Living with Cerebral Palsy

Have you ever asked yourself why some people have babies? I do. In the brief time I was a teacher, I saw students that were obviously raising themselves. One boy told me that both of his parents worked a lot of hours. He had the “things” he wanted, and could pretty much do his own thing.

This young man said that he probably saw his parents about 10 minutes a week. They worked shifts. But, he was okay. He did his own laundry, and his folks left him money on the table to order pizzas or go to McDonalds.

So, why do people have babies?

My ex-husband is a good example. It was no secret that his parents “had” to get married. He then has a sister a couple of years his junior, and a brother that his 10 years younger. His mom told me that she wanted another baby, his dad didn’t, so she “tricked” him.

So, why do people have babies?

A couple of years ago, my father-in-law spewed 10 years of resentment toward me, on the day my daughter left for college. He had been angry that I would not let him take them on a 3 week vacation when the kids were only 3 and 8. After all, between him and his girlfriend of 30 years, they had raised 7 kids.

First of all, I don’t know any mom that would let her kids go with the ex’s father for 3 weeks, especially when the kids only saw them 3-4 days out of each year. But, although I didn’t bring it up, I don’t think simply being a parent means you have raised kids.

While growing up, my ex-husband’s parents always had 3-4 jobs between them. The kids were looked after by someone else most of the time. When they got older, they pretty much did whatever. Living in Hawaii, he admitted often going swimming in a dangerous place that was forbidden by his parents. If his mom had known . . .

On his last visit, my kid’s grandfather talked to my son about getting a college education, so he could buy a big house, and show his dad how successful he was, despite growing up without a father. What?!

So, why do some people have babies?

This week, I have been corresponding with a reader who has CP and has a baby. In this respect, we are definitely similar. We both LOVE being moms and, at one time, we both thought we might never have the opportunity.

But, why did we go through the difficult pregnancies and being sick all the time, just to have a baby?

Every year, my father-in-law would mention how great it was that I had children to help me out. At first I thought it was a compliment, in conjunction with what a good mother I was. But, since he blew off steam, I have often wondered if he thought I had kids just so they could take care of me. I know he butted into our business, when I was pregnant and didn’t believe I could care for a baby. I knew he didn’t give me credit for thinking how I would do things BEFORE getting pregnant. But, God forbid!

So, why did I have babies?

The answer is simple. I have a GREAT mom, and I wanted to be one two.

I got my best baby doll when I was about 3. I had to carry her around the arm or the hair, when I walked on crutches. But, I LOVED that doll. When I was about 12, my mom gently suggested that I was getting too old to play house. She also mentioned a very poor family in our church who’s kids would really appreciate my Barbie collection. I gave my barbies away; but, I still have that baby doll.

My mom had to put a new cloth body on her and she is minus most of her hair; but, she sits at the top of my closet.

I had kids because I wanted a family more than anything in this life. I have made my mistakes in parenting, I have shed many tears doubting myself; but, I have also had the pleasure of seeing them grow into wonderful people. Despite my faults, both of my children know that there is nothing more precious to me in this life than them. I love them so very dearly.

And, I did not have them so that they could take care of me. In fact, I have made it abundantly clear that I want them to be happy and successful in life. No, I don’t mean have lots of money either. I want them to have a good life and pursue their dreams. After all, I got to have my dream – THEM.

SO . . .

Whether you have CP or are able bodied, think twice before having babies. If you are just going to be at work all the time, get a kitten for companionship. They don’t need to be let out, and they are self-sufficient as long as you provide food and water.

If you want someone who will love you unconditionally and watch out for you, when you get older, consider a puppy. They won’t care if you are disabled, and you might be able to get one that is trained to provide you with assistance.

There are a lot of ways to get proper care as a disabled adult that are a lot cheaper and easier than raising a child.

But, if you KNOW that children are one of the most precious gifts that God gives to people in this life, and you KNOW that you are going to raise your children as such, then you probably want a family for the right reasons. But, speaking from personal experience, there will come a time when you KNOW that it’s time for them to shine, and not be held back by your disability or personal desires.

Because so many adults and children out there have cerebral palsy, it can be hard to spot them. The condition has many symptoms and no two who have it are alike. To help give you a better idea of what CP is, we have gathered some of the top myths and misconceptions about it below:

1 It is not retardation – Cerebral palsy is many things, but it is not mental retardation in the medical sense. In fact, there are many cases where CP has no effect on an individual’s mental capacity. There is even a type of CP, dyskinetic cerebral palsy, where individuals have their full mental faculties. However, there are forms of CP that do impair development.

2 It is not a birth defect – Although there are many birth defects that can mimic cerebral palsy, it is not considered a birth defect. It is a brain injury that can often be sustained during the birthing process. It can also be caused by later injury in the baby’s life.

3 Not hereditary – Someone who has cerebral palsy is no more likely to have a child with it than anyone else. Likewise, those who have no family history of CP are just as likely as anyone else to have a child with CP.

4 It isn’t treatable – As with many forms of mental conditions, early detection is key. Knowing the signs of cerebral palsy can help parents and doctors formulate a plan to ensure the child lives as normal a life as possible.

5 Those who have it can’t walk – Although there are many with CP who are confined to a wheelchair, there are many who aren’t. Again early detection is key, and those with CP who get the proper treatment can walk and run just like anyone else.

6 People with CP aren’t sexual – As proven in Pharmacy Degrees, this blog entry, people with CP are just as sexual as anyone else. In fact, The blogger shares a lot of misconceptions about the sexuality of those with cerebral palsy.

7 It is extremely rare – This depends on what your definition of “rare” is. New data shows that one in 278 children have cerebral palsy. This is compared to the approximately one in 150 children who have autism.

8 Does anyone famous have it? – If you have ever seen television series such as “The Facts of Life” or “Deadwood,” you have seen Geri Jewell. She is a comedian and actress who has CP and is a pioneer for others who have it.

9 No intellectuals have it – There are many authors and activists who have CP including Anne McDonald of Australia and Chris Nolan. They were both educated and have professional lives just like anyone else.

10 No, seriously does anyone smart have it? – If Stephen Hawking isn’t smart enough for you, no one is. Often dubbed “the world’s smartest man,” he has motor neuron diseases and ALS, which has symptoms very similar to cerebral palsy. He is also confined to a wheelchair but can speak like anyone else through a computer.

Paige Dagmar is a student and also writes for Pharmacy Degrees which helps students find the right pharmacy degree.

Yesterday, my daughter and I discussed how everyone has there own set of family traditions. For example, in my family, if you are about to take a trip in the car, we say “drive safe and sanitary”. (I said it for years, without even knowing why.) It seems that my great-grandfather said it once and my ancestors thought it was funny.

You may have inherited certain holiday traditions or recipes. Every year, without fail, certain foods show up at family gatherings.

We also inherit some things that aren’t tasty or funny. Fourteen years ago, I was diagnosed with crohns disease. I had never heard of it before. In simple terms, the doctor told me that it was an auto-immune disease where your own body treats your digestive system as if it were a virus that needed to be eradicated. From the point where food and drink enter the body through to the exit point, crohns can cause big problems. Ten years ago, I had eight centimeters of my colon removed because scar tissue was creating an impasse.

When I was first diagnosed, I had no idea what I was up against. However, I soon learned that a lot of my family members had digestive issues. It was just my luck that I got one of the worse-case-scenario digestive diseases.

Since I already had cerebral palsy and other health issues, I thought it was very unfair that I should be burdened with another life-long health issue. But, what was really unfair was when my older sister was definitively diagnosed, last year, with crohns as well. (Between that and an infection that the doctors thought she might have caught from one of her patients -she is a nurse- I think we almost lost her last year)

Unfortunately, one of the problems created by crohns and cerebral palsy is unhealthy bones. We all know the adage, “if you don’t use it, you lose it.” On top of that, because of the very unpleasant side effects, I and my sister cannot drink milk, which is high in vitamin D and contributes to bone health.

Today, on my sister’s blog, Only the Manager, she found out some more information regarding the value of vitamin “D”. Even though you probably don’t have a digestive disorder, anyone with CP will also benefit from what she discovered:

Today’s Lesson – Vitamin D
A few weeks ago I went in for my yearly physical. Instead of my general practitioner, this year I saw a nurse practitioner that I know from church. I’m glad I did! Besides the usual labs to check cholesterol, thyroid and such, she asked if she could check my Vitamin D levels. I saw no harm in that. I didn’t expect there to be any problem, though.

I was wrong! It turns out that I am low in Vitamin D. When I got that phone call I went online to refresh my memory on what I knew about Vitamin D. I found a lot of new information on Vitamin D, including a lot of articles suggesting that daily requirements may be much more than once believed. My friend put me on a recovery treatment of some pretty high doses of Vitamin D for 7 days of each of the next 5 months, with moderately high doses on the other days of those 5 months. Of course I checked on these doses at reputable sites online to be sure this was acceptable treatment. Because Vitamin D is fat soluble, there is danger in overdosing. The treatment she put me on is called shock treatment, but it is considered appropriate for my levels.

I was surprised to learn that Crohn’s Disease is a risk factor for having low Vitamin D levels. That could explain my situation, of course. I was also surprised to learn that low Vitamin D levels are very, very common for people who live in the colder regions. It makes sense. Sunshine is one requirement for producing your own Vitamin D. When it is cold, even if we do go outside, we cover up most of our skin.

Most of us know that Vitamin D helps us build strong bones but I did not know that it plays a role in our immune system. Low levels are also associated with some cancers, irritability, depression, autoimmune diseases, high blood pressure, fatigue and other disorders. My little internet research was quite enlightening! If you want to learn more I’d suggest sites such as Mayo Clinic or Center for Disease Control.

I am telling you all this because yesterday I felt more energetic than I have in about 18 months! Awhile back I’d asked Mike if he remembered the old me, the woman who flitted around the house doing stuff all the time. Yesterday, I saw that woman again! Maybe it was a just a good day, or maybe it was that I am catching up on Vitamin D. At any rate, since I learned this is a common issue, I thought I’d just share a little lesson on Vitamin D today.

Thanks for coming to class!

You don’t have to apologize for being disabled, anymore than a person needs to ask forgiveness for the color of his/her eyes or hair. You are the way you are, just like anyone else.

For Example:

It started out innocently enough. When I was first married, my husband offered to do the grocery shopping. It would be easier. Since I had to climb 30 stairs on my crutches, it wasn’t like I could do it by myself anyway. It just made sense.

Without realizing it, he was doing more and more for me, supposedly to make it easier. But, he was also resenting me at the same time. When we moved to the first floor of our apartment building, to make life bearable for me, I knew he lamented giving up the 3rd floor view.

Pretty soon, I was apologizing for EVERYTHING! He also became more critical and demanding. Since there was so much that I couldn’t do, what I could do was expected to be perfect.

Clueless

I didn’t recognize this as a form of mental and emotional abuse until years later. I just began apologizing for EVERYTHING and doing everything/putting up with anything, just to try and make him happy.

It got to the point that he was constantly reminding me of the things I couldn’t do and telling me that I was a “waste of human space”. The sad part is, I began to believe him. Essentially, I was apologizing for my existence. If he had to put up with living with a disabled wife, then I needed to apologize for making his life more difficult!

WRONG!

When I finally came home with my kids, I drove my friends and family crazy. I was always apologizing for everything, even the things for which I had no control. When I went back to college, even a couple of professors noted that I was too apologetic.

Even though I am now “retired”, I am still glad I went to college, because I got the “old me” back. My self-esteem rose 100% when I realized how much I liked school, and I was succeeding. I had my confidence back.

TODAY . . .

I still sometimes slip up and apologize for being too slow or something, instead of just thanking my friends for a ride, a wonderful lunch, or whatever.

But, for the most part, I think I am done apologizing for something for which I have no control. In fact, I have FINALLY decided to embrace my disabilities as well as my abilities.

I am very grateful for my adjustable hospital bed and my powered wheelchair. They have really improved my quality of life. But, there was a time I would have done almost anything to avoid such disability aids.

If I find something that will make my life easier, and I can afford it, I won’t hesitate to make a purchase. If I am too tired or not feeling good, I give myself permission to stay home, go to bed early, do only the necessary chores, etc.

My Encouragement to You!

You have nothing to apologize for either. You are not Living with Cerebral Palsy by choice. You don’t have to be sorry if you can’t walk fast or need to use a wheelchair to go mall shopping. It is okay to accept who you are, limitations and all.

If anyone gives you the impression that you need to ask their pardon, list a few unchangeable characteristics they have that need some apology first. Real loved ones care for you, not your abilities or lack thereof. They might make accommodations for which you can be thankful. But. . .

As far as CP goes, no apologies necessary!

No, I am not talking about the Casey Anthony trial. I got the test results today.

Before I give them to you, please remember that even with CP every case is different. I don’t want to give you the impression that this is what is in store for you, when you are 50+. But, it is something to think about, I guess.

1. I don’t have osteoporosis, at least from the hips up. They couldn’t scan my legs because of the metal plates. (This surprised me and my doctor, especially since that one hip is permanently dislocated.)

2. The tendons in my arm are still intact, but worn.

3. I have arthritis in both shoulders, as well as the dislocated hip.

4. My bones are degenerating faster than expected for someone my age. This may be due to CP; but, it also may be an hereditary issue. The doc said I may have received a double whammy on that one.

5. I do not need surgery on my arm or hip, unless the pain becomes intolerable. If I was still walking, I would need a hip replacement. But, surgery is now dependent on pain control. My shoulder will probably be the3 first to become extremely painful. But, it would be a clean-out, not a replacement. I would just have to spend a couple extra days in the hospital, because of my need to use my arm.

Remember, this is my experience. It doesn’t mean it will be yours. However, I also know that it is a very good thing I am in therapy, in the effort to preserve what I do have.

BEST OF LUCK TO US ALL!