She has not been anywhere with anyone else since her July hospitalization because her body has been so out of whack and unpredictable. I am super blessed to teach at her school, where her classroom shares a door with mine for this school year. "Big ups" to God on that one. She is able to have her independence and allow her teacher to care for her, but I am right there should significant problems arise.
The "only being with us" status has not been an overprotective or control thing. It has been due to the fact that it has been hard to develop a "care plan" for someone else to follow should something arise. Even the one we attempted to put together for school was ineffective when she instantly became weak, super shaky, and mottled from head to toe one day - none of which was on the plan dedicated to cyclic episodes and migraines. We were getting to a more stable place and ready to have her venture out recently and then everything went haywire last Friday, resulting in 5-6 days of migraines of varying degrees, headaches, and other issues. As a result, going into last night, my kid was an emotional mess, worried that she would be far from home and badness would happen. We armed her with all of her tools and meds, but the fear was still there. My husband I were talking through her fears with her and encouraging her to be "Bethany Brave", but I kind of think (know) we were also talking to ourselves. We had no clue if she would be fine or not, but also do not believe she should stay home due to a "what if" fear. Her daddy came up with a plan to help us all out.
When the show started at 7:30, Natalie had the comfort of knowing her daddy was parked down the street from the arena doing schoolwork, and her daddy had the comfort of knowing he was minutes away should she need him. And, you know what, the result was a fantastic night that she loved and could also be proud of. She was "Bethany Brave."
Most of the time, I am the more vocal of the Dion Duo, Maybe it's the mom thing, or the fact that I am more of an extravert, but typically I am the one who posts things, calls insurance companies, and speaks out. I think the male perspective, specifically the perspective of a father, a daddy, to a chronically ill child is powerful. Men are strong. They are fixers. But..there are some things they can't fix and that is a hard place to be in.
Below is a snapshot into Mike's experience through all of this, in his own words...
My
daughter Natalie is nine and a half. From the moment she was born I knew my
wife and I were going to be in for a long haul. She started screaming and was
full of life from the moment she was born. At the time these imagined
challenges were concerns about boys, teenage attitude, and difficulty with
friends. I also had fears that she would
Although she has always had random medical issues, this
current illness started during a run on Thanksgiving Day almost three years ago.
Natalie started throwing up and did not stop for the entire weekend. As an RN,
I saw this as one of the many issues that happen during childhood. Kids get the
flu, gastroenteritis, and a host of other things from other kids. That weekend
we took her to the emergency room to stop the throwing up. We were told that
Natalie did in fact have one of those childhood illnesses. She had strep
throat. I thought, great, bring on the
antibiotics, and let’s get on with the weekend. We were released to go home.
When we arrived home Natalie started throwing up again. I felt like a failure
as a nurse because all the things I know to do when a kid is sick were not
working. Eventually we had to take her back to the hospital for an admission to
the hospital.
To avoid being long winded, the next six months involved many different doctors with each one wanting a new test. Along the way, Natalie’s nausea never left. Around every Wednesday, Natalie would be extremely tired and sometimes take a three hour nap. When she woke up, she would still be tired and still have the nausea. After many tests and many instances of finally “finding a cause and a cure” our hopes were let down with continued nausea, constant fatigue, and a litany of doctors shaking their heads, and saying they just did not know.
By the time we checked our daughter for cancer, specifically leukemia, I almost hoped it would be cancer so we had an answer, and a possible cure. It was about this time that my daughter’s confidence, lust for life and “I can do anything” attitude started to leave. In the place of a bold, precocious child, we had a sensitive, scared, anxiety ridden little girl. Natalie worried and worries about everything. She has a nervous habit that causes her to pick her skin, when it scabs, she picks it again. Many times, she has no idea she is doing it, when you tell her to stop, she looks at her fingers, ashamed. This was the worst thing to see. There is a very real stigma in society regarding psychiatric conditions. I did not want that for my daughter.
When we saw new doctors this new anxiety was part of the health history. Unfortunately, this caused some of the more “shortsighted” doctors to write off the nausea, extreme fatigue, severe vomiting as anxiety. This is garbage. My kid did not develop anxiety and nervousness until being told for six months that we were no closer to finding out what was wrong.
It did not help that I did not understand the irrational fears and anxiety either. I would get angry at Natalie, she would start to cry and say that I “just don’t understand, don’t you realize dad, I hate this nausea. I hate being this way”. Natalie wanted to know why God was doing this to her. I had no real answer. No answer except for the usual crappy response, “one day God will let us know. I used to feel that God was a kid with a magnifying glass on an anthill. I started to think that way again. Some days, my child could not even ride in the car for fear of throwing up in the car. I just wanted my kid back. Natalie just wanted to be a kid again. The things she used to do like sleepovers, school, sports, even movies with friends did not happen anymore. If she did anything, mom had to be close by.
We saw a pediatric neurologist who asked questions but did not wait for the answers. When he did hear the answers, he dismissed them. He put Natalie on Topamax, a seizure medication that took away the nausea, but turned Natalie into a Zombie. She went from being an “A” student to a “C” student. Problem solving was non-existent. Natalie’s teachers said that she looked “zoned out” in class. We looked up the side effects of this medication when she started taking it. We knew this was a risk, but at higher doses. When we asked the neurologist about this, he dismissed the possibility outright while at the same time telling us that the “blunted” way Natalie was behaving was the new normal! We were not ok with this “new normal”, which was obviously caused by medicine side effects.
Eventually we found a doctor that was able to confirm a diagnosis for us. Natalie had Cyclic Vomiting Syndrome, a Mitochondrial disorder. The Mitochondria is the powerhouse of the cell. This is the reason we are able to do anything at all. The specialist, Dr Boles, put Natalie on a “Mito cocktail” that really helped. The nausea never left, but was very well managed. In addition he took Natalie off the Topamax. He referred to this drug as “stupidmax”. Guess what? The “new normal” as described before went away. The old Natalie started to come back. Confidence returned, Natalie’s fears subsided, and I felt we had an answer. We were so glad to have our daughter back.
Then last May, 2012, Natalie got way worse. Everything described above returned, but much, much worse. Natalie’s specialist explained that this was due to the rise in hormones and was in fact truly, “the new normal”. During the summer Natalie stayed in the hospital for nine days. We were back to where we were before we had Natalie on the “Mito cocktail”. Everything that worked for a year and a half before was no longer working. New issues came up, many of them including dysautonomia*, a dysfunction of the automatic nervous system. For the first time Natalie got nausea with a severe headache. Now the headaches did not go away either. Natalie asked me if she was going to die. I said no. What else do you say? Sometimes, it’s OK to lie to your kids. The truth is that I have no idea where this is going.
The hardest part of this illness, possibly worse than the suffering of your child, was the insurance company, Healthnet. They told us they would not cover the expense to see Dr Boles. This is the one doctor that kept Natalie OUT of the hospital for over a year!!! If anything, we saved them money by decreased visits to the ED for fluids and medications with eventual admissions to the hospital. This was despite the fact that every specialist Healthnet wanted us to see was telling us to see Dr Boles!!! In some cases we were denied after a one minute review of Natalie’s medical record that is hundreds of pages long. We know this because Healthnet sent the transcript to us. We were not supposed to see the transcript. The doctor (medical director at Healthnet) that denied us was an OBGYN. I am pretty sure she has no clue what Natalie’s condition is, then again, she does not care.
I have some sadness in me these days. My daughter has been cheated out of a normal life. I even prayed to God to heal Natalie and give the illness to me. He did not hear me. I sort of thought that if you selflessly asked for something, you could get it. I have a child like faith. Only a child would believe such a thing. My son suffers because my daughter’s issues consume our lives. We are getting better about making plenty of time for him. My marriage suffers because my daughter’s issues consume our lives. I could not tell you the last time my wife and I have had a date. It would be cool if the damn insurance company would just approve her specialist. My daughter may never be able to be on her own. This has changed her life. It has changed our lives.
The point of writing this is not for sympathy. It’s to say too other families dealing with chronic illness that I sort of get their lives now. I am slowly learning to appreciate where I am because it could absolutely get worse. Something is happening to our kids in this country. Autism, Mitochondrial disorders, ADHD, ADD. I sense something is affecting the genetic makeup of our children. I could not tell you if it is the water, genetically altered food, chemicals, pesticides, or all of these?
As I write this, my daughter is watching the “fab five” show why they won the gold in the Olympics. My daughter loved gymnastics, but is now too completely fatigued to take part anymore. Natalie was afraid to go tonight. She started crying, and did not want to get sick at the performance. Her mom and I made her go. Don’t give into the fear. “Dad, will I be ok?" “Yeah, you be will fine,” I answer back. Sometimes it’s OK to lie to your kids.
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