In The Moment... Again

Living in the moment is a popular notion. There are countless blogs, articles and books created to teach us how to incorporate this way of thinking into our daily lives. I've written about it before, too, finding it essential to my happiness. 

It seems to apply so much to the life of a parent who has a child with an uncertain prognosis. How else can we get up, and do all the tasks required for living in a relatively calm manner, unless we take things one step at a time? 

I feel challenged when I am so stressed that I have to remind myself constantly to stay in the moment. The sweet spot for me occurs when I'm living this way effortlessly. Sometimes I can actually go a few weeks at a time without thinking about the future and making guesses what that may look like. 

It is harsh reality that all my maternal love cannot anchor my child with mitochondrial disease to the earth as long as I want. I am not ultimately in control. I can do all the research, take him to all the right doctors, try all the right medicines, and it still may not be enough. 

But here's the thing, and we often forget it. There are no guarantees any child will make it to adulthood. There are accidents every day. There are fluke illnesses that take the life of an otherwise healthy kid. So I've been spending all this time assuming I'm different than other parents, and I am really not. Likewise, us adults are not invincible, either. Even those of us who are relatively young still and healthy have no guarantees on this earth. 

We ALL have to live in the moment. It is truly all we have. We should take that trip, call that old friend, let our sons or daughters stay up just a little longer, and hug a bit tighter. I think those moments make us lucky, whether we get 1000 more of them still or just one.  The fragility of life is best seen as creating our experiences' beauty rather than tainting it. 

What I Want You to Know About Mitochondrial Disease

As we begin Mitochondrial Disease Awareness week, I am finding myself tempted to share statistics or re-post articles that have me nodding my head. I still may do these things. More importantly, I wanted to try and describe my personal experience with mitochondrial disease and how it affects my family.

This is what I wish for you to know, and to understand:

1. Mitochondrial disease can affect anyone at any age. It can be quite obvious, or very subtle. Patients can manage to participate in sports, or can be confined to wheelchairs. In our case, Joshua falls somewhere in the middle. He has exercise intolerance, but he can walk short distances. He uses a wheelchair for longer walks. Sometimes he rides for shorter ventures if he is just having a bad fatigue day. We are thankful to have the wheelchair. We are also grateful he does not, at this time, need it constantly. But it still sometimes makes my heart ache that we even need one at all.

2. Many physicians have been involved in the diagnosis and care of Joshua. We still lack a specific diagnosis for his health problems, (despite all their expertise), therefore, they say he has "unspecified mitochondrial disease." It is common to spend years to even get this generalized diagnosis, much less a specific one. Even the newer, more sophisticated methods of "combing through" all the DNA will not find EVERY type of mito defect out there. We are currently waiting for results of a whole exome sequencing test from TGen that makes us feel hopeful. This has not been an easy road, seeking answers. It makes me upset when someone says that they would stop looking and "relax" if it were their child. You would? You would not want to know what affected your child's daily life in such a dramatic way, or what it meant for their siblings or future generations? Think about this for a minute.

3. There are many issues Joshua has that are considered secondary to his mitochondrial disease, which include: gastroparesis, GERD, hypotonia, autonomic dysfunction, asthma, food allergies, tachycardia, neurogenic bladder, immune deficiencies, dysphagia, heat intolerance, hip dysplagia, cerebral palsy, autism spectrum disorder, visceral hyperalgesia, convergence insufficiency, etc. Even dealing with just ONE of these problems can be hard. So we juggle them all, like a crazy, multi-ring circus! We are constantly adding new issues to the mix, and trying to figure out how to manage them.

4. In many moments, on a good day, Joshua can appear pretty typical. What a blessing! However, I am aware that people also do not take into account all that we go through to make this so. Before leaving the house for school, for example, we give him his medical formula, four medications and a supplement. He takes three additional meds in the afternoon, and he needs approximately ten interventions or meds before bed, depending on his status. There is no cure for mitochondrial disease. There are only meds to help the secondary issues mentioned above, and supplements that are believed to aid in mito function. Almost every thing is a shot in the dark, all the time. We give things, often paying out of pocket, in hopes that they provide some benefit.

5. I have encountered a vast support system of other mito parents online, and some in person here in Phoenix. I am thankful for their support, and I hope sometimes I can help them as well. We share advise and experiences. We have each other to vent to when no one else gets it. Some of them have children who are no longer living. But they still come on the Facebook groups to offer support to the others. These are incredible human beings. Never can I express enough my sorrow for their losses, or my appreciation that they still fight for the other mito kids.

6. I am a pretty positive person, but I have tough days. Sometimes I worry a lot about my other children. I worry about my own health issues. I worry about Joshua's future. I enjoy posting on Facebook and texting my friends, or going out, but there are times I feel I cannot be completely honest about the difficulties I am facing, and therefore I withdraw into my own world for a while. I cry more often than I like to admit. On the flipside, there is love. So much love. I do not take much for granted. I am determined to be an advocate for my child. One of the ways I can do this is by allowing myself to open up at times like this and do my part to make mitochondrial disease a household word. If you would like to find out more, please consider checking out www.mitoaction.org

Dear Phoenix (A Love Letter)

Dear Phoenix,

I have been in love with you since I was 10 years old, and I came to visit with my parents. I never wanted to leave. When I was told several months later, (sitting at our kitchen table on a cold Illinois day), that we would be moving here, I cried tears of happiness.

I enjoyed growing up here. I feel like you grew up with me, from a baby city to a sprawling metropolitin area. I only abandoned you when I went to college in Colorado for four years. Colorado is an inarguably pretty state, yet it only left me missing you. I craved returning to your cool winter nights, sitting outside by a fire, and your warm spring days with a desert in bloom. I even missed the summer sun, and the relief that nightswimming or monsoon storms can bring.

I do not think I love you in spite of your imperfections, but because of them. The desert can, at times, be a harsh environment... a little too hot, or a little too dry and plain-looking. That means I have to look harder for your beauty on certain days, but it doesn't take long. It is always there. A brown, seemingly dull landscape, will generally hide an interestingly-shaped cactus, or a desert plant with flowers. You may not have green, rolling hills and forests of tall trees some people have come to associate with beauty, but you radiate all the same.

Some people may connect their home with a traditional smell such as honeysuckle or roses. I desire only the smell of your creosote  after it rains. There is nothing else that can calm me like this, or remind me I am where I belong.

Thank you for your magnificence.

Forever Yours,
Debbie

6th Grade, Autism and Life Wishes

Tomorrow my oldest son starts 6th grade. 6th grade!!! It is his last year of elementary school, in a self-contained twice exceptional program I fought hard for him to be a part of. It has also been six years since his autism diagnosis shook our world and changed everything we thought we knew. (The photo is from right after we found out, though there's nothing in that smile that indicates anything was amiss!) A lot of times I still see the immature aspects of him versus his peers. I have to repeat things a lot. Every night I can tell him to do "xyz" in the morning, and nine times out of ten, it doesn't happen. He has meltdowns comparable to a toddler, and yet more violent in nature. He obsesses about his interests and will talk endlessly about them to anyone who will (even remotely) listen. He struggles with eye contact. He needs an enormous amount of help organizing and being motivated to do any homework. He still attends weekly OT and speech appointments. It's all part of the gig... the autism gig... the one I did not sign up for but took on as a labor of love, the way all parents of kids on the spectrum do. Despite the fact that some things are stagnant and we have rough days often, we have still come so far! No accomplishment is small, in my eyes. Every step forward has been hard won! It is interesting at the start of a school year to see what parents of typical children worry about for their kids compared to special needs parents. (One of my kids IS typical, so I feel I am in a reliable position to make this observation!) There is a lot of chatter about which teacher is best, what test scores a child might have, how the grades will be, how the child might do in sports, etc. I want those things to work well for my autistic child, also. However, it isn't my focus. Those things would be icing on the cake. All I really want is for him to be happy. I don't just mean in school, but even afterwards, in life. I want him to find a job he is comfortable with and that doesn't stress him out too much. I want him to be able to care for himself by shopping, cooking or doing laundry. I want him to have a friend (more than one would be nice, but even just one really good friend would be fabulous). I want him to be a respectful son and brother. I hope he will learn to find joys in little things... the relaxation of a rainy afternoon, the discovery of a new hiking trail, the satisfaction in finishing a good book, the fun of getting lost in a great movie. I want him to realize he is an amazing human being. I am sure there will be some ups and downs in 6th grade, as there will be later in life, too. Experience tells me that we can weather any storms together. Sometimes solutions in autism resemble a complex maze rather than a straight and easy path, but we find our destinations eventually.

In Honor Of...

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.

Reality, Heat and Hope

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.

On Eating Out With Special Needs Kids: Why We Still Try

Saturday was Cinco de Mayo, and so I decided I "had" to have some chips and salsa (ok, and a margarita, too). The way the restaurant experience went was pretty typical for us. It wasn't one of our better outings with the kids, but it certainly wasn't the worst, either. We went to a local Mexican restaurant, which took about 15 minutes to drive to. During this time, my 7 and 4 year olds hit each other with a toy drum stick, which of course my husband took away, which then caused more screaming. When we finally arrived, there was a 10 to 15 minute wait for a table. My 4 year old fussed and moaned so much that I finally picked him up, hoping some cuddles would calm him down. Once we got seated, we realized the booth was pretty tight for our family of 5, but we didn't want to wait for another spot to free up, so we decided to make the best of it. Now on to the next challenge... Two of my children and myself have food allergies. This was a restaurant we had been to before, so I knew what I could eat, but it had been a while since the kids went to this particular place with us. I was racking my brain trying to remember what things were ok from the menu. Once I got that figured out and the order was placed, I remained busy trying to keep everyone hydrated and happy. My 4 year old requires thickener in his water, so I luckily had remembered to bring that. Usually when we go out, I also bring some extra snacks such as cereal or fruit chews, plus some baby food and his medical formula. This provides a "safe guard" in case he doesn't feel like eating much from the restaurant (which is often), or, in case the food allergies are too hard to figure out at an establishment. If I am lucky, I also have remembered to pack some form of entertainment, although on this day I really didn't have anything with me that excited anyone! Once the meals came to the table, we checked carefully to make sure they had been prepared to the specifications we need, and then we got busy eating. Well, some of us did. My 4 year old pushed food around on his plate. I think he finally ate one french fry. My older kids did fine. However, they are not immune to table time issues, either. Sometimes they get restless and try to act too silly at the table. Other times, an allergen winds up in my 7 year old's food. (He can't have dairy). Sometimes my 11 year old suffers from swallowing difficulties. Even my husband can struggle with this at times, thanks to a disorder referred to as "EE" or "EoE." We have been in restaurants before when one of my kids had a tantrum, cried about reflux, or worse, vomited at the table. With all of this on board, you might wonder why on earth we don't just stay home all the time. Here is why: I like going out to eat. My kids also, generally, enjoy this change of scenery from our normal life. We have a small house and an even smaller kitchen. It's fun to spread our wings now and again. Aside from that, eating is social! I have two children on the autism spectrum. That, or the food allergies and other digestive issues could scare us off from eating in public, but I think of all the opportunities they would miss if I simply isolated them from meals out, picnics, school carnivals or birthday parties. Almost everything social involves food! I would hate for them to grow up believing it is too hard for them to join in these activities. When they become adults, I want them to feel confident that they can handle a noisy restaurant, and that they can navigate a menu. I want them to accept the invitation to a friend's birthday party, wedding or baby shower. At the very least, they can eat ahead of time and simply go for the sake of supporting friends and mingling. This is what it is really about. If I keep instilling in my kids that they CAN do this, then it will positively impact their future. Until then, though... I might be needing an extra margarita!