My Son Learns Why It's Critical To Rely On Others

My adult son is 22 and living at home. He will be moving to a neighboring city next month and will go back to college in the fall. He was recently hired at a coffee shop and has been commuting the 90 miles one way about four days a week until he moves. It’s been a big commitment, but he is looking forward to the next phase in his life. I am excited for him.

Last week, he called me during his shift and told me he was having a bleed. It was a significant one in his arm. He had not told his employer about his bleeding disorder, and when they saw his arm they were concerned. He had hit it hard in the stockroom, and I could hear the concern in his voice.   To read the rest of the column click here.

The Comfort of a Port

Originally published March 20, 2019.

The unimaginable has happened. My youngest son, Caeleb, had his port removed.

Of course, when someone with a bleeding disorder has a port, it’s usually not forever, so why is it a big deal for my 13-year-old son? This was his seventh port. He has had a port in his body since he was 11 months old. With a nasty inhibitor (that is still active) and poor venous access, a port has been part of his life. A part of our family.

In my home, a port has provided a sense of comfort. My adult son, Julian, had a port for five years starting at the age of 1, and it was a lifesaver. Going on trips was not a problem because infusing had become much easier with a port. It gave my husband and me the freedom that we had not experienced with a hemophilia diagnosis. A port helped me feel like I had some control over this crazy, rare blood disorder. It brought a sense of comfort knowing that I could administer factor quickly.

While Julian never had a single infection or any type of complication with his port, Caeleb experienced every kind of complication possible. That is why he had numerous ports over the years. But despite the problems with port infections, a cracked port, a port that worked its way out of Caeleb’s body, and ports that flipped over, I still had the hope that if I needed to get factor into my son, the port would help me get the job done.

Caeleb has not had a bleed in over four years. During that time, my husband and I were accessing Caeleb’s port daily and infusing. It was great. His quality of life improved, his inhibitor came down, and the factor was helping Caeleb lead a “normal” life.

A year ago, we moved to a new treatment that called for a simple injection rather than an infusion. It has been life-changing. When the hematologist told us it was time to consider removing the port, it almost sounded like an idea to dream about rather than something that would actually happen.

The surgery lasted all of 30 minutes. The port slipped out without a problem, and Caeleb is now port-free. I kept waiting for post-operative bleeding to begin, but it didn’t. My son was cleared to go home on the day of his surgery. The day of his surgery! No morphine needed, just Tylenol post-op.

It’s funny that I still have anxiety running around in my body. The port (aka Jim Bob) is gone forever. If Caeleb has a bleed, my husband or I will need to rely on a peripheral stick. I know this is how many people with hemophilia handle their disorder, but when you have lived with a port for 12 years, there is a strange sense of loss that comes into the picture.

My level of control (like I really had any to begin with) has changed. I never believed our community would be in this place of groundbreaking treatments during my lifetime, yet here we are. My mighty warrior Caeleb is reaping the benefits, and for that, I give great thanks.

One-word Resolutions for the New Year

I am already looking forward to 2019. The first half of 2018 was not filled with joy, but fortunately, the last six months have been pretty wonderful. Part of this has been Caeleb’s new treatment with Hemlibra (emicizumab-kxwh). It has truly changed our lives. His quality of life has improved by over 100 percent. It is a miracle.

How in the world can 2019 be better? I do not believe in New Year’s resolutions. I have tried too many times to better myself, only to fail by Jan. 5. So, I’ve adopted a new way of approaching the New Year. I select a single word as my focus. Some of my previous words have been “intention,” “hope,” “joy,” “enough,” “change,” and “flourish.” I find that having one word as my focus gives me many different ways to be successful.

Consider where you are in the midst of your bleeding disorder. How can things be better in the near future? Are you looking forward to a change in your treatment? What about your quality of life? Maybe you are about to embrace some activities as a catalyst for bigger changes to your health. This is the time of year to start considering how you can move toward having a healthier year.

To read the entire article, click here.

PTSD Will Not Define Us

My seventh-grade son, Caeleb, is the new kid in a small, rural community where everyone has grown up together, so it’s hard to fit in and make friends. He comes home most days with a tale of mistreatment or insensitive comments directed at him. It breaks my heart, but the situation is improving. However, last week he told me about one child’s comment that hurt me deep in my soul.

“You walk funny,” the child said to Caeleb as he mimicked his limp. Caeleb replied, “Yeah, I’ve had some problems with my knee.” They went back to playing ball after lunch.

My son, in his retelling, did not seem to be bothered by the comment. Of course, the Mama Bear in me wanted to find the kid and scream, “You have no idea what he has been through! You will hopefully never understand the pain my son has endured that’s caused his limp!”

It sounded like the kid meant no harm; he was merely being observant and asking a question. Regardless, the story sparked a flashback to painful times for me. The question raised out of curiosity could have triggered memories in my son of the long days and nights with a horribly swollen knee.

The question took me back. Some would call it mere memory, but I know it as post-traumatic stress disorder (PTSD).

PTSD heavily affects war veterans, but it also affects others who have had traumatic experiences. When I take my mighty warrior to a treatment center to have blood drawn and a nurse walks in the room with a bucket of gauze, tubes, alcohol swabs, and needles, he tenses up and his entire personality changes. I sometimes have to snap my fingers to get his attention and bring him back to reality. It is frightening to see him regress to the scary moments of the past.

My husband and I feel the change in our bodies when we walk into a hospital and encounter the familiar smells and sounds. We can’t get out fast enough. Trauma changes a person’s life. My two sons are victims of the genetic bleeding disorder inflicted upon them.

My sons are, wonderfully, encountering few bleed episodes. However, it doesn’t take much to flash back to the painful times. It is not healthy to live in the past. Instead, I focus on what is yet to come. While learning from mistakes is a good thing, I refuse to let hemophilia define my sons.

It is my job as Mama Bear to keep my cubs moving forward as they learn how to take care of and advocate for themselves even when it is uncomfortable.

Invisibility, Not the Easy Way

I loved watching the Harry Potter movies with my sons, especially the earlier ones where Harry, Ron, and Hermione were much younger. The magic and wonder of wizards and Quidditch were fun to imagine. I especially liked Harry’s invisibility cloak. “Mom,” my son said, “wouldn’t that be cool?” I immediately answered, “Yes, it would be cool.” But sometimes being “invisible” is not beneficial.

In the bleeding disorder community, there was a time when having hemophilia was an obvious, physical limitation for many. Damaged joints caused people to limp and often rely on walkers, crutches, and wheelchairs. Joints that bled numerous times would never be the same in function or appearance. It was obvious that something inhibited the person from being mobile. There was never doubt that the individual had a physical impairment.

Fast forward to 2018, and many with hemophilia are living lives the older generations could only dream of. Factor products are much safer and more effective, which leads to less bleeding and joint damage. Many with hemophilia play basketball and soccer with ease (and continued precaution). And the “hemo swagger” of the past? Many never experience it. Yes, this is fantastic. However, when our community fights for insurance coverage, choice of factor products, funding for hemophilia treatment centers, and even 504 plans in our schools, the unaffected world does not see an impairment.

The uneducated world sees a little child playing and running with ease. What they do not see is the port in their chest or the needle marks at the sites of regular infusions. They do not see how a child must learn to accept needle pokes as a way of life. And they surely do not understand how a 12-year-old boy can have arthritis.

My 12-year-old has arthritis and the “hemo swagger,” neither of which are always easily seen by those who do not know his hemophilia experience. When he suffered from constant bleeds and could still walk, we would park in an accessible spot at the store. The stares and comments from onlookers were horrific. They had no idea that my son suffered more than they probably would in a lifetime.

We no longer need the handicapped placard, but there are hundreds of thousands of people who do need that placard. On the outside, they are seen as physically able, but before you judge them, stop for a moment and consider that they may be fighting a battle you could never comprehend.

Invisible Disabilities Week is Oct. 14-20. Rather than judging someone as they leave their car in the accessible parking spot, take a moment to give thanks for your health. You may need that spot one day, and you will hope that those walking past will not be filled with judgment, but with kindness.