What I Want You To Know

A couple years ago, I wrote a blog about the things I wanted people to understand about mitochondrial disease. I decided to do an update to that of sorts, but focused on medications. If your kid is basically on, say- a multi-vitamin and an OTC allergy med, with an occasional antibiotic for strep throat,  it may be hard to understand what it's like to need a lot more than that.

I know  drugs and even supplements seem to be a sensitive topic for many people, and one that some can be passionate about. Driven by this passion, some people can be very open about their disapproval about what we do or don't do for Joshua, or they decide to offer help by trying to sell me a vitamin their company sells that is a "miracle." While I realize these sales pitches are generally paved with good intentions, (so I still love you; I promise), please know that first of all- we DO use natural supplements already.  Some are actually considered standard treatment for mitochondrial disease kids. If you like more the natural route for medicines, this should make you happy! But the ones Joshua is on are very specifically chosen for his needs, and our doctors often have specific brands they favor.  In addition, some are done as prescriptions and therefore our insurance covers them. I'm not going to take him off these to try and defy the doctors' ideas and spend additional funds when I don't need to. I also can't imagine losing the groundwork we've gained just because your sister's husband's aunt had good luck with the magical supplement of the hour. If I ever do hear about a  remedy that I feel could truly be a useful addition (not replacement) to what we already are doing, I'll let you know. In other words: don't call me; I'll call you! 

I also want people to comprehend that when we use a conventional medicine for Joshua, it's always researched, justified, and also sometimes a last resort. We have arrived at some drugs that you may have never heard of, or, if you look them up, they describe a different use. That's because almost everything with mitochondrial disease and other diseases with limited treatment options is prescribed off-label. I've learned to be ok with this, although it can still be nerve-wrecking. If we try something and it isn't doing what we hoped, we remove it from the regimen and try again. Please understand that all drugs do have known side effects and yes, I have read about them. You don't need to re-scare me by telling me the horror stories you uncovered on the Internet. If we note that a drug is causing more harm than good, of course we'd remove it from the plan. 

Along those lines, we do frequently comb thought his (admittedly long) med list for ways to shorten it. We recently took him off baclofen (generally used for muscle spasticity but in his case for esophagus motility... See what I mean about off-label?) After several days, he started to have swallowing issues again and asked me to put him back on it. After talking to the prescribing doctor, we decided to put him back on one dose a day versus the previous two he'd been on before, and that is going fine. 

You may now be wondering why we need so many medications in the first place. The answer is that mitochondrial disease affects multiple systems. So Joshua, for example, needs medications for his heart, lungs, brain (nervous system) and GI tract. In addition, there's an energy deficit and that's where the supplements come in, to try and replace what the body may not make enough of, or process efficiently, on its own. 

Deciding to try certain meds, and especially to stay on them long-term has been one of the hardest pieces of this journey for me. I cannot state this enough: I do not take any of this lightly. Does it sometimes keep me up at night, even though other times I'm very at peace with it? Absolutely. 

The other thing I want you to know is that despite knowing these medications are essential to helping Joshua, it is a lot to organize daily and sometimes I really do wish he could wake up in the morning, have some cereal and watch cartoons leisurely  rather than sitting down at the table for a bunch of medications that sometimes don't even taste that great. Likewise, I wish I didn't have to stop his playtime in the afternoon for more meds, or make him do breathing treatments, or put the anti- pain lotion on his legs or check blood pressures, and then do it all again at night before bed when we are already exhausted. 

But of course I'm glad there are some things that help. We don't have the luxury of talking "cure," but we are lucky to have a few tools. And that's what I want you to understand. <3

In Defense of "Sorry"

Lately I seem to come across a lot of blogs from special needs parents regarding what people should not say to them. Honestly, if I was not a special needs parent myself, I think I would be a little scared at this point to say anything, for fear I would get it wrong. While I do agree with many of the points made, here is one in particular that I don't agree with: apparently, upon sharing news that our kids have a certain diagnosis, it is considered uncool for the person to respond, "I am sorry." The reason for this, (according to several blogs I read), is that "I am sorry" implies that your child isn't a source of joy, but a sad case to feel bad about. But if you come to me, even though I am a special needs parent, or maybe BECAUSE I am one, and you share with me that your child has... autism, mitochondrial disease, cerebral palsy, or whatever, I am still very likely to reply, "I am sorry." And this has nothing to do with not understanding that your child is still an amazing light in the world. You will have more joy at times than you know what to do with.

But I am still sorry. I am sorry because I know this is going to be a harder parenting journey than you bargained for. I am sorry because you will spend countless hours at doctors' and therapists' appointments. I am sorry because you will be saddled with endless amounts of paperwork all the time. I am sorry because you will have to fight tooth and nail to get what your child needs in school. I am sorry because you will spend more days as a special needs parent than a typical parent wondering if you are doing all you can for your kid. I am sorry because there are milestones that will never be met. I am sorry because you will be faced with big, scary decisions regarding medications and surgeries. I am sorry because you will often be lonely, even in a crowded room, even with good friends who try to support you. I am sorry because that joy I mentioned earlier? It may end sooner than your parent heart can bear. I am sorry you even have to consider the sobering thought that you may outlive your child.

Now, I do believe an "I am sorry" comment should be followed by something hopeful and sincere. What do myself and other special  needs parents want to hear, then? Probably a simple, "you're doing a great job" can go a long way. If all else fails, invite us out for margaritas and we'll likely forget any verbal blunders you may have made. :)

About That Cat... and other things.

Ooooh boy, it's been a long time!  And this won't be a fancy or eloquent post. I just want to catch up! Let me confess, aside from being busy, one thing holding me back has been my lack of technical skills. I've wanted to change the URL for my blog because I felt it no longer was a good representation of what I wanted to write about. It was "3 times blessed," and while yes, I still feel fortunate to have my family and know we ARE lucky, the word "blessed" has been over-used in social media to the point of nausea for me. And if we are being honest, I felt like maybe it misled people to think this was a religious blog. If you know me, you know I have faith but that sometimes I question that faith and that all of it is expressed in our family quietly at home. I am not and probably never will be a church-goer, and I am ok with that.

So today not only did I finally figure out how to change the URL, but I also realized it was the perfect opportunity to add in the new addition! I might blog about him a lot. No, I haven't had another baby. But we adopted a cat a little over a month ago. His name is Taffy. I frequently call him "Kit Cat," "El Gato" or just "Hey You." But surprisingly, I love him. I mean, really love him! I have had bunnies before but never a cat. I was a very reluctant cat owner, and now, like so many things we choose to take on, I can't imagine my life any other way anymore! The cat was mostly Joshua's idea. Thankfully, he got the affectionate personality he wanted. They've made fast friends.

I no longer keep up with Caring Bridge. I also don't talk much about Joshua's health stuff on Facebook anymore. Just know that while challenges remain, and are sometimes harder than they even were before, we are ok. My life is: medicine dosing, syringe washing, breathing treatments, therapy appointments, doctors, school drop offs and pick ups, baseball, soccer, swimming... And me, sometimes me. I love to get alone time or time to see friends outside the house. My sanity is kept by the escape of books or movies. No matter what though, I am first and foremost a mother. And just doing the best I can every day. (Just like you are). :)

Holding On A Little Bit Longer

Dear Joshua at age 6,

You're the last baby, so you're allowed to come in our bed in the middle of the night, squish in-between us, steal the blankets and force me to sleep halfway off the mattress edge.

You're the last baby, so you're able to bring your bunny to first grade in your backpack (provided he stays tucked away). Maybe some would say you're too old to be allowed this luxury, but I have the wisdom gained from your brothers before you that tells me this won't last forever.

You're the last baby, so I linger for extra bedtime hugs and kisses. I savor the storybooks, bath toys and cute pajamas. The nightly rituals of early childhood are among life's simplest gifts.

You're the last baby,  so I procrastinate weeding out the blankie and sippy cup collections. When those leave my house, I will never have a reason to replace them, and sometimes that makes me sad.

You're the last baby, so I often forget how big you really are. Your height actually rivals that of your 9 year old brother's.

You're the last baby, so I have gratitude for you being the one to truly teach me patience and multi-tasking.

You're the last baby, so I'll never again be the frazzled mama at big kid school pick up with a fussy toddler on my hip, looking for his pacifier. I didn't know I could ever feel sentimental about moments like that, seemingly so stressful at the time.

You're the last baby, so while I want to keep you little, I know there are joys in watching you grow. I hope for your happiness and health and many fun stages to come.

Love,
Mommy

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