Lessons Learned: Raising Children with Disabilities

In the winter of 1995 Mrs. Accountant and I were a young married couple anxiously awaiting our first child due in late February. Winter in NE Wisconsin has a tendency to get bitter. The winter in question was no different. The holidays were still fresh in our mind on January 7th. My business was a remodeled basement; the following year would be my first with a store front.

The air felt colder than normal and Mrs. Accountant was feeling the effects. The stress of pregnancy coupled with the weather had her bed-ridden. Early on the 7th she got up and wandered to the couch. Then the world turned upside down. Her water broke seven weeks early. Dumb as I was I still knew this was really bad.

I rushed Mrs. Accountant to the hospital. The doctor decided the longer the baby stayed in mom the better. For two days my wife suffered. The doctor finally relented and had Mrs. Accountant transferred to a hospital with facilities for such a premature baby.

It was an intense delivery. I was not allowed in the delivery room. Our first baby entered the world seven weeks early and spent 19 days in intensive care. If I had not worked out of my home at the time I would have never stayed in business. Working from home allowed me all day with my wife and newborn daughter.

The medical problems were only beginning.

Chapter 2

Five years later Mrs. Accountant and I decided we wanted one more child. Two seemed like a good number and we had it in our heads if we only had one child she would be spoiled. (We spoiled her anyway, with love.)

The doctors were taking no chances this round. The ultra sounds were all normal; all tests were normal. It did not matter to Mrs. Accountant and me the gender of our child so we waited for our baby to enter the world to know.

Shortly before the due date the doctor decided a C-section was the safest course. This time I was allowed in the delivery room. The operation went smooth. As the baby slid from mom’s belly one doctor said, “Congratulations, sir. You have a son.” Another doctor said, “Look again doctor. You have a girl, sir.” All I remember was muttering, “It’s both.” The room was silent the remainder of the procedure.


I died that day. Everything you read about me or from me is from a man who did not exist before that day in the delivery room.

Numb, I went to the office and told Bev what happened. Bev, now retired, was with me forever. I told her I was not coming back. It was over. Nothing in life mattered anymore. It was the closest I ever came to quitting what I love doing so much.

Chapter 3

The medical problems of a cisgender* child are legend. The mental problems were also hard to handle. My youngest daughter’s birth certificate reads: gender: “unknown”. The birth certificate was later reissued. Normally a Social Security number is issued at birth. We had to wait until we knew the gender for my child.

The hardest part is talking with people. You know the first question asked of new parents: boy or girl? I could not stand it. I was crushed. How do you say “both?

Under stress and distracted, Mrs. Accountant and I had serious decisions to make. Our baby was going to die within a few months if we did not act quickly. The gonads didn’t drop and were pre-cancerous purplish masses that had to be removed: surgery one. My child’s genital were malformed and neither truly male nor female. The urinary tract exited a penile structure and internally. Infection was imminent if the issue were not remedied: surgery two.

The doctors did a DNA test. It was discovered my baby was conceived male, but the Y chromosome became isolated after a few cell divisions. My child’s body was 15% XY (male) and 85% X (androgynous). The second X was missing. In the absence of a sex chromosome the human body tends toward the androgynous, or more feminine. In our minds our baby was a girl. It was also easier for the doctors to construct a female than a male.  We had two daughters.

A Social Security number was issued and the birth certificate updated.

Chapter 4

I was racked with guilt. It was my fault. Something about me caused this failure. Of course this is not true, but back then I felt that way. Deep down, I still do.

Two children; two children with serious medical problems. As I wrote Chapter 2 and 3 above I broke down. After all these years the emotions run deep and cause immense pain.

Support groups are hard to find. The closest thing to cisgender is transgender and they are not the same. A transgender has a choice in surgery, my daughter had none; it was either create genitals or die. How would you like that choice as a parent? And if you guess wrong . . .

The therapy for mom and dad did not last long. I discovered quickly most people with children like ours were fucked up in the head. They kept it a deep, dark, dirty family secret, as if the child was somehow an abomination. Mrs. Accountant and I took the opposite approach. It isn’t a secret; it is what our daughter is and if you can’t handle, go fuck yourself.

Our attitude allowed our daughter to grow up normal. There was a sigh of relief when she took to girlish things. I started joking I had 1 ½ daughters. Some people were offended. They can re-read the last sentence of the last paragraph. We laugh and joke about it. It isn’t a secret and she is not abnormal; she IS normal. A normal girl. (I also joke I have 34 kids of which two have survived . . . so far. The rest had an accident in the pond. I am waiting for the police to show up and dredge the pond for bones. I have sick sense of humor. I have to; it is a survival technique.)




Medical Bills, Money, and Work

More than ever I had to be a parent. Work was secondary. As a business owner with employees I was allowed ample time from the office until my head was set straight. Money, which was not an issue since early adulthood, returned. We lived in the hospital. Surgeries were handled at Children’s Hospital a two hour drive away. Mrs. Accountant always stayed; I sometimes went home and to the office. The truth is I had to get away. It hurt too much.

Insurance covered many of the medical bills, but not all. It was a burden. Ample savings and investments allowed us to survive unscathed. Thank God for frugality at a young age! I shudder at the thought of having to leave my wife and daughters to go to work each day during such an extended crisis.

Once the first few years passed the medical bills declined. Then puberty showed up, or, well, was induced. You see, without gonads or naturally occurring estrogen, my little angel would stop growing around age 10 and would go straight to old age, brittle bones, and death. The medical problems have re-escalated.

This kid of mine has gone through several more surgeries. She had three this year, but we look good for a while now. Gall bladder removal, kidney stones, and migraines are all part of the course. She has an allergic reaction to estrogen so it is difficult finding a balance. She stand 4 foot 8 and will never grow another inch. She is all girl, for sure. A very petite girl.

systemic_sclerosis_finger

Scleroderma

What about the Oldest Daughter?

My oldest daughter felt left out and jealous at times. She had a point. As she got older she adjusted and understood. The medical issues she had were less life threatening at the time, but have grown as issues as she has grown older. She suffers from Scleroderma and Raynaud’s. I hyperlinked the terms allowing the professionals to explain the details of each disease. In short, Scleroderma calcifies the skin until there is no feeling and Raynaud’s causes limited blood to fingers and toes. Cold turns her fingers and toes black. She lives in Wisconsin, but 80 degrees F can be considered cold at times for her. She could lose digits and her love is art. Life is all too often a cruel bitch.

Mrs. Accountant and I care deeply for our children. We have been hit with a one-two punch and remained standing, as resolute as ever.  The prescription medications and doctor bills are one of the largest of our household expenses.

Managing the Minefield of Major Medical Bills

Medical has unloaded well over $1 million from my net worth. There was never any real choice. I will never walk away from my kids! I can live with poverty. I chose my children and Mrs. Accountant over financial wealth if that is the only choice I have. Fortune has granted me both. I am luckier than words can say.

And still, my medical problems are small compared to many. I fight back tears when I see a client with medical issues well beyond anything I have had to deal with. My children are alive! Not everybody is allowed such a gift.

Medical issues affect how we plan financially. Making too much money can leave you with less. Medical bills topped $1 million the first year of my youngest daughter’s life. Picking the right insurance becomes the most important financial decision each year. Social Services help cover many medical bills when the children are very young and when they strike out on their own because they earn so little.

There are other related costs most families don’t face. Doctor visits frequently are a full day drive away. A 15 minute doctor visit can easily top $500 and is not always covered by insurance. The prescriptions are unreal for my girls. The youngest takes pill like a 90 year old. She has no choice. When certain medications are stopped she goes straight to menopause, old age, brittle bones, and death. There is good news! I am in awesome health and take no medications and rarely require doctor visits.

Raynaud's Syndrome

Raynaud’s Syndrome

The answers are not simple, nor do they fit in a neat package. My goal here is to show you how lucky you are if you don’t have medical problems. My goal is show you are not alone if you do. My children are a gift I would never give up. I can live with a challenge. Keeps life interesting.

More than ever, if you have medical risks you need to adopt frugal and responsible financial habits. If your income is low, consider Social Services for help. Many costs can be covered. Also consider your income. Sometimes earning another $10,000 will cost you more in insurance and medical costs than the additional income. By living a reasonable lifestyle you can protect yourself and your family.

I know I dumped a lot on you, kind readers. I can only teach what I know. This post was in the queue for months and it had to be written.  We talk money around here and nothing affects financial wealth more than health. Even in countries with socialized medicine (just about everybody, except the U.S.), health problems still affect finances and quality of life. Medical issues take you away from your job or business, the engine of earned income. Investing early creates a buffer protecting you and your loved ones from such serious body blows. It also allows you the chance to step away from work so you can be with your family.

And to my friends suffering the same issues or worse: Never give up. Money is nothing, only a tool. Life is everything. Live every moment of every day. They will not last forever. Love. Love with every fiber of your being.

I am not a religious man so I will close with a verse from the Bible:

Now these three things remain: faith, hope, and love; and the greatest of these is love.

 

* Cisgender, sometimes referred to as cis, is a person whose gender was assigned to them at birth.

 

Note September 20, 2017: When I wrote this post I had been introduced to a new word about my daughter’s condition: cisgender. At first I thought this was the new “politically correct” way to speak about intersex children. It isn’t. I was using the term wrong as a comment below mentions. There are so many terms bandied around today to deal with gender and sexuality it is confusing even to a dad with a daughter born intersex. So, to clarify, the article above is correct as long as you replace cisgender with intersex. No matter what name society uses to identify my daughter’s condition, I still love her to death. She is my sweetheart along with her sister and mom.

 





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Keith Schroeder

21 Comments

  1. Kathleen on October 26, 2016 at 1:14 pm

    What a wonderful Dad. Your wife and daughters are very fortunate. Wishing your family all the best.
    P.S. Short girls rule!

    • Keith Schroeder on October 26, 2016 at 1:56 pm

      Thanks, Kathleen.

      • Mimoza on October 27, 2016 at 1:24 pm

        Man, what a heavy posting. It made me cry, well, maybe because I’m also a parent and I react very sensitively to anything sad about children or parents (because if parents die children will become orphans). All I can say that you’re indeed fortunate to have created the wealth to deal with such expensive health-medical maintenance of your children. I wish you continued financial success and carry on your ‘sick’ humor you really need it.

        Could you write (if you deem it appropriate) a comment or perhaps an article how you not being rich would have lowered your bills? And address the point you made that $10k more in income would end up being more expensive in medical bills. I totally believe you, but if you could elaborate on that it would be helpful.

        When you say “$1Mln in medical bills” is this OOP after whatever your insurance covered for the year or is it the “raw non-negotiated” bills that get lower after insurance processes them? If that’s your OOP, it’s appalling. People pay for insurance but so many services and medications are not even covered by that damn expensive insurance. It boggles my mind. It’s exactly how I’ve imagined: America wants you healthy or dead, otherwise it will totally bankrupt you. Yes, it sounds crude, but it’s true. Thank God you have the means, some other people are not as fortunate.

        • Keith Schroeder on October 27, 2016 at 2:11 pm

          My OOP was less than a million, Mimoza. The original medical bills were seven figures. I estimate my OOP for the first 16 years of my daughters life at around $300,000, all years combined, not including the cost of insurance. I will save your comment in the queue so I can think about your suggested post. I have a lot of ideas to deal with this regardless the income level. There are a large number of people needing this kind of information.

  2. James Roloff on October 26, 2016 at 1:32 pm

    Our daughter was born 7 weeks early this year. A surprise that really isn’t on your radar until its 2am and you are at the hospital.

    My wife and I are debt free and have an emergency fund in place. Financial wellbeing allowed us to focus on getting through the tough time in the NICU. I resonate with what you are saying regarding finances giving you freedom, and also that kids can really put your life in perspective.

    • Keith Schroeder on October 26, 2016 at 1:57 pm

      We are not alone, James. It is an experience like no other. Be well, my friend.

  3. John McCarthy on October 26, 2016 at 3:54 pm

    Thank you for putting life in perspective for us today. It is easy to become so focused on ourselves that we are blind to the stories of others around us.

    • Keith Schroeder on October 27, 2016 at 9:38 am

      Always remember the stories. They give life meaning.

  4. Jeff Cady on October 26, 2016 at 4:27 pm

    Thanks for sharing this story, Keith. I’m a new dad to a baby girl. Your open approach to facing your girls’ medical disabilities head-on is inspirational.

    • Keith Schroeder on October 27, 2016 at 9:39 am

      Congratulations, Jeff. Hold your child close. There is no guarantee what tomorrow brings.

  5. Gwen on October 26, 2016 at 4:33 pm

    Wow that is intense. You and Mrs. Accountant handled those curveballs like champs. Thanks for sharing such a difficult topic.

    • Keith Schroeder on October 27, 2016 at 9:42 am

      We handled the curve balls, Gwen, because we had no choice. There are two goals here: 1.) I want people suffering to know they are not alone and to always keep hope, and 2.) I want people to always be kind. The person you are upset with may be carrying a greater load than you imagine. I hope my stories give people hope and motivation.

  6. JT on October 27, 2016 at 5:39 am

    Keith, your attitude and your priorities are inspiring. Thank you for sharing your story. Every day we have with our children is a blessing. If anything ever happened to my children, I would give every cent I ever earned, go into debt for life, if it meant that I could spend one more day with them (heck, just 1 more minute).

    • Keith Schroeder on October 27, 2016 at 9:44 am

      Our children are our greatest gift, JT. You guys do not understand how emotionally draining re-living these events have been. After all this time there are still a massive amount of repressed feelings. Call them self-defense mechanisms. We don’t have to give tons of stuff to our kids, only love. Even when they misbehave.

  7. TheHappyPhilosopher on October 27, 2016 at 7:14 pm

    I love the post Keith. Thank you for sharing something so personal. Whenever I feel sorry for myself I look for others who have it tougher than me, or have struggled with a burden that makes my life look easy by comparison. It is how I keep rediscovering gratitude. Give your family a big hug from The Happy Philosopher.

    • Keith Schroeder on October 27, 2016 at 7:32 pm

      Great to see you, HP! It was a difficult post to write. This post in part of my Lessons Learned series. I have about 20 ideas I would like to write over the next year on lessons I have learned in life. BTW, love your work, too. Your reading list helps me find good stuff that gets past me.

      • TheHappyPhilosopher on October 27, 2016 at 8:14 pm

        The toughest ones to write are the best ones to read. Keep writing please 🙂

  8. Adam on November 7, 2016 at 8:18 am

    Yeah, I’ve heard Medical bills are the number 1 reason for bankruptcies. 62% after a little googling. Since this is a financial site, I’m glad you came through it like a champ. I’m glad you and your family are working with the problems.

    • Keith Schroeder on November 7, 2016 at 9:46 am

      Every day is a work in progress. The risks to financial independence are higher with people suffering major medical bills.

      • Adam on November 7, 2016 at 12:21 pm

        Yeah, health is the thing I’m most grateful for when it comes to what I’ve got in life. I appreciate what I’ve got. I read a lot and once I started reading blogs, I read about health issues people have. I didn’t quite have an idea of what people were dealing with and all the different things that can go wrong.

  9. […] hate, kind readers. Hate always ends in pain for all parties involved. My youngest daughter was born cisgender, a genetic defect where her gender was assigned at birth because her gender wasn’t apparent at […]

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