Thursday, June 21, 2012
Early this morning, a little girl named Mylee Grace earned her angel wings at the tender age of five. She suffered complications from chiari and mitochondrial disease. I'd heard about her and seen her lovely smile many times via social media, but I unfortunately never met her. Her mom and I are Facebook friends due to many mutual friends and that shared special needs connection. Unfortunately, this isn't the first death of a child I have heard about in our special needs circles. It won't be the last, but it has made me the saddest. It hit home due to the mito. And it really has made me think. When someone passes away, we try to take a piece of them with us, to honor them, to change our own lives for the better. We say someone touched us or inspired us. How does this work when someone dies who you had never met? I think it's like this: Today I changed fifteen diapers. Fifteen. Fifteen MESSY diapers from my FOUR year old, who should be potty trained, and who is obviously suffering from some sort of intestinal ailment right now. Each time, I wanted to grumble, or be annoyed, or feel sorry for myself. But, I caught myself. Oh sure, I still wasn't jumping up and down about the task at hand, but I thought about how much I would miss every moment, even THOSE moments, if Joshua was no longer with me. I will try harder than ever to take all of it... the diapers, the messy house, the formula spills, the crying, the therapies, the doctor's appointments... in stride. Because if those things were gone, if he was gone, I would miss it all terribly. Mylee, you are pain-free now and I am praying for your family. Thank you for making me more aware of the blessings in my every day tasks. I am wearing my butterfly necklace... and smiling while I change those diapers... because of you.
Tuesday, June 5, 2012
I love the whole glass half-full concept in life, and I will try to keep up with that as much as I can. I am going to be honest, though, the past couple of weeks have been rough. We've had a change in routine due to school being out for summer, and the heat has been especially hard for Joshua. As much as I want to continue to sugar-coat things, or nod my head with a smile when someone says he is doing "great," I just can't right now. More and more, I see that what we are dealing with is simply NOT normal, and I won't pretend it is. What you see as a good moment can so quickly progress into fatigue and dehydration. Also, a glimpse into our home life would show you what we go through for a chance of him to be even at baseline. Before you see us for a morning playdate at your house, a therapy session or an outing at the movies, a lot of things have already happened. For one, I was likely up til the wee hours with a racing mind, researching, emailing, or (if I am lucky!) reading for fun, just to relax a bit. Joshua has likely crawled into our bed crying and fussing around 3:00 or 4:00 a.m. He may have had leg pains, and stomachache or needed a diaper change. He likely has already had two reflux meds, one supplement, 8 oz of his elemental formula, a motility med and an electrolyte-containing beverage with thickener. He probably has not, however, eaten breakfast, as he usually lacks interest or ability, despite our best efforts. So, the whole time we are out, I am worried about his nutrition and fluid intake as well as how his body is reacting to the heat. I am also observing how he is walking and how tired he seems, to determine if it is a wheelchair day. I am observing any swallowing he does to make sure he isn't aspirating. I am watching his cheeks for signs of redness, his eyes to see if they are swollen, and feeling his skin for cold sweats (hypoglycemia). I am sometimes scared we should not have even left the house, but I try to create as normal a life as I can for him and his two older brothers. I have to carry a huge bag full of stuff just to make an outing safe. I always come home exhausted. On a different note, I am observing listening skills, emotional regulation, speech patterns and socialization, none of which I can claim to be age-appropriate, so that is a whole other avenue to deal with. I realize all parents worry and many parents have so much more on their plates than this. I admire those parents more than I can express. Joshua has done well over time in SO many ways, and for that, we are lucky. I don't want sympathy or- so much worse- pity. I simply want understanding of what families like ours go through on a daily basis, and how that is also amplified by summer heat. Diseases such as Joshua's metabolic/mito dysfunction are similar to lupus or chronic fatigue syndrome in the sense that the patient can look fine in some moments, or even for days at a time. It's both a curse and a blessing to what we refer to as "invisible illnesses." In these cases, a lot of compassion and a desire to learn and spread awareness can go a long way! One of the best things someone said to me recently was, "I don't really understand, but I WANT to!" Thank you for that. I hope many others will follow in your footsteps, with an open mind and heart.