Throughout each day, I come up with several ideas of what to write about next in this collection of thoughts and feelings. Most of the time, the inspiration leaves me as quick as it came, and I am left still wondering what I could possibly say that would be interesting for others to read, and therapeutic for me to document. It's not that I am trying to convince myself that my words speak truth, but more that in writing them down, I find a sense of clarity and relief. Regardless, this week I am having a hard time deciding what to say, so I decided to take a moment and talk about guilt. It's not a feeling I am particularly fond of, and I actually find it quite useless, but as a mother of a child who was at one time developing normally, then took a drastic turn... it is a feeling I have unfortunately had to deal with as I search for answers, reasons, treatments, and serenity.
It sounds cliche, but if you haven't lost a child in some sense of the word, you may not be able to comprehend the level of helplessness and grief that envelops your entire being during that process. "Desperate" and "lost" doesn't even begin to describe how out of control your world feels, and part of the process is determining what you could have possibly done differently to have determined an alternate outcome. I can't tell you how many times I have said the words... "if I only knew then what I know now" or how Avery's body and environment created a "perfect storm for neurological damage"... but you can't go back. So why bother torturing yourself with the impossible. BUT she WAS normal... and now she's not and will never be... so guilt was an inevitable evil that I had to overcome to get to a place of peace. A place where I am happy to report that I am getting closer to everyday.
Maybe I have written in this blog too much about the need to stop projecting and stop dwelling on the past and to just live for today. To relish each blissful moment you have with your loved ones and to take it all as it comes. But I have probably written about it so much because I need to hear it. I need to live it. I need to share it so you can help me. I don't know a single mother on this earth who doesn't feel a sense of guilt from time to time. It is natural to want the best for our children, and we are all flawed and imperfect, so we all fall short from time to time. But it doesn't mean we can't learn from it, be aware of the feeling and try to do better.
On Sunday evening I was fortunate to be surrounded by an amazing group of women. I invited almost everyone I know who has a child with special needs to come to my home and let loose for a bit. There was wine, laughter, sharing of resources, a few tears and mostly a well deserved break from the grind. Between various therapies, treatments, doctors visits and so on... most of us don't have time to come together, free from judgement and critique to support and love each other. I am glad we made time though. And I am delighted to have gotten to know some other mom's in my boat a little better. Collectively, I think we all need to give ourselves a break, even if just for a few moments. A break from stress, a break from sadness, a break from anxiety, and a break from guilt.
It's really ironic because though I wouldn't wish Autism, mastocytosis, or for that matter any delay or disability on anyone's child, I also am learning to really value and appreciate the lessons, relationships, and eminence that having such an experience has enabled me to procure. I am led to continue to put faith in the conviction that Avery's life, just as it is, is changing me, and those around me, for the better. It astounds me that such a little, unknowing, unperceiving little person can have such an impact. How fortuitous for me that I get to be her mother, and I get to see life, in all it's glory, as I am living it.
Saturday, September 12, 2009
One constant in my journey of having a special needs child for the last three years has been a fierce and eager desire for answers. I have always believed and stood by the assumption that knowledge is power, and that the more truth you discover, the more you are prepared for the inevitable curve balls life throws at you. Well... that may or may not always be true, and sometimes the more I know, the more confused I become.
I don't claim to be an expert, but I do acknowledge that it is likely I know more about how my daughters brain and body works than most of her many doctors do. I have made it my business to know. I can tell you ALL about mast cells, methylation, neurotoxins, central nervous system inflammation, thrombophilia, apraxia, sensory profiling, neurotransmitters, oxidative stress and the list goes on. I can also tell you what pharmaceutical medications help with each of these conditions, and which natural supplements, amino acids and enzymes and various therapies can lessen her suffering. I have heard one mom say she got her PhD at Google University, and I can tell you I spend about 10 or more hours a week trying to figure out what else we can do or try to bring Avery back. It is exhausting but worth every minute and every penny we spend on a new approach. You can't put a value on hope. And each time we start something new I feel a little rush of excitement thinking maybe just maybe this will help her a little bit.
Not that most of you are interested, but for those who are I will give you a run down of the various medications and supplements Avery takes on a daily basis. Everyday she gets the following: Juice Plus fruit and veggie gummies, ThreeLac (probiotic), cod liver oil gummies, olive leaf extract, A drop of detox, vitamin D, vitamin K, TMG, an injection of M B 12, Low Dose Naltrexone (LDN), a transdermal glutathione, acetyl L carnitine, L carnosine, CoQ10, turmeric, quercetin, folinic acid, ketoconozole, l methionine, singulair, zantac, zyrtec, clonidine, namenda, and good old vitamin c. phew. Obviously, we are monitored by several doctors with each of these things, and each one was introduced slowly and one at a time to regulate any adverse effects. Poor kid. But she takes it ALL like a champ. I really don't know what she would do with a regular drink since most of the time we hide these things in juice or lemonade. I am hopeful that as she gets older, and her body heals, we will be able to back off of many of these things.
My newest ambition is to get Avery in to see a Rheumatologist. Our oncologist recommended we see one about a year ago to monitor her Mastocytosis, in addition to her dermatologist and her immunologist. Rheumatologists specialize in autoimmune diseases which can impair bone and joint health. Given Avery's medical history I don't think it could hurt, and again, maybe just maybe they can help her. If all else fails locally, I will try to get up to Boston to see the #1 mast cell expert in the US. Surely he can help us. We have been in contact with him via email for research purposes as he and several of his colleagues are the physicians who discovered the link between mastocytosis and Autism. I'll say it again, you just can't put a price tag on hope.
I am also VERY proud to report that Avery is now the very lucky recipient of her own hyperbaric oxygen chamber. Thanks to the help of very loving, doting, and amazing grandparents on either side of the family, Bryan and I were able to negotiate the purchase of a used Vitaeris 320 HBOT system. We have continued to see benefits as have her teachers and therapists, so we really couldn't be happier to have this in place for her. We don't expect miracles, but this has been a very positive intervention and she happens to LOVE her time in the "bubble." I'll keep you all posted on her progress!
As you can probably guess from previous posts, and even from reading the above... it is easy to get overwhelmingly wrapped up in helping your child get better. At times it can really be all consuming. But at the end of the day.... when school, therapy, and medication administering is over... we really can relax and enjoy being a family. To us, our family is totally normal. This is how it is and we are doing just fine on the journey. Sometimes I wish we could live in our own little world where no one "evaluates" Avery, judges or tests her. Where no one compares her or defines her by her disabilities or what she cannot do. Obviously, I want her to be all she can be, but I think I have also made it abundantly clear that I love and adore her for all that she is right this minute. She makes me and Bryan VERY proud, and full of hope, love, and not to mention plenty of grace and joy.