nothing to hope for

At this point in time, I really have nothing to hope for.  As we get ready to go and take a functional MRI test, I don’t know, what to even want to come from it.

Do I hope for her AVM to be in a location that isn’t on a critical center so she can have brain surgery to completely eradicate it?  Do I hope for a huge scar, time spent in ICU, the restrictions and possible things that could go wrong?  Is this what I hope for?

Do I hope for her AVM to be in a location that IS on a critical center so she can’t have brain surgery and must do the radiation therapy?  Putting her through radiation that may or may not work and has only an 80% chance of eradicating it.  Of course the side effects and all the possible things t hat could go wrong?  Is that what I hope for?

It is a scary time when you really have nothing to hope for and just go with the flow.  My family hopes for brain surgery, I don’t hope for anything other than there to be a huge mistake and she really doesn’t have a problem.  Unfortunately, that theory has been debunked many times, so I have nothing to hope for.

forever the failure

You have tried your best to raise your child to be the best they can be.  You held them close, kissed away their tears, were strong when they were weak.  But you cannot heal them.  Chronically ill children, especially those with an incurable disease, are forever sick.

Knowing that there is nothing you can do but put faith in doctors who simply have no idea what they are doing and are guessing at treatment, you feel like a failure.  You allow your child to be subjected to all sorts of drugs you would never in a million years have thought you would put into your child.

Drugs that make their face round, drugs that cause cancer.  Drugs that make them sick.  Drugs that are swallowed, inserted, injected or infused.  Drugs that taste bad, that hurt and cause embarrassment.  Drugs that burn like fire, drugs that hurt so badly that even you cry when you give it to them.

Then there are the surgeries.  Surgeries to fix tears, narrows, blockages, malformations, or just to remove a body part that isn’t working anymore.  After the surgeries you go home with your child in pain from surgery, only to return to the state before, never going into remission, never truly healed, never finding relief.

You help your child with homework, school work, struggle to help them learn a language you’ve never learned.  You watch as they miss school, fade away from friends’ mind.  You watch as everything that is important to your child disappears and your child cries themselves to sleep, not because of the pain or the illness, but because they mourn the loss of a normal childhood.

You change doctors, hospitals, medications, to no avail.  Your child never gets better, always has problems and always will.  You then realize you will always be a failure.  You could not help your child.  You could not sacrifice something in order to make them better.  No amount of money will fix them.  They are forever ill, and you forever the failure.

Only you’re not.

invisible disease

Invisible disease? I can see it plain as day. Why can’t anyone else?
Up until a few years ago I had a completely normal life. A wonderful husband, four beautiful and healthy children, local family. Life was good. Of course we had our problems, like other families, but overall life was good.
Then came the day when my youngest became sick. The normally healthy child who a few years prior threw off pneumonia pretty easily. She rarely became sick other than a few sniffles. All the children were relatively healthy. Until that day.

I still remember that day. July 2, 2013. Yes, I remember the date and I am not one for dates. She started having symptoms of Crohn’s Disease, a form of Inflammatory Bowel Disease. July 1st she was perfectly healthy, July 2nd she was in the hospital.
I watched my youngest child go through various transformations. I’m not going to discuss the horrible diseases that she has been plagued with, instead I will tell you about her transformations.

When all of this started, my little teenager was considered overweight with a BMI of 26.4. Sure she was a bit overweight, but who cared, really? She was going through puberty and many girls gained weight during that time. In January 2014, she dropped to underweight at a BMI of 17.0. Just to give you a visual, she was 5’1” and 90lbs. Generally those with anorexia have a BMI that is below 17.5. By October 2014 she dropped another 20lbs and had a BMI of 13.2 and looked like a skeleton covered tightly with skin. She almost died 3 times during that time.

During this time, I watched her long, thick, straight hair thin to almost balding. She would break hair ties putting her hair up and now her hair wasn’t thick enough to be considered pencil thick. I watched it grow back slowly, thin, wispy and in tight little curls. Such a complete change. I watched it go from a strawberry blond to almost silver at it’s worst and then back to a light ash brown.

On October 2, 2014 I waited while she was in a life saving surgery. From there, I saw the change in her body. Her sunken belly that was unmarred by anything went to having several scars and an ostomy. An ostomy that was supposed to be temporary. Her blemish free skin is now marred with plenty of scars from surgeries and picc lines, as well as marks all over her from various IVs and blood draws. Stretch marks now cover odd places due to the rapid weight loss.

For a year and a half I watched her body return to health as scars faded, though didn’t disappear. I watched her hair thicken a loose curly that she maintains in unmanageable most days. I watched health return and her starved body become plump again. After the nasty scare of her weight loss, I don’t mind so much that she is now considered overweight. She is now at a BMI of 29.3. I don’t mind and we work on healthy choices and exercise now that things aren’t so dire.

Then in June 2017, we found out that she has another problem, this time with her brain. She will be undergoing brain surgery in July 2017. I will once again watch how a disease ravishes her mind and body. I will dress and care of her wounds, this time on her face as they enter her brain to save her life. During her senior year of high school. Luckily we were able to get her yearbook picture before surgery.

These are invisible diseases. To me, they are as visible as the smile or frown on her face. To others, they are completely invisible and are people are incapable of imagining any of it.

true doctors

There are doctors who prescribe medication and then there are doctors who treat a patient.  With mutual respect much more can get done than with someone who simply throws medication about hoping it will stick.

Today was a day that everyone has been dreading.  The talk with the doctor about stopping medication. My daughter has been feeling worse on the medications they tried and none of them have helped at all. 

Being that she is getting older, she wants to be able to make medical decisions for herself.  I agree, and I take her opinions into consideration when we work on treatment for her various problems.  I don’t always agree with her opinions, but I allow her to have her say and we discuss it like adults.  I insist that she is educated on the consequences of her opinions and most of the time when we differ, it is because she made a decision with her emotions and not her mind.

She is frustrated and angry about having to go every month and spend a day at the hospital in order to receive treatment that doesn’t work.  Who wouldn’t be?  Today was the day to discuss it with the doctor.  I have previously brought it up with him, however, he wanted to hear it from her.

Today, a conversation between doctor and patient happened.  I was not involved at all, really.  I don’t mind because I told her if the doctor agreed, I was okay with it, but she would have to present it to him herself.  I helped be her sounding board and played devil’s advocate to get her ready to have the first real adult conversation of her life.

She did well.  It was a conversation of mutual respect.  He gave her the courtesy of not only listening attentively, but asking questions without sounding judgmental.  They talked it out, and came to the conclusion that they were going to try it her way.  Give her a break until at least after her brain surgery.

I watched a doctor who has been treating her for three years tear up about how bad things are.  He literally teared up about how she had to have brain surgery.  He had to clear his throat before turning and talking to me.  He readily admits he doesn’t have all the answers, but continues to search for them.

Seeing the level of trust that my daughter has for him, the respect they share and the compassion he has, I have to say that he is one of the best doctors out there.  A doctor doesn’t treat a disease.  A doctor treats a patient, all of them, including their fears and frustrations.

too many illnesses

I am a mom of a very sick child.  You wouldn’t know it really, because she hides it pretty well but she is always coming up with some potentially lethal problem or disease.  It’s funny how people you thought cared just turn it into another thing.  Apparently, we are only allowed to have one serious disease our entire life.

Four years ago,  my daughter was diagnosed with a disease I had never heard of and ended up very sick for a very long time.  The disease is incurable and will always plague her life.

Two years ago, she had yet another problem, and she was not able to breathe.  Pretty important thing to be able to do, and once again this problem got so bad that it was quickly becoming life threatening.  We had no cause and no cure.  Luckily, the situation went away (somewhat) and she is healthier for it.

Now, she has a problem with her brain that is requiring surgery.  Brain surgery on my child.  How frightening is that?  Terrifying that’s how frightening.  All the things that can go wrong and all the things that could happen run through my brain.

Apparently, you aren’t allowed to have this many problems that could potentially end your life.  Friends, family and even co-workers respond in the same way.  You’ll get through this, after all, she got through the rest of it.  As if somehow, that makes it all better.  Not the heartfelt caring that we used to get.  Not the love and affection from before.  It’s old news.  Your kid might die.  That sucks.  Move on with my life now.

Yes, before you mention it, I see a pattern, every 2 years.  Every 2 years we get so scared that we might lose our beautiful youngest child that I fear for the future.  Why does it happen to her?  Why is it like that?  I have no answers.