Saturday, January 10, 2015
Posted by Hillary at 11:51 PM
Saturday, February 9, 2013
This is maybe the most honest, and possibly longest post, I may ever write. And also my last, at least for a while. Let me explain.
Initially, I just disabled the blog, but after some thought, I feel like I owe y'all an explanation. Because y'all have become part of our extended family.
In early January, we finally got the results of Eli's genetic tests. I was kind of amazed at how well I held together during the 3 month wait, and for the first time in my life, I understood about God's strength. Before, I always tried to intellectualize it. How can one gather strength from an unseen force? But, when I needed it most, there it was to get me through. There is no way I could have had that strength on my own. I am just not that strong. But, God saw me through.
The day of the appointment was very stressful. We spent the weekend at Phillip's mom's house in Covington and headed across the lake in the early afternoon. We were a bit early, and the doctor was a bit late. The last few minutes of the wait were the worst, and I had to leave the room to throw up. I have never in my life been so nervous.
E was having a not so great day. Which, as horrible as it sounds, was a good thing. On his good days, he is very close to a typical 8 year old little boy. And when we see doctors on those days, I always feel like they think I'm crazy when I tell them how tired he gets. How he hurts. And how I KNOW something is wrong with my son. It always makes me think they think I WANT something to be wrong. Which, of course, is crazy. I would give my life for my son to have a normal one. But, a mama knows. And I knew.
And as crazy as it sounds, I was equally afraid of being told once again they weren't sure what the problem is as I was being told my son would die. No answer is really not a good answer, despite what people would have you think. Because again, a mama knows.
Over the 3 month wait, E got weaker. He missed 21.5 days of school last semester. He would go a day or two and either get sick or be so worn out that he had to stay home and rest. I would make it through a day, but when I laid my head down at night, I had visions of my son's funeral. It literally sucked the breath out of me, and many nights, I just gave up on sleep. Because I'd rather not sleep than have panic attacks and thoughts of his death.
Anyway, the doctor and intern came in and gave us the news. E's tests suggest mitochondrial disease (there is no 100% diagnostic test for mito). But all of the always terminal varieties were ruled out. I cried. Thank you, GOD! We finally have an answer, and it's good one. Or so I thought. We left NOLA, and my head was spinning.
E was started on his first supplement. Carnitine, which was low in his urine. And cornstarch in juice at night to give his body a constant stream of glucose over night. It's important that E have a constant caloric intake to keep his body from going into catabolism and tearing down his muscles for energy. (Because his mitochondria don't make energy like they should). We had more blood work the next day so we stayed another night in Covington, then headed back home.
The cornstarch was a miracle almost immediately. And continues to be. E is sleeping well for the first time in his life. He has been on sleeping pills since he was 2 years old. But as the years went on, they became less effective. He woke up in pain every morning. Mostly his ribs ("wibs") and his legs. The cornstarch seemed to take most of that away. The dark circles under his eyes have gotten better. He has not complained of pain in the mornings since we started. We have actually had some good mornings since starting cornstarch. Not every morning, but definitely more than we ever had before. And he stopped saying "I don't feel good" every five minutes (no joke).
But, the carnitine caused severe diarrhea. Not to be gross, but so severe it was spilling out of his diapers all over the floor. And it happened overnight, too. So, he was waking up in a puddle of diarrhea. Horrible. And then the projectile vomiting started. It was so bad, he was on my bathroom floor and looked up at me and said, "Mama, am I going to die?" Talk about the absolute worst thing you could hear from your baby. He missed another two weeks of school as we adjusted and finally just gave up on the carnitine (for now at least). The vomiting stopped and the diarrhea slowly cleared.
He started Uniquinol, high dose CoQ10. And his energy spiked! He's actually had days since starting it where he didn't have to lie down and rest. All day! Not every day. Which is the hallmark of this disease. Waxing and waning. He was finally able to return to school.
But, he was coming home exhausted and in pain. Severe pain. Pain so bad he clawed at his legs and begged me to help him. But, I couldn't. He had to ride it out. And my heart broke. Just broke it into a million pieces to see him hurt like that. I got online to read more about pain and mito. I found a blog by an adult woman with mito who described her pain. In it she said something to the effect of "The only consolation I have is that I am the one in pain. Because if I had to see my child hurt like this, it would kill me". Again, just heartbroken.
The doctor started E on Cytotine. I read about how it works. It replaces some missing chemical in his body. That's pretty much the only thing I can tell you. But, it seems to be working! He has not had a lot of pain since starting it. And bonus: it's a liquid that actually tastes good. So good, in fact, he can't wait for his "orange medicine" in the afternoons. We still have a long way to go to get the exact mix of supplements ("the cocktail") for him, but we are seeing positive changes, and I am grateful for that.
I quit school last semester. I couldn't keep up or focus with everything we were going through. And it's one of those things where, when you're past it, you can see why things happened the way they did. God knew what was coming. I would've had to quit this semester anyway, failing or not. E needs me, and that will always come first.
So, now he goes to school half days. The hope is that he will get stronger with the extra rest time so maybe one day he can return to full time. I walk to the school at 11:45 everyday with the wheelchair. If its a good day, he walks home with me. If its a bad day, he rides. So far, it seems to be helping. He seems to have a little more energy. It's a new change though, so we will play it by ear.
I have connected with other "mito moms" which is both helpful and terrifying. Almost daily, there are stories of children being hospitalized or dying. I kind of keep my distance. I need info, but I can't think of losing my son. And despite him having the "good" mito, I have learned that losing him to this disease is a possibility. It can change minute to minute. He could live a relatively normal life span with treatment, or he could go into system failure tomorrow and die. Obviously, I can't focus on that. But so many of the other moms do that I have to just stay away from them. Because honestly, if I lost my son, somebody just needs to dig two holes. I don't think I could live through a day without him. Yes, I know. I have two other children who need me. And I love them every bit as much as I love Eli. But, I don't think I could breathe without one of my children. God bless the people that have to face that. I don't think I could. So, most mito moms are kept at two arms length.
Beyond the death talk, I see little hope. When I asked what they do with school (prior to the decision to half day) I got resounding home school advice. I'm not anti home school per se. But, I am not a teacher. And I want my son to have a life outside of me. Even if just for a little while. Your initial reaction is to put him in a bubble and protect him as much as possible. But what kind of life is that? I want my son to have both quantity AND quality of life. And, I'm pretty awesome, but I'm not an 8 year old boy. He needs time to be a regular little boy. He needs to laugh and talk about Batman and be silly with other little boys. Of course, I'm not willing to flat out risk his health to do so, and if the time comes where home school is our best or only option, then we'll do it. But, right now, we're not there. I hope we never are. And right now, he needs time away from me. Time to be a kid. He not only needs it, he deserves it.
Of course, I have some great moms who are as positive as possible and beyond helpful. And those have become my go to moms. I know we will have bad days. Days with pain and heartbreak. Days I can't poke my head up from the avalanche of sorrow. But, I choose to focus on the good days and to surround myself with those that choose the same. The main mother that has been there for me (thank you, you know who you are) is a friend from long ago. We just didn't know at the time she lived here that we were dealing with the same thing. She has been beyond helpful. And her mentality is much like mine. I don't do negative for negative sake or blindly positive for positive sake. I'm a realist. And so is she. She has not sugar coated (which I sincerely appreciate) but she also doesn't dwell. I don't like dwellers. And she has lifted me up more from 800 miles away than anyone else. I am so grateful for her.
More than anything, I am tired. I have spent years doing advocacy work. I have loved it. I have needed it. And I have met some wonderful people and been afforded the opportunity to do some pretty cool things. But, I'm tired. And right now, I don't have that to give. I don't have the energy to delve into a new world, meet new people, and pick up a new placard. I just don't. Another reason I am grateful for my old friend who lives this as well. I don't have to rehash our past or force a bond over this disease. She is my friend beyond a diagnosis. And that is what I need.
Because this situation has been much like a divorce. I am learning again who my true friends are. They are the ones who call me to check on Eli (and to check on me!). And they make me laugh and talk about something more than E's condition. And perhaps that is the greatest lesson I have learned from this. I NEED to have something in my life to focus on other than E's condition. For the past few years, I have neglected myself and focused solely on autism. And I just can't anymore. Although this is horrible to type out and is probably the most selfish thing to think, I need to have an identity as myself. Because, God forbid, if the day comes when we don't have E, my only hope of survival and being a mother to Jonah and Bitsey is to have a leg to stand on as something other than Eli's crusader. Not that that is a role I will ever give up, of course. That is as much a part of me as my brown eyes. I will fight for my son until the day I die. But, it's time for me to be a mama warrior for my children AND just Hills sometimes. The best way I can be there for my children is to also be there for myself. To find my happiness in spite of this disease.
So, this is my last post. At least for a while. One other thing I don't have in me right now is to chronicle our journey anymore. It's not like I can ignore it, but I won't give it too much power over our life and our happiness. And writing about it makes it central. I believe as the days go by and we learn more and adjust, this too will become just a part of our life. Not the entirety of it.
Right now, my boy is doing well. His energy is increasing, and he is hurting less. I could write down all of the things that are still wrong or every single fear I have. But, words are powerful. I prefer to just tell you he is doing well, and we are very hopeful.
We are hoping to move to Covington sometime in the future to be closer to Phillip's family and Eli's doctors. And in the meantime, I am caring for my babies as always, and I'm writing. Fiction. Because that's fun and an escape for me. I have been told time and time again that I should write a book about our life. But, I don't see that happening. A good story has a distinct beginning, middle, and end. I am hopeful the only ending here will be when I take my last breath. And then someone else can feel free to write it. As hard as this is, I just prefer to live it.
Posted by Hillary at 11:33 AM
Tuesday, December 18, 2012
I don't want to talk about Sandy Hook. I don't want to think about it. I am weak in that way. I can't even watch Law and Order when it involves a child being hurt. But, what happened last Friday was not fiction. It seems like it SHOULD be. It seems like something that should only be conjured up in the imagination of Hollywood writers. But, unbelievably, its not. It is very, very real. And if I think about those sweet babies and their poor mothers and fathers, I will not be able to stop the tears. I resolved early on not to subscribe to the 24 hour news cycle on this one. I just can't.
But, over the weekend, I checked in here and there. I, like everyone else in our country, wanted to know the answer to the one question none of us will ever know: WHY? What could possibly motivate someone to do something so evil? In a very different way, I am well acquainted with the cosmic why. I have asked more times than I can count within my own family life. Why were my sons chosen to have autism? Why my family? Why must they struggle so much? What is the REASON for all of this? And, I know from my experience, that the answer will never come in this lifetime. But, I am a human being, and I am incapable of not asking why when something like this happens. I look, like everyone else, for some reason.
Late Friday evening, I checked back into the news to see if any new details had come to light. And what I heard literally rocked me. The shooter is "reported" to have Asperger's syndrome. Instantly, I knew the repercussions of those words. I felt my heart drop like I was riding some very unfun, terrifying version of Space Mountain. I knew this would spawn waves of hate for people with autism. Including my sons. Never in a million years did I think the tragic events in CT would find their way into my living room in Louisiana. But, they did, and I have been reeling ever since.
Almost immediately, I began getting calls and messages from acquaintances who do not have experience with autism questioning autism as a cause of violence. These came in the form of genuine questions, not judgments. I felt comfortable after speaking with each person that they understood autism a bit more. That they wouldn't shuffle their own children away from my boys if we were to see them out somewhere. But, then, I started reading comments on various sites on the internet. People calling for children with autism to be locked up and blaming autism parents for not doing a better job. The anger was immediate.
No one, except those who have a child with autism, have even an iota of a clue about what our life has been like. Many will never know the pain of watching their child struggle to speak and becoming inconsolable when he can't. They will never know how we worry when we drop our kids off at school because violence against our kids is not at all uncommon. How when we see the PTA mom drop Little Johnny at the door and head off to Zumba without a second thought, we sometimes feel a pang of jealousy and wonder what it must be like to be so carefree. Or how it feels when your child is passed over for an invitation to yet another birthday party.
They will never know what its like to sit in an IEP meeting or doctor's office and have people tell you all of the things your child can't do. Or the gratitude you feel when they finally can. They don't know that when our FB friends with young children complain about changing diapers, we bitterly think, "Try doing it for 8 years." Or how even when you're curled up with your little guy watching the same episode of Max and Ruby for the 900th time, you are acutely aware that no other 2nd graders still watch that show. And it doesn't look like yours will be ready to move on for a while. If ever. They don't know how you have taken your kids to thousands of hours of therapy and lost almost everything you've ever worked for to do so. That your little one can't even go to the grocery store without wearing noise canceling headphones because everyday sounds hurt his ears. That he can't touch styrofoam, and when the waitress brings him the styrofoam kid cup with the lid, he just patiently sits there staring at it until you ask her to bring him a different cup so he can drink. Or how, even though he speaks, he doesn't communicate that much and figuring out what is going on with him is a constant guessing game. They don't know that you had to pull your child out of school in 2nd grade because the bullying (by an ignorant, insufferable, unwielding teacher, no less) has brought him to the brink of suicide. At 8 years old. Or how it feels to have the neurologist tell you that you can either pull him out of that toxic environment and give the antidepressants a chance to work, or she will hospitalize him.
They will never know the very deep pain you feel when your child punches himself (never another person) when the school fails to comply with the IEP and he is confused and frustrated. How you would prefer to be punched yourself than ever see your child hurt himself. They will never know how you feel isolated from people you love because even though they love and accept your children, they still don't know much more about your life than anyone else. They definitely don't know about scrubbing diarrhea off the floors and walls when his intestinal issues act up yet again. Or how you cry the whole time, asking God to make it stop. And they will never, ever know that every night when you go to bed, you beg God to not let you die for a long, long time because you don't know who will ever take care of your child.
This is my reality. I do not live in fear of my children. But, I do fear for them.
But, for every negative, horrible thing we have endured, there has been at least one good thing that kept us trudging on. Six years since autism entered our life, and I live in awe of how far my little family has come. And when I hear someone make a disparaging remark about children with autism or their parents, its like a slap in the face for every day my family has had to fight through. We deserve more.
Monday morning, I was contacted by Michelle Cottle with Newsweek who wanted my reaction to the autism link to the CT shooter. My reaction is anger. (And it shows. I was fussed at by several people for being quoted as saying I want to punch ignorant people in the face. But, 1) I am always me and make no apologies for it. 2) I have never actually punched anyone in my life, and I can't imagine I ever will. And 3) hyperbole, people. Geez). But, I am angry that the national TV news media has run with this angle of the story and even had "experts" on who perpetuate ignorant stereotypes. I know many, many families living with autism. I know none who have a child capable of plotting and carrying out a mass murder.
I am an autism mother, but unlike the other blog floating around, I am NOT Adam Lanza's mother. My boys are autistic, yes. But, they are so much more than that. They are kind, conscientious, loving, funny, and the absolute strongest people I've ever known. They are completely incapable of purposely hurting another person. Yes, they have had outbursts. But, they are reactionary to some outside frustration. An inability to communicate their wants or needs. Not feeling understood or accepted. Stress at school. And the recipient of their momentary anger is always themselves.
They are not evil. In fact, they are better than most people. They don't bully. They accept everyone as they are. They share what they have with those who are without. They are really, really good kids who happen to have autism. My children (all 3 of them, because autism affects the entire family), are, in all honesty, my heroes. They are the reason I get up every morning. They have taught me to be a fighter and also what true, unconditional love is. Of course, every mother loves her children unconditionally. But, you can't really know the depths of that until conditions are applied. I am a much better person than I ever would have been because of my children.
The significant thing about this is that my children are not an exception to a rule. They may have autism, but they are individuals just as you and I are and are not defined solely by the illness they fight. Yes, I feel a kinship with other autism parents because they get it. But, I do not assume that their children are just like mine. Because none of them ARE autism. They are Jonah, Eli, Caleb, Austin, Adam, Liam, Shane, Ty, Grayson, Catherine, Ricky, Bryan, Jazmine, Shea, Rory, Cole, Moises. And countless, countless others. They are not Adam Lanza. And they deserve the opportunity to show you what lies beyond their diagnosis.
Posted by Hillary at 10:38 PM
Sunday, September 30, 2012
For two years now, Eli has participated in the GUMBO games, our state's junior Paralympics club. GUMBO stands for Games Uniting Mind and Body. It's track and field events for kids with physical and visual impairments. Kids with all levels of ability compete, from those like Eli with slight gait deviations to kids in motorized wheelchairs and everything in between. Eli's old APE teacher got us involved last year, and it has been one of the best experiences for him and us.
Posted by Hillary at 12:15 AM
Friday, September 21, 2012
Posted by Hillary at 11:34 PM