It's an infusion day. I have to get my act together quickly before my husband leaves the house. While other mothers with a child this age may be able to administer intravenous clotting factor to their boys with hemophilia, I cannot. Then again, most other mothers don't have a little boy with hemophilia who has experienced as much trauma as ours has at this point in the journey.
I prepare the infusion the same way I have a thousand times before and take a deep breath. A clean cloth surface is covered with syringes, alcohol swabs, gauze pads, a bandage, a 25 gauge butterfly needle, and his "favorite" tourniquet. I pray that I don't miss that vein on the first attempt or our whole day will be turned on its head.
"Okay, guys! I'm ready," I shout to my husband and son, signalling that it's time to commence this 5 minute procedure.
My husband sits down with our son in his lap. He's ready to administer "the death grip," as we've jokingly come to call it. Our son's emotions already beginning to rise, my husband puts his arms over our son's shoulders, holding the wrist of the arm we will attempt to access while he also puts the other hand under the elbow to keep our son from flexing it. He wraps each of his legs around a corresponding leg on our son to keep him from kicking and broncing like a wild horse at a rodeo. I count down... 3... 2... 1. "Mom, wait! I'm not ready yet." This is the first of several times our boy will cry out like this hoping to delay the inevitable. "Be anxious for nothing, buddy," I soothingly lilt in hopes of calming him.
We try again, but I miss the vein. He moved! Oh, God help us!
The crying begins and he pleads to take a break. I acquiesce, looking for my phone to call the school. He won't be coming in today. My husband looks frustrated. He has to get to work. We have to give this another try. Our son needs the clotting factor to keep him safe. Besides, if we just scrap the infusion and throw the factor away, we will be putting over $1,000 in the trash. The clock is ticking. We only have 3 hours after reconstituting it before the efficacy of this medication is shot.
We give it another try. My husband holds on for dear life as my son writhes, yelling and making himself stiff as a board. By God's grace I have managed to get the butterfly needle in our son's arm. The worst part is over. Now to calm him down and let him know it will all be okay. My husband strokes his hair and assures him, "It's okay, buddy. We're in. The worst is over. Now sit still because you don't want Mom to have to do this again."
After the extremely brief procedure is finished, a small bandage is on our son's arm, and my husband is finally out the door to work, I hold our son close for a bit. There are tears and questioning of this whole nightmare. He'll head to bed soon to recover from the emotional exhaustion inflicted by this whole situation. My day is shot. Nevertheless, I have to get my thoughts together because this isn't the only thing required of me today. I just want to take a nap like our boy.
This whole process will begin again in 48 hours. I hope it goes better next time.
This is what my life was like when I became friends with Jolene Philo 6 years ago. I went against all the rules I give my children for making "friends" on social media. We were both professionals using Twitter to promote our work when we connected. Eventually, we spoke by phone, met in person, networked, and have even presented together at a conference. As our friendship grew over these years, we exchanged the stories of our sons and dreamed of a day when a book about pediatric PTSD would finally be available. Now it is.
On October 1, publisher Familius, Inc released the first edition of Jolene's book, Does My Child Have PTSD?: What to Do When Your Child Is Hurting from the Inside Out. I am admittedly biased because Jolene is not only my friend, on Snappin' Ministries' board of directors, and a respected colleague, but she also shares some of our family's story in the pages of this book. Regardless, this book is far beyond what even I imagined it might be over the years we talked about it.
Within the pages of this long-awaited volume Jolene shares an amazing aerial view of this diagnosis in traumatized and medically-fragile kids. In fact, parents will find themselves nodding their heads over and over throughout its reading as they sense the validation they have been lacking until the release of this book. PTSD is examined from a historical perspective, looking at how diagnosis first began in soldiers. Ample reference is given to studies on childhood trauma and their causality. Symptoms through ages and stages are detailed. And reasons for misdiagnosis are also insightfully revealed.
There are several things that really impressed me about what Jolene has put to paper here. First off, the way she explains the chemistry of the brain and how all the various parts function, in a way that the average person can grasp, is no small feat! I think there are some high school psychology and biology teachers that could learn from her pages on this topic.
Secondly, there is no lopsided bias shown in discussing treatment. It is critical that people realize that there is no "one size fits all" solution to treatment of PTSD and childhood trauma. While some methods are empirically more successful in their outcomes than others, there are a variety of treatments that are available for this stubborn diagnosis. Jolene's son found great success with one method, while my son has made incredible progress with another. She puts all of the information out there, so readers can explore options on their own.
Finally, Jolene is vigilant to emphasize that PTSD is not something from which a child is ever "cured." I think of how my husband used to tell the story of Johnny Carson explaining that he always had butterflies in front of a crowd, despite years of doing The Tonight Show; He just learned how to teach them to fly in formation over time. It is much the same with PTSD, and this book is mindful of making certain the reader knows that.
Since we first came to be friends 6 years ago, my son has made great progress with his trauma. He now administers his own intravenous medication, but has times where he takes a few steps backwards. That is a far cry from where we were when his PTSD was at its worst. One thing that I shared with Jolene when she interviewed me for this book was that I hated how stubborn and persistent this difficult diagnosis can be. Nevertheless, a parent has to be more persistent than that rascal, trauma. (See p. 112 of the book.) I am grateful that my friend, Jolene, has brought this topic to the fore through this book. It validates the experience that so many of us parents have painfully army-crawled through with our kids and gives hope. In my humble opinion, Does My Child Have PTSD?: What to Do When Your Child Is Hurting from the Inside Out should be required reading for nearly every parent raising a complex or traumatized child.
PRAY: LORD, You told us to "be anxious for nothing." So often that is easier said than done. Thank You for giving us tools like Jolene's book to calm our fears and help us to stop being anxious about anxiety. We praise You that You are helping doctors get at the root of these traumas and find help for our kids. You love them more than we ever could.
~ Barb Dittrich
October 4 - 10, 2015 is Mental Illness Awareness Week, and World Mental Health Day is on October 10, 2015. "Dignity in mental health" is this year's theme.