Sunday, October 25, 2015

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

Monday, June 29, 2015

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. :)

Wednesday, April 29, 2015

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). :)