Trudy Triumph's Neurogenic Bladder Blog

Parenting a Child with a Neurogenic Bladder

What is the likelihood that I, a gal who started a blog about neurogenic bladder, and is now writing a book about life with a neurogenic bladder . . . now, letting the cat out of the bag. . . raised a daughter with neurogenic bladder? I have never written about my daughter before this, because it was her story to tell and I did not want to invade her privacy. She is older now and has given me permission to share her/our story.

 I have some thoughts that I would like to share with you because I have been there and I understand. I get feelings of sorrow, frustration, pride, and even anger that go along with directing a child with a bladder/kidney deficiency through life.

Annika always wet her pants.

When she was in preschool I, her Mom, was frustrated because she seemed to be the only child doing this. I held her home from school several times because I was humiliated and embarrassed. When I look back now, I know I was prideful and bewildered. I did not know that this would be a chronic condition for my daughter. I read all of the books, had M&M’s and  stickers for rewards, I made a fancy chart, talked to the doctor and my friends. And I continued to read and read.  Nothing worked. It just was what it was.

She also had chronic bladder infections, as a child.

Finally we were referred to Children’s Orthopedic Hospital. Over the years, as a patient there, she was slimed with the gel in preparation for an ultrasonic peek at her kidneys  and later had the panel of urodynamic tests. Her doctor prescribed low dose antibiotics because of the bladder infections. She took Ditropan, for years, but other that making her mouth dry, it did little good.

The doctors told us that once she reached puberty she would most likely outgrow this problem because then her urethra would elongate and she would outgrow the incontinence and the chronic infections. I got over the frustration of it all, and we just did what had to be done. I do not remember a nurse pulling me aside to give me tips on how I could help my daughter. They were concerned for her medically but did not address the logistics of keeping dry and how to attempt to cope with accidents, that happened frequently.  

If she had a different personality type, things could have been worse, but she has always been a roll with the punches person, even if I was not. During her grade school years she was a busy child that ran like the wind and came home dirty from play. She was a rough and tumble kid and honestly not one time did she ever complain. She was just ready to live her life and she knew, (even though I did not,) that this life was normal for her and she just wanted to move on and enjoy her life.

I sent her to school in a Kotex (menstrual pad/sanitary napkin). After the Kotex became soaked with urine, she left it in the trash and tied a sweater or sweatshirt around her waist to hide her wet bottom. Her friends at school never noticed or didn't care, and she just learned to cope, taking it in stride, with little trauma or embarrassment. It was all she ever knew.

As a teenager and college student, and adult, she did outgrow the chronic wetting but she has  to pay attention to where the toilet is because she does not have much time to get there, due to a spastic bladder.

She also learned in college not to drink a lot of alcohol because it made her wet the bed.

As an adult today she still has a neurogenic bladder. It is different than mine. I have urine retention; she has urge incontinence.

Annika has now made me a grandma. She decided before the birth, to find a doctor who would give her a caesarian section, because she did not want to jeopardize or compromise her bladder further. She is not taking meds and not seeing an urologist. She is just coping with a bladder that needs attention and can’t be ignored.

I want to leave you with this:

Those of us not born with incontinence think that life with diapers, cathing, occasional wet pants, and the rest of it, is a death sentence, when indeed, it is not. For the person dealing with the issue, it is their life and normal for them. I think that first of all we need to treat our children normally, taking the drama, pain, sorrow and anguish completely out of it. These children deserve to be thought of as normal, as it is how their body works, whether chronic or temporary. There are not a lot of cures for nerve damage yet, so this life is what they will know.

When I look back at how sometimes I reacted to Annika as a little girl, I wish I had done things differently.

I would like for you to consider this.

I understand sympathy has its place. I get that. It is important for us to think about how sympathy most of the time, helps anyone with a chronic condition. When a person of any age is living with a chronic problem, I mean every day and night and the situation will stay and not go away, it feels more like a job and work. If you see your child working hard, then that deserves a compliment, because it is a job well done. The child going through this needs a cheerleader, someone who says, "You can do it." ," I am proud of you." “You are working hard and I just think that you are amazing, because you just do the job so well.”

Imagine  youself working at a hard painful  job and your boss coming up and saying to you, "Gee I am so sorry, I feel sorry for you".  How could you possibly get your job done with that negative, depressing attitude?  Couldn't you do your job better (keeping in mind that work is hard) if you had your boss praising you for a job well done?

It might be heartbreaking for us to watch our children suffer, but those emotions of sympathy and sorrow are not helpful for the kid that is doing his/her best to cope and just wants to be a kid.  Life is short!

My hope for you is that you don’t make the same mistakes that I did. Luckily I did not cause Annika to be ashamed of herself, because of my embarrassment. Children want to please their parents, in their hearts. For us to transfer our problems, worries, and emotions onto their lives is hard on everybody.

As an adult, my daughter has a fine beautiful life, even with a broken bladder. It is all she knows. She is just fine.

I hope this helps. . . more later . . . .

One Response to “Parenting a Child with a Neurogenic Bladder”

  1. ReplyTricia Sliter

    Thank you for this. I have a six year old daughter with a neurogenic bladder caused from a tethered spinal cord. Everyday is a challenge and keeping a cheerleader mentality sometimes escapes me. My daughter also has a positive attitude and seems to take things in stride. I hope that never changes. Thanks for the reminder to keep my attitude in check and to be my daughter’s cheerleader.

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