My mother’s wisdom

I just thought I would share this. I read a blog called Rolling Around In My Head, which is a blog of a guy (Dave) who is disabled and he goes around the world and speaks about disabilities. I would encourage you guys to go read his blog, he has some amazing posts. In one he talked about a home care worker that didn't see the man behind the disability, he said, "How do people who don't value the person behind a disability, a disease, an ailment, get into healthcare?".

So I asked him this question, "What do you tell one parent how to deal with the other parent who just refuses to accept the disabled child? What advice would you have given my mother to help deal with my father?". This is what we had to deal with as my father just was never around, and never accepted my disability. I asked my mother the same question and I thought I would post her response here too.

My Dearest Son,
How good it was to talk to you today about family and your disability. Thank you for your questions and insight.

First let me try to explain what it is like for parents to discover their child has a disability. I read a story once that seemed to open up an understanding for me. I do not remember the name of the story or the author, so this is my version.

There were a number of young couples that together were getting ready for a big event. They were all heading for Spain. They studied together, saved money for the trip, learned the language, studied the culture, what to do and not do, and one by one each couple went off and arrived in Spain. There was much rejoicing as each couple shared their experiences with the other couples.

However one couple boarded the plane and instead of landing in Spain, they landed in Holland. Here nothing was expected, or prepared for. It was all so strange. It was a deep shock. Then they found Spain was no longer an option to them and while their friends talked about their experiences, this couple was learning a new language, a new culture, very different from what they had ever known or prepared for.

This is what it is like to become parents of a child with a disability. There is a new land to explore, a new medical language to learn, a new culture of people, most wear white coats and speak in technicalese. Mostly it is an adjustment to a new normal and one where you feel very alone. Your friends are enjoying their children in “Spain” where you thought you were going, and they do not understand your new world.

Internally, most parents feel guilt. They wonder what they could have done to cause harm to this new- born baby. Questionnaires add to this feeling and well-intentioned medical staff continue to probe. “What did you eat during pregnancy? Do you smoke? Have you ever taken any drugs? Is there a history of this in your family?…etc” Of course the medical staff is trying to be sensitive and make their diagnoses but each question raises doubts that bounce off the guilt inside. I used to go through my life and especially my pregnancy in my mind with a fine tooth comb…was it this, was it that?

One of the questions you asked was, “What happens when one parent defects? What happens when one parent is deliberately absent?”
Well, honey, that is what happened to us. We landed in Holland and Dad left for Canada. Although physically he stayed in the family at least for a few years, emotionally he was in a country of his own for most your growing years.

There are always consequences. I believe for myself I went into overdrive, learning all I could about your disability. I went through the maze of appointments, hospitalizations, brace fittings, neurological tests, alone.

It was not always easy but it was never a burden.
Your two brothers tagged along and lived between Holland and Canada. Once I worried about what effect this was having on them. I discussed this with a Pastor who knew our family well and he said “Don’t worry, you have three fine boys who have become stronger and more compassionate because they have experienced sacrifice early in life.”

The fact that I was in a position that forced me to take a strong role may have somewhat alienated Dad, although he always had a choice to join us in Holland (he was a pilot after all). My strength did come from my new faith but before that, inwardly, very early, I accepted you as who you are and was delighted to have a third son. I had no extended family to call upon in those early years and it was very lonely.

Dad went into such a deep denial that he could look at the x-rays of your spine which contained no normal vertebra, a lung which was underdeveloped and ribs on one side that were malformed and crossed over one another, and say, “There is nothing wrong with the boy.” Your lifespan prior to surgery was early 20’s. Dad knew that.

Some of the consequences that I saw in you as you grew into a young boy were delightful, frustrating, confusing and humorous. What a character you were and are. You used the Velcro straps on your brace to make a ripping sound when the teacher bent over on your first day in school. You struggled with things people said to you, questions people asked, or worse, didn’t ask but stared instead. Others just turned away. You felt this rejection and your Dad’s absence. You responded with strangers from the age of four to about eight by lifting up your shirt and exposing your brace and saying, “Hi my name is Brad, and this is my brace.” You seemed to be saying, this is me, all of me, accept me or not. You were quite assertive about this.

With Dad you tried to please him, you wrote the cutest notes to him expressing fun and love for him, (I still have some) and you did things beyond your capacity such as pulling fallen trees out of the woods behind our house. You worked for hours and it was heartbreaking for your brothers and me to see. These actions were your cries to be noticed and accepted.

At school you were teased, and some children thought you were “contagious” and would not go near you. I also experienced comments from neighbors who felt that “handicaps should not be allowed in the school. They take up too much of the teacher’s time.”
As a child you could not have confronted Dad because children do not have the voice or vocabulary to express the pain inside. It’s up to the parents to learn to read the actions as a symptom of something deeper going on inside, rather than just correcting the behavior.

You also had a very strong will which I found frustrating when trying to get you to school on time. I saw no purpose in this at all until I met Sandra’s parents outside the hospital one day and her mom spilled out some of the things Sandra did and said. (Sandra was born with part of a leg and was an amputee) I couldn’t believe my ears! She could have been talking about you.

I do believe that those with disabilities have an inborn compensatory personality and I realized that when, at the age of 12, you went through two 20 hour surgeries. You amazed the doctor’s with your fight. In fact they nicknamed you “Trouper”. It was amazing to see you bravely fight through the pain and learn to walk again.
Brad, you continue to amaze me and I am so very proud of you. I would not change our time in “Holland”. You have taught me many new things and I am richer for it. Our adventures in this country have helped both of us welcome other newcomers who arrive and need some kind of map and someone to encourage and comfort.
To go back to your question, “What happens when one parent is deliberately absent?

I believe in most cases it is because of a feeling of helplessness, and there is nothing worse than for a parent to feel helpless when it concerns their own child. If this is not addressed, along with the guilt most parents feel, it can lead to fractures in relationship.
Sometimes one parent just cannot face it and then the other parent needs to find a support system through other family members or friends or support groups.

There is a grief that takes place as well, with all its stages: shock, denial, anger, depression, acceptance. These may come in waves and in different orders. Most couples will need to understand that they grieve differently. They need help in working this through.
The grief is about the loss of normal, the realization that all their hopes and expectations may need to be redirected to fit the new normal. This grief will be there to varying degrees all through the life of their child. It is a chronic condition and part of living in “Holland”. It’s also a time to shed any selfishness and to realign your priorities about life. It’s a time to grow in character and find out what is important in life.

Some don’t survive, some refuse counsel, some opt out. We never know until we are tested in some way how we will respond. The one thing I know is that others have walked this way before and have paved the way. Seek them out and you will find many stories of survival and rich experiences that will give you hope.

In Dad’s case it led to denial and lack of acceptance, but I believe the issue is not yours Brad, but Dad’s inability to deal with his own guilt and helplessness. It is not that you were “not enough”, but rather he believed at some level, that he was not enough, that he did not have the goods to face something beyond his control. In many ways, he is the one with the disability and sadly he missed all those years.
I also believe it is never too late to build a new relationship with your father and I pray that you will be able to do that. Come from the strong place of forgiveness and the realization that the issues are not yours, but his. He may never own them but that doesn’t mean you can’t extend love to him just the way he is.

Write or call and we can continue to talk. Hope this helps. Love, Mom

Dave  hasn’t gotten back to me yet, but he is a super busy guy, and if he has time to get back to me he will. I would really encourage people to go read his blog, specially those of you without disabilities. You would learn a lot from Dave.

For those with disabilities I would encourage you to find an online support group. I found one for Scoliosis and it has really helped me out. No matter how much my wife tries to understand what I am going through, she hasn’t been there. (not her fault, nor would I want her to go through this, she has her own issues I can’t understand.)

Parents with children with disabilities I would also encourage you to seek out support groups. You are not alone, and how you raise up your child will effect them in later life.  I’m 38 years old now and if I take a class at college I feel my head getting squeezed, literally, there is this pressure inside my head that builds and builds. I have zero problems taking training for work, or learning things on my own, but once in a school setting it comes back. The reason is my father. He pushed and pushed me about school. I could get straight A’s (And I did) but get a lower grade in one subject and he would go after that. Say I wasn’t trying hard enough. I never got any praise for my good grades. One of the things I learned from that was ‘why try?’, its not going to be good enough anyway. The other thing that he did, and where I think the pressure comes from, is when I had math questions I needed help with my father didn’t sit me down and work through it with me, he just yelled at me while working through it. He didn’t show me how to do it, he just yelled at me until I finally figured it out on my own, then he would yell some more that I knew all along and I was just wasting time. It was during those times I felt the pressure in my head.

This is something I am going to need to work through. There are some college courses I want to take and I don’t want to have to fight myself to get through them.

Its been a bit hectic here, my brother-in-law’s dog was really sick and we have been dealing with that this past week. I’ll try and post more.