Three years ago I entered the fight of my life. The fight to save my son, my soldier from losing the use of his body or potentially his life. I took on the United States Army. This story is a bit lengthy, but I promise this is the Cliff notes version. I will start at the beginning….
He Dreamed of Being a Soldier
From the age of three, my son spoke of nothing more than being an “Army man.” Boy does that strike fear in the hearts of mothers everywhere. Like many parents, I figured he would outgrow the childhood dream of joining the military. My dad was LRRPS in Vietnam, and I had ZERO desire for my son to follow that path. However, his dream does not mean my dream. I got to follow my dream, so I was supportive of him following his dream. Although, it scared the life out of me!
HE IS A SOLDIER!
In May of 2013, he completed basic training and was truly a Soldier. He was so happy with the start of his lifelong dream, and I was very proud. Still very scared, but proud! They were shipping him to Vilseck, Germany for his first post. Not the news this mother wanted on Mother’s Day, but those were the orders.
It was a long year from when he caught the flight to Germany until I saw him and could hug him again in June of 2014. It seemed that overall his dream was coming to fruition, and he was having amazing adventures living in Germany.
He was homesick occasionally, and we missed him like crazy. He made it home, again, just after Christmas of 2014, and had leave planned for the summer of 2015. We were so excited that we would at least get a visit every six months. Little did we know we were just experiencing the calm before the storm and plans would change – drastically.
Mama Bear Gets Called to Duty
In April, 2015 right around my Soldier’s 21st birthday, he mentioned that his right hand and forearm were going numb. He was having trouble gripping items, including his duty weapon. He thought it was an ulnar nerve problem or carpal tunnel.
Being ever the kind and nurturing mother, I pointed out it was probably from playing too many video games. He just needed to get off the games and use his arm. My usual mantra was “rub some dirt in it, you will be fine!” This time I was completely off base.
We continued to discuss the symptoms, and he reached out to medical. He was scheduled to be home on leave in July. Two days before he was scheduled to fly home, I get the dreaded call. “Mom, I can’t come home. They have put me in the hospital.” WHAT?????
A physician’s assistant, that had been trying to get to the bottom of my son’s illness, decided this appeared to be a serious neurological condition and hospitalized him. There would be no two week leave to come home.
So, mama bear went to Germany. After meetings with neurologists and others, it was decided that my son would be sent to Landstuhl, Germany for diagnosis and treatment. The possibilities did not sound real favorable, but I know our military has outstanding medical care available in Landstuhl.
I came home believing that they would take excellent care of a Soldier. The moment I landed he messaged that they diagnosed him with a serious neurological condition that effects one side or your body. This specific condition is often associated with various vaccinations, of which our military members get many. It was progressive, but there were treatments available to slow the progression. The doctor was outstanding and had a treatment plan set up quickly.
The part I did not understand was that his company command thought the travel requirements for his treatment were too difficult to manage. They bullied and harassed my son, and interfered in his treatment schedule. Soon, the symptoms were in his left hand and forearm, as well. This led to a much worse diagnosis. Chronic inflammatory demyelinating neuropathy (CIDP). This disease can affect the entire body. Not the news we wanted.
Arrangements were made to return him to a Warrior Transition Battalion (WTB) closer to home, so that he could concentrate on health and healing. These battalions are specifically supposed to help sick and injured soldiers who are unable to perform their official duties. He would be close enough to home that we could visit him and participate in his treatment and recovery. FINALLY, we thought we were on the right track to get him well and get him home. Oh how wrong we were.
HE IS REALLY SICK?!?
My soldier arrives in Fort Riley, Kansas in February, 2016, and I am so happy to be able to see him and participate in his treatment. However, he got ZERO treatments until Mother’s Day weekend. He was to have them every three weeks. By the time treatments started, he had lost the feeling in his lower legs and was wheelchair bound. Nothing like a mama bear when the cub is sick. We will suffice it to say some calls were made and doctors dressed down.
Another outstanding Mother’s Day courtesy of the Army. I arrive to pick up my son who is now in a wheelchair. I cannot explain the absolute sick feeling pulling up to my son in a wheelchair waiting for me. However, thanks to the calls he was going to get a treatment each day that weekend. I was going to be there to make sure!
Fast forward to July, and we are again missing treatments. He looks and feels worse every time I see or talk to him. We had to bring his battle buddy to stay with him and provide non-medical assistance. Nothing is happening, and he looks like he just got released from some type of concentration camp.
This is where mama hits her limit!
D.C. HERE WE COME
When it became clear they were not going to adhere to a treatment schedule, order the correct dosages of medicines, deliver the medicines, or make any other efforts to help, I stepped in.
You might have heard of helicopter parenting, but in this instance a friend told me I was “An Apache Gunship.” I am not ashamed. I reached out to contacts, emailed the White House, emailed the Pentagon and made news appearances. I wanted proper healthcare for my son, and they only place the military could give that level of care was Walter Reed. It was much farther from home, but I would rather have him getting healthy than watching him die.
The Pentagon was extremely responsive and gave the go ahead for him to come to Walter Reed the following week. They had him set up with the Director of Neurology, and were ready to help get him healthy. However, the WTB commander was less accommodating. He would only give permission for a short trip for diagnosis. Despite the Army Surgeon General’s office recommending a transfer. We were going, and I would fight the transfer from Walter Reed. Time was of the essence.
When we arrived in D.C., we were met with outstanding care and personnel at Walter Reed. The doctor was confident in the original CIDP diagnosis, and had an aggressive treatment plan to try to get my Soldier back on his feet. It would not be an easy road, but a manageable road at Walter Reed. The base hospital at Fort Riley was not equipped to handle this diagnosis and treatment.
I ended up staying in D.C. for two weeks fighting with a ridiculous commander, with no medical training, running a Warrior Transition Battalion full of sick and injured soldiers. I spent everyday for nearly four weeks on the phone and emailing with the Pentagon, who could not explain how this commander was ignoring the directives of higher ranking officers. The Army Surgeon General even turned him over to J.A.G. for investigation.
I had three Congressional inquiries opened. The commander held a secret meeting where he informed all present that he had been through almost 30 Congressional inquiries and nothing ever happens. Why in the world would one commander have that many inquiries opened? INCOMPETENCE!
At the very time I am fighting to save my son, one of the other soldiers assigned to the same WTB lost his battle. He suffered the same incompetent command who was more concerned with being in charge than providing these Soldiers with proper healthcare. Proper healthcare came too late to change his outcome. I refused to let that happen to my Soldier.
Continued calls with the Pentagon, Senators and many others finally yielded results. My email to the White House got a General involved who finally ordered this incompetent fool to sign the orders transferring my son to Walter Reed for proper medical care and treatment. PRAISE GOD and all the many supporters who prayed for us and covered for me, so that I could fight this battle.
HE IS ON HIS FEET!
After two months of consistent and aggressive treatment, he made it to his feet. He needed a cane, but the wheelchair was GONE! He was making progress, and was getting top notch healthcare. This mama was finally starting to breathe!
It took a full year at Walter Reed to get him back to as normal as it gets with CIDP. He worked hard and the medical professionals worked hard, and the benefits were AMAZING! He got to come home in August of 2017 medically retired from the U.S. Army. Walking without a cane! He will always need treatments to stall the progression, but WOW what a difference!
FAST FORWARD TWO YEARS
He still receives treatments every few weeks, and there are good and bad days. However, he has persevered and overcome more than the doctor thought possible three years ago. He was able to wade in the Kenai River in Alaska this summer and fish for salmon. His battles with CIDP are not over, but in the fight of our lives – WE PREVAILED!
I have always had the utmost respect and pride for Service Members. That only grew through the fight. I realized that we have no idea the battles faced by these men and women who CHOOSE to protect the rest of this nation. It is little wonder that disabled veterans suffer so greatly. They face battles we can’t see, and that often are ridiculed by the very people they protect.
The next time you see a current or former service member, thank them for their service. They deserve all of the respect and accolades possible for their very real sacrifices on behalf of all Americans. Be an advocate for your service members any chance you get. If I had not been willing to advocate for my son, I likely would not still have him. Every Service Member is worth the fight!!!