I didn’t really understand the severity of the problem when I spoke to my husband on the phone. I was in Dallas on business, and our four year old little girl was at home with Daddy, developing what seemed to be her first ever urinary tract infection. “She won’t get off the toilet,” he said. “She feels like she has to pee all the time.”
When the test came back clean, we figured it was just one of those things. But she wasn’t getting any better. In fact, she was more adamant than ever about having to be near the bathroom. When I arrived home from the airport at almost midnight, there she was on the toilet, dark rings of exhaustion under her eyes and a rash in the shape of the toilet seat on her bum. I knew something was very wrong.
She had been sitting in the bathroom for almost 24 hours straight.
She didn’t want to leave the bathroom, so I took lots of pillows and blankets and drew her close to me. Eventually I was able to coax her to the den floor where we slept — or more like floated in a sort of half-state between exhaustion and anxiety — on couch cushions and a mass of tangled throws. Still, she writhed in what seemed like pain and held her crotch in the tell tale sign of a child who has to pee. She did this even in her sleep. My mind raced through all the possibilities: bladder cancer. horrible rare tropical disease. oh God had someone sexually abused her? insanity. brain tumor. I went through it all.
That was the first rough night of a six-month journey to discover what was wrong with my girl. It wasn’t easy. The medical community took the path of least resistance, wrote us off numerous times and forced me to become that mother.
Let me just stop and tell you loud and clear the point of this post: If you think it’s time to become that mother for your kid, do it. Call me. I’ll talk you through it, girlfriend. Be the warrior your child needs — her David to their white-coated Goliath. Because your intuition is dead on. When you are the one responsible for that little life, when that little life has pooped and peed and puked on you, bitten, suckled and cried at you — you know. Trust me, if you won’t trust yourself. You know. And you have to be their Warrior Mama because they don’t got no one else.
It took multiple trips to her pediatrician, two visits to two different emergency rooms, two different pediatric urologists, a child psychologist (who may have been more for me than for her) and six months before we got a proper diagnosis.
Let me describe life for those six months. Car rides became a fear-inducing endeavor that required driving faster than was legal and intimate knowledge with all the bathrooms along the projected route. Costco trips were extended by at least a half-hour to account for multiple, unproductive trips to the bathroom. Bedtime was a stress-filled multimedia event that required calming books, a sleep cd, and appropriate lighting in a desperate attempt to create an atmosphere that would help her relax enough to fall asleep — after, of course, a bazillion trips to the bathroom.
We came to understand that just because she felt like she had to go didn’t mean she actually did. But that didn’t help her at all, because she insisted that she felt like she was absolutely about to pee and would writhe in pain, clutching herself and tearful.
Her pediatrician was a voice of reason and support, and in hindsight I think she knew what the problem was, but felt that the severity of the case warranted a specialist. I think she was right on both counts — unfortunately, it’s apparently hard to find a good pediatric urologist. At least one that knows about little girls. It seems that most of them deal with boys and girls are, well, a lot more complicated. Anyway, early on she prescribed a muscle relaxant that seemed to help, and referred us.
The first E.R. we went to (that morning after I got home) told us that she might have a bladder infection but most likely it was behavioral. They told us to get a shrink because she was doing it for attention. The first pediatric urologist told us she was fine — a routine UTI. The preschool teachers told us it was a defense mechanism — that she claimed she had to go to the bathroom in order to remove herself from a classroom situation that was making her uncomfortable for whatever reason.
She seemed to get better for a while, with the medicine and our understanding that she was not being difficult, that she really was suffering from something. The counselor we took her to was awesome. She helped me to understand that I didn’t suck as a mom, she confirmed that I knew my kid best, and overall comforted me as we tried to figure out together what was going on. Best of all, when Delaney had a severe relapse and another midnight trip to the ER, Rebecca was able to witness the behavior at its worst and tell me once and for all that this was NOT behavioral. This was physical, and that I needed to advocate for my child and insist on proper care. It was the strength and encouragement I needed to become the Warrior Mama Delaney needed me to be.
The E.R. doctors and the specialist kept trying to tell us it was a urinary tract or a bladder infection. But the reports would go back to her pediatrician, Dr. Y, who would take her off the antibiotics and insist it was not a bladder infection. By the last visit to the ER, when they came back with the usual “it’s a bladder infection” and I asked them what the levels were (because by this time Dr. Y, had educated me on the numbers that indicate a bladder infection) they seemed surprised that I knew this, annoyed that I questioned them, and insisted that they were right despite the numbers saying otherwise. I never bothered to fill their prescription of the usual pink bubble-gum flavored liquid.
By this time, I was exhausted. My husband was at his wits end. I went to Dr. Y — a mom of five children — and asked her. If you were in my place, what would you do? How would you get these specialists to listen to me and give my daughter what she needs? She referred me to the second pediatric urologist and said that I should ask to speak to the doctor before the appointment.
I remember it very well — the moment my Warrior Mama rose up out of me to take command of the situation. She is the mercenary within — the quiet solitary soldier in wait. And she. was. done.
I was sitting in my car in the parking lot of CVS having just filled her prescription again. I was feeling horrible — turned out, I had a fever myself — and fed up. I called the office to make the appointment and spoke with a horrible woman who refused to ask the doctor to speak to me on the phone before I saw him. I kept trying to explain why it was necessary, I kept explaining I wasn’t expecting a diagnosis over the phone, I just wanted to be sure he had to whole story, and she just heartlessly and nastily told me that he doesn’t split appointments. She was a horrible, horrible woman and I still hate her a little bit. I’m sorry, but I do. I know that’s not right and hate is a strong word but this was my kid, damn it. My kid and I was desperate and she was mean. She made my Warrior Mama stronger.
She finally agree to “let me write a letter” (bitch) to the doctor before the appointment. Oh what a letter it was. I told him, among other things, “I do not want to be sent home with yet another prescription for antibiotics for a non-existent bladder infection. Before I leave our appointment, I want you to be able to look me in the eye and tell me you’ve done everything you know how to do to rule out something physical before you tell me it’s all in her head.”
When I arrived in the office on the day of her appointment, I said the same thing to the nurse who took our history. When Mr. God-Complex finally graced us with his 5-minute-for $250 presence, I sent Delaney out of the room, looked him in the eye, and said it again, white coat be damned. He didn’t stay long and he wasn’t extremely warm and fuzzy, but in the end it was his office that ended up figuring it all out.
It was exhausting and emotional and really, really hard to be that mom, but my daughter deserved it. And it worked. To make a very long story short, my daughter is now a healthy, well adjusted little girl who, at the age of four, was experiencing some of the most severe bladder spasms that urologist had ever seen in a child.
When you pee, your sphincter muscle, which is normally shut tight, releases while your bladder, which is normally relaxed, squeezes. Delaney’s bladder would squeeze without warning, making her feel as if she were about to wet herself. In response, she would squeeze her sphincter muscle to stop it, which in turn made the bladder spasm worse. When she actually was in the bathroom, her sphincter muscle was so tight that her bladder couldn’t completely release all the fluid, causing even more spasms. It was a vicious cycle that caused anxiety and was made worse by anxiety, especially when she was away from a bathroom.
Once we figured out what was going on, we kept Delaney on muscle relaxants and started bio-feedback sessions. Essentially, we taught her how to do Kegel exercises. Electrodes were placed strategically on her body, and she looked at a graph on a computer screen that indicated her muscle tension. We told her to squeeze like Superman and make the graph go way up high, and then melt like chocolate ice cream to make it go really, really low. Now, she had a baseline that I could use so that when she was on the toilet, I could remind her to melt like chocolate ice cream. This helped her to relax enough to empty her bladder fully.
Soon she was doing so much better — but we had a huge transition coming up: Kindergarten. With a structured bathroom schedule looming ahead of us, I was very concerned. At orientation I mentioned to the principal that I had some concerns about Delaney’s anxiety levels, and I got the typical oh first time mom anxiety response.
Rise up, Warrior Mama. Rise up.
I scheduled a meeting anyway, put my Warrior Mama chain mail on, and explained to the principal that this was not the typical Kindergarten nerves. I can show you records from multiple visits to the pediatrician, two different ER’s, two different pediatric urologists and a child psychologist that Delaney has a very physical need to be able to use the bathroom whenever she needs to, and that she is not being disruptive when she needs it.
Delaney was placed with an awesome Kindergarten teacher who gave her full permission to use the bathroom whenever she needed to. We kept her on her medication for the first few months to help her bladder stay relaxed through any anxiety she had. Her first day was a little hard but soon she was absolutely thriving. By month two, her frequent bathroom visits were over. By month four, she was off the medication. By month six, we said a sad farewell to her counselor who we loved.
Today, Delaney is a perfectly healthy, slightly goofy, beautiful, well-adjusted and awesome almost 9-year-old tom boy.
And she’s got a little warrior in her, too.