Some things can be measured: flour for cookies, a yard of material, an evaluation at work, and the number of times a heart beats, but what about pain?Â When your child is in the hospital and is in pain the clinicians will often ask “What number is your pain?” or “Which face is your pain?” as they refer to the Wong-Baker FACES™ pain scale.Â Seeing your child in pain leave you feeling helpless.Â You think you have endured your own pain at some time in your life but watching your young child scream in pain without relief from medications is frightening.
When your child is enduring pain due to their bleeding disorder you quickly learn that getting the pain under control is difficult.Â It’s not always as easy as “infusing more factor more often.”Â Every person is different and their needs change.Â Intravenous (IV) pain medications, patches, hypnotherapy, ice….there are so many ways to manage pain.Â But when you get to the point that your child has maxed out their IV pain medications via a Patient Controlled Analgesia pump (PCA), it’s then when you know what it is like to spend the nights watching your child sleep with your eyes glued to the monitor displaying the number of respirations.Â And when the alarm goes off because the number dips, your heart jumps into your throat.Â Sometimes it stays there for hours on end.
One of the best methods of pain relief for my son came late one evening at the hospital.Â Caeleb had pushed his button on the pump several times and had already received his maximum dose of morphine for the hour.Â We had ice on his knee, it was elevated and there wasn’t anything else we could do medically.Â I stood up and started singing and dancing to his favorite song, “Jingle Bell Rock.”Â He looked at me like I had lost my mind, (it was October), but he paused and joined in. For a moment he grinned and giggled through the pain.Â You never know what will work but when the nurse came in to check on him, she was laughing along with us.Â It was a great memory made in an otherwise yucky situation.
Managing pain can be frightening.Â Often times it is a “let’s try this and see” kind of situation.Â And as a mom, you have to be comfortable with the plan.Â Despite the experience I have with my son and managing his pain with medications, whenever he has a bleed I still have a great deal of anxiety surrounding the issue of pain.Â When you are in the hospital you have a safety net of medical personnel, but when you are at home administering heavy duty pain medications it can be nerve wracking.
A big reality regarding pain management is that the clinicians do not always have an answer.Â Sometimes the “try and see” method is the only method available. And while you are “trying and seeing” the person suffering is your child.Â As moms, we have to come in and advocate for our children.Â We know them better than anyone else and speaking up when something does not feel right is our duty.
The truth is this: our children are nothing less than warriors.Â They are battling a bleeding disorder.Â They come out fighting the bleed with factor, ice, rest. They fight to keep up physically with their friends that do not have a bleeding disorder.Â And they fight to stay on the less painful side of a bleed….before it gets out of hand.
Here is another truth to all the mom’s out there who have a child with a bleeding disorder: Â Our warriors are warriors because they learn from their moms. You are a Mama Warrior and don’t ever forget it!Â How many people can be by the side of their child when they are screaming in pain and simply hold them tight when you want nothing more than to break down crying?
We supply video games and Legos, puzzles and books, make up stories and crawl into bed with our child (while half of our bodies are hanging off the bed) to let our children know they are loved and not alone.Â Sometimes you may want to run and scream and hide and even get physically sick, but there is no time.Â Only Mama Warriors understand.
Pain is real.Â It is something that will be part of your child’s life.Â But don’t forget how important it is to not live in fear.Â Enjoy the days your child is bleed free.Â Drink in the joy of being a mom and take time to smell the back of their neck.Â Life is too short to miss out on the moments that most everyone else takes for granted.Â Don’t let the ache of pain dominate your life — take pleasure in all the quiet moments in the midst of your warrior battles.
Cazandra lives with her husband, Joe, and sons, Julian and Caeleb, in New Mexico.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers