement.
The Begleys have met incredible people through Madi’s journey. They found a new community through support groups and organizations like the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) and U.S. Pain Foundation. It is from these sources that Jessica and Bryan have gained strength, counsel, information and hope.
Jessica and Bryan know how overwhelming it can be to navigate the medical system. They also understand the worry and heartbreak that comes when caring for a child with pain. They share these insights, from one parent to another, in hopes of helping:
- Hold onto hope – You have to hold on to something, and hope forces you to keep moving forward.
- Get involved – Everyone needs a network, and connecting with others who “get it” is comforting. “It is so nice to know that if I’m having a rough day, I can call or text another mom who understands it. They know they don’t need to say anything, but simply listen,” says Jessica.
- Stay Informed – As a parent, you must be educated. Continue to seek information that will help your child. Ask questions. When something doesn’t seem right, speak up. Get a second or third opinion.
- It is okay to grieve – It is important to give yourself permission to feel. You need to be angry or mad, cry and scream. It is only by acknowledging these emotions that you can move forward in a positive manner.
- Never let the diagnosis define who your child is – “We don’t view Madi as her pain. Pain is a by-product. Madi will define who she is on her own,” says Jessica.
Coping is a work in process
For Jessica and Bryan, coping is a work in progress (as is taking care of themselves). There are ebbs and flows, good times and rough times. Sometimes they go into panic mode, only doing what absolutely has to be done; other times they divide and conquer. Then there are the moments when life falls into a “new normal” routine.
“Our oldest daughter, Ashton, grew up faster than we wanted,” says Jessica. “But so has Madi. But we believe this made them both stronger.”
This experience has taught them all to appreciate the littlest of things. “We are extremely grateful when Madi can go for a whole month of school without missing a day,” says Bryan. For Jessica, when the whole family is able to sit down for family dinners together, she feels blessed: “I cherish those dinners when Bryan, the girls and I can talk and come together as a family. That is what matters in life.”
Bryan reminds Madi to always do her best. If the best she can do on the worst pain day is getting dressed, then that’s an accomplishment. Not only is he proud of her, but he also wants her to be proud of herself.
A personal connection to CRPS
For Jessica, having the personal connection of living with (and overcoming) CRPS makes her understand Madi’s challenges at a different level. It was the hardest thing she ever went through, and Jessica did it at 40; for her little girl to handle the same disease with such grace at eight makes Madi her inspiration.
She tells her daughter she never has to feel alone. “During the worst of times, I tell her to hold my hand and we will get through this together. I made her promise me she would never give up. She is so strong.”
One of the most poignant and heartbreaking conversations Madi had with her parents was when she shared with them her initial thought when the pediatric orthopedic expressed her concern that it was CRPS. At almost nine, Madi stated, “I won’t give up. I won’t let you worry that you will lose me like I thought I was going to lose my mom.”
Today, Madi is doing better. A recent podiatrist visit revealed that one of her legs is considerably shorter than the other. She also has two different feet, one flat and the other with an extremely high arch. To address this, Madi is wearing lifts full-time as she waits for special orthotics and shoes to be made.
She is attending physical therapy to help her learn to walk and run properly. With just the slightest improvement with her gait, Madi is noticing changes in pain. This is just one more sign to her parents and her that Madi’s tomorrow may become a little easier.
Jessica and Bryan are in awe of their daughter’s determination and strength. For Madi, pain is part of her life but she refuses to let it dictate how she will live. No matter what, if she can do it, she does it—whether that’s going on a family hike (if need be, Bryan can carry her home) or playing softball (if she hits the ball far enough she could hop to first base).
Madi proves she each day that she is a warrior. It is this can-do attitude that motivates her parents to do the same.
“What keeps us going is faith, hope and love. You have to have faith in something, hope in tomorrow, and love to sustain you,” says Jessica.