“To laugh at yourself is to love yourself.”

Hope. Faith. Love. Family. Light & Laughter. Care about rare. Only disability in life, is a bad attitude. It’s not our disabilities, it’s our abilities that count.

Hunkered down at a local winery in an oversized comfy chair, listening to mellow acoustic music, while sipping on my well-deserved and refreshing Chardonnay, is one of several ways that I find inspiration to write, and more so with my heart, than feeling the necessity to. And clicking a quick save-as, seeing my last blog was almost five months ago…obviously, inspiration has been lacking and slow moving…but it correlates with winter and early spring right…??

I’ll give the obvious and necessary updates that have been going on in our lives throughout this post, but I’m going to attempt this time to dig a little deeper, focus on Riley as this amazing little boy, and not just his struggles. Focus on us as a family, and my own journey and self-discoveries. I always have a bit of a rough start to writing, trying to figure out what I want to say, how I want to say it, trying to not forget things, etc. So, I looked up some inspirational quotes, as you see a few I started out with. But I stumbled upon a few from Disney movies, and a lot are from some of Riley’s favorite. So, I immediately decided that somehow, I want to incorporate some of these throughout my writing tonight. They all fit his and our lives, and are not out of random Frozen, or Tangled or even older movies he has yet to see like Dumbo. The movies mean something, as do the quotes. I’m going to attempt to be a little bit slyer moving forward, but here is one to start.

“You are braver than you believe, and stronger than you seem, and smarter than you think.” Guess who…. said our favorite Winnie the Pooh.

If you told me four years ago when I was pregnant, or even five years ago before the knowledge of having kids sooner than planned occurred; that our lives would totally and completely turn upside down, I wouldn’t have believed you. Not only with the sweetest child on earth, but who had lots of baggage (try many many suitcases worth) of health problems that we still wouldn’t have solved by his fourth birthday, I would have said you were crazy and never would have believed I could handle the difficulties that came with. But what’s funny, and many parents say this, it’s really hard to remember life before your kid(s). For instance, my night out tonight, me trying to figure out “Oh my gosh, what do I do?!”, I went for a nice scenic walk and am now writing, and drinking wine. Party!! Ha. A lot of parenting is learning as you go, and even more so when it comes to having a special needs child with complicated medical issues. So as you learn that way, you also learn how to deal with realities, grow from these experiences and learn how to live a new “normal” life, together. “If you live to be 100, I want to live to 100 minus a day, so I never have to live a minute without you.” Once again, wise Winnie the Pooh.

We’ve had three and a half years of so many unknowns, and now less than three weeks from his fourth birthday we still don’t have, definitive, answers. We do have some, but their broad. He has a neurodegenerative disease, but does that mean he will degenerate in a matter of months? Few years? Many years? God only knows, because he sure has kicked doctor’s theories to the curb! Just over a year ago, most didn’t think he’d make it home from the hospital, now it’s a year later and he’s not much worse for the wear, and thriving in other ways. He does have an upcoming EEG at the end of the month, and he hasn’t had one in a really long time, so now off of one of four seizure medication, we will get a true sense of what’s going on there. We also have a MRI next month to see how things have declined, or stayed the same in the last year. And a genetics appointment to discuss further the abnormalities that he does have on his ALG14 gene, but further testing has come back fine. He’s in a few research studies, and will be doing a skin biopsy probably next week to send off to have furthermore and new detailed studies done on the specific variants of that gene. And with how quickly growing an industry that genetics is, maybe someday we will know what it really means! “The things that make me different are the things that make me, ME.” Said by adorable little Piglet.

Oh, and another thing that will be discussed at his genetics appointment in a few weeks, details on further children. GASP! Hands down that’s what half of you just did….!! “Reach for the sky!!” Woody from Toy Story seems to have the best words on that one. Yes, we’ve always wanted another child. Beyond two, has never been a huge excitement for either one of us. But from Riley having “something” going on from as young as five months old, it got put on the back burner. Now, I’m in absolutely no way ready to be pregnant, any time “super” soon. I’m going through my own self journey, enjoying time with my family, stepping into a lot of changes in our house with summer, DDA services, preschool this fall, hopefully me returning to at least part time work, etc. Not exactly hot timing, nor are we confident at this point. But having the genetics appointment prompts the conversation. What could be the possibilities of our next child getting mutations on this same gene, and what could that mean. What testing can be done while pregnant, knowing Riley’s current situation, etc. Neither of us wanted our children to be as far apart in age, as they are going to be at this point. So mathematically…not wanting a second child to be due during Riley’s peck sick season (seems to be early/mid spring!), DEPENDING, maybe a bun in the oven sometime next summer? And this is me TOTALLY and COMPELETY thinking out loud. “Put your faith in what you most believe in.” Tarzan once said, and I believe that we were meant to be Riley’s parents, for as long as he’ll have us, and he was meant to SOMEDAY have a sibling, beyond crazy furry Sadie. So now that he’s almost FOUR (someone please tell me how that happened…), it’s at least on the table. And that’s where it stays until we say otherwise…

K, so not exactly a Riley Disney movie quote, but it fits for me, especially right now just having seen the fifth movie: “The problem is not the problem. The problem is your attitude about the problem.” Said that wonderful and crazy Jack Sparrow from Pirates of the Caribbean. I always knew there was some sort of line that would overall sum up ways I’ve been feeling, and emotions I’ve been dealing with, ever since at least last spring when things looked, at the time, so downhill for Riley. I’ve been on and off my antidepressant since about Riley’s first birthday, around the time his Infantile Spasms (his first form of seizures) started, and treatment was kicking in. It’s really ridden with the course of his health being stable, is when I haven’t felt the need for them. But with gloomy winters, and a horrible last spring, I’ve been on it consistently since January 2016. Seeing and experiencing this spring with two more hospital trips again, but this time both so much shorter and without a breathing tube both times, coming home to stability, I put my foot down, for and to myself. Time to get my shit together.

Riley has always been priority number one. And I’ve always known and sort of done enough self-care to get myself by. When things are more dyer, more focus goes towards him. When things are more “stable”, that slack gets let out some and I do what I can to keep myself basically sane. I love my son, and my husband with all my heart and will always do anything and everything for them. But some light bulb went off in my head this spring. Maybe it was the amount of stress weight I realized I’ve put on over the years, maybe it’s just not wanting to feel like I need medication to treat my depression, I don’t know. Probably all the above. But I have and am doing something about it. If you are friends with me on Facebook, you’ve probably seen that during the month of May, I’m making more of a consideration for myself and my own health and happiness. That means not only physically but emotionally and mentally as well. Physically I always set goals way too high, but between where I’ve even come with that in a month, and changes mentally and emotionally, never would I have thought by June 2^nd, I’d feel so much more like MYSELF. And an OMG here, I can’t begin to tell you how amazing that feels.

I feel like I’m the captain of my own ship again, taking controls into my own hands, as much as humanly possible. Is it weird that it makes me want to go out and re-pierce my nose like I had prior to Riley, and get another tattoo (which I do know what I want and have had for a long time)? Not in a way to “recapture” my “youth”, but in a way of finding who I was before, and being EXCITED about it. I don’t know when I was EXCITED to be myself last. To really take in that deep breath and smile. And I can happily say I’ve learned how to manage these discoveries and re-discoveries, and go about our “normal” daily life, without treating my depression, with medication, for almost four weeks now (don’t worry doctor approved). Didn’t want to make that public knowledge until I really felt good about it. I’m learning to manage the sorrows, down times and depression I do have, and yes mostly is Riley health related, by finding small times for myself, connecting with my friends and social media peers, writing like I am right now, taking baths, doing challenging workouts, and anything knew (within my comfort zone, which has expanded…). “Hakuna matata! It means no worries for the rest of your days”, funny little Timon and silly Pumba would say from the awesome Lion King.

I don’t believe I will never have any worries the rest of my days, but I’m doing what I can to take the weird ass cards of life we were dealt, enjoy them together and figure them out together. Riley is WORTH it. My marriage to the most wonderful man is WORTH it. I am WORTH it. “Just keep swimming…” (oh common, you know who sings that one….), some days does feel like a mundane type of swim through life to keep things rolling, good or bad. But the good times you experience together, like going to the zoo the other weekend, with Nana of course, and having Dave the giraffe meet us up close and immediately smell Riley’s feet, to him learning to grab and swat your phone away when he wants all attention on him, to the absolute heartwarming smile and giggles that come daily now, with a bit of Riley toddler attitude (ok, probably more than a bit now), thrown in. Summer is looking good…. really good….

“To laugh at yourself is to love yourself.” – Mickey Mouse…. such a wise mouse, no wonder Riley loves him!     

Odd comforts & springing ahead

My new year’s resolution of writing more is totally working out well, ha. Ok, so I may not be blogging as much as I had wanted to try and do, mainly due to the time and effort, but I am writing more. I bought myself a journal for the first time in years, where I feel even freer to say what I want, and I have been using that on a (more) regular basis. But today Gram is hanging out with the boy and I set aside enough time after my errands to sit at a local coffee joint and tune the world out with my words. So here we go.

We managed to go in to our first PICU trip this year together, and came home together. After the difficulties, Riley endured last flu season with RSV & pneumonia, and another pneumonia with a broken leg, we’ve been just waiting on the edge of our seats for the next big trip and hoping it goes as well as possible, but also knowing the reality that there is the possibility that it won’t. But guess what. This ended up being the SHORTEST hospital trip for an illness (12 days total including admission and discharge), and he rocked it for the first time in a long time, WITH NO BREATHING TUBE! We’ve been so nervous knowing how bad this flu season has been, how many more have passed because of it, so God only knows how it was going to affect our little man. More than likely he got it from me, and in all honesty, I think he rocked it better and faster than I did for the most part! If his stubbornness came from showing Mama up this time, I’ll so take it!!

Hospital trips never go smooth though. There is always some other curve ball he likes to have doctors scratch their heads about, that doesn’t necessarily have anything to do with the reason he was admitted (Flu, strain B). It seems like last year we came home with a lower “normal” heart rate, and even more so this time. Looking back, he probably dropped roughly 10 beats/min at last discharge (beyond his normal not what he was admitted with). Now it feels like he’s dropped another 20 beats/min, beyond normal. So, his sleeping can be anywhere from 60-90s, and awake 75-120s. Yes, as a kid gets older, their heart rate starts to slow down (verses being 160s+ when you’re a baby), but it’s always co-insided with a hospital admission, and then discharge. And with how low, not quite pushing bradycardia (how many new medical terminology have you learned and looked up?). Of course, he started this just a few days before going home, in the middle of the night, with a combination of low blood pressure. His BP eventually stabilized, but his heart rate has stayed lower, it was “just going to be kept an eye on, while he’s here”. K, nothing drastic happened, but now we are still a bit on edge and aren’t going to ignore it. Makes me wonder why, and why these instances are tied to hospital trips, that tend to have higher stress on his body (that has a progressive neurodegenerative disease). Not to mention, much more instances of oxygen de-saturation. I just wonder, specifically the oxygen desats, how that’s starting to have an effect on his heart….

Plus, he’s always had on and off urinary retention issues, a little bit of a cluster f*** of it the weekend prior to being admitted, of course when I was out of town. So of course the first few days with feeds held he peed less, despite extra fluids, made him puffy instead, surprise! Always happens, you’d THINK docs wouldn’t be surprised by it with him…let alone most kids. He then got back on a normal schedule as he started to feel better, and then the last few days it’s like he was almost making less. His bladder wasn’t holding on to it, because he was never bloated, just less coming out. So, makes everyone scratch their head, but of course have with no real answer and it’s “just going to be kept an eye on, while he’s here”. Thanks, but what happens if it turns into something?

But we also can’t stick around the hospital on the ‘what if’s’. We’d literally be living there, with the unknowns in Riley’s future. And yeah no, not happening. It’s already really weird, that going back in there is…comfortable. And I HATE that it is…it shouldn’t be right? It should be unnerving, scary, weird, etc. And it is all those feelings, but comfortable has been added to the list. It’s the way that we are used to how those beds feel, we are used to hearing noises and alarms in the middle of the night, we are used to answering the same questions over and over. Hell, guaranteed we know 2/3 of the PICU staff, when it comes to the fellows, attending’s, nurses, RTs, UCs, etc. They all know us, and know WE RUN the show and do what WE say. They understand that we know our kid best, and that his journey is far from a normal one. Now, the residents. They’re learning, I get it. When we first had, Riley admitted this time last year, we didn’t really know how to deal with them, as some wouldn’t really know what to do, some would forget things, some would suggest the wrong thing, etc. But we learned to speak up very quickly, and go over their heads when we need to. It was actually a little hard for me to try and keep my mouth shut during rounds each morning while Riley was there. I wanted to correct so much. I’d usually be the one to talk and end the round, tell them my opinions and how we are going to do things, and ask questions if needed to the attending on (almost every single one of them KNOW Riley well). There were several mornings where they’d conclude the round with “Listen to Mom, we do what she says”. That’s right, now can I just be handed my credentials?!

We have definitely been blessed with a huge goofball the past few weeks, who is OBVIOUSLY feeling better. I don’t know if he’s even coughed since we left. Unquestionably, planned out his slow progress of getting over the flu the way he needed, and he cooperated. If some docs had, had it their way, we would have gone home a whole week prior than we did, and he proved a few days later he wasn’t ready with a scary call to us while we were out to dinner. First one I’ve ever answered, they’ve always called Chris first. Just keeping everyone on their toes, he’s such a stinker about that!

But the adorable, silly, giggly, goofy man that he’s been feeling like lately is just so fun to see and fills my heart. Tickling his belly and fart noises are currently the most hilarious thing in the world to him. I’m curious to see how his alertness continues to improve. Before we went in for our PICU trip, he had just over a week left on a taper of one of his seizure meds, Zonisamide, which he’s been on since August 2014. Yeah, over 2 ½ years. Now that he’s home and doing well, we’ve resumed the taper, and he will officially, and hopefully successfully, be OFF it, as of this Sunday. Most all seizure meds have a side effect of drowsiness, this one especially. So, as we’ve dropped the dosing down, slowly, he’s come to such life, with seizures still under control (THANK YOU Ketogenic diet!). He still has his “space-cadet” moments, sort of in a way I’d think a neurodegenerative disease to reflect in someone with Alzheimer’s, but not as often now. The lack of Zonisamide is lifting a huge fog, we have more of a toddler attitude and personality each day. He’s a little ham, who’s understanding more and more what you’re talking about, especially people and faces. He giggled this morning when I asked him where his Auntie Staci was, and smiled at a picture of her and his buddy Zeke.  Made my day.

The rest of this year (as it’s somehow almost APRIL), is filled with many new things, and changes. Mister man will be four years old in June, which means his DDA eligibility expires then, so I just dropped tons of paperwork in the mail to get the ball rolling with re-upping him, hopefully in the epilepsy category (as he doesn’t have a super specific diagnosis). Hopefully this will open some doors to him as far as Medicaid again, maybe respite care, waivers, etc. We will see. This process has not been easy. And soon we may start the process of planning the specifics on his start of preschool this fall. HOLY SHIT. We held him last year due to his rocky medical status, but if we don’t have HUGE hiccups between now and then, I don’t see why we couldn’t make it work for him. I think he’d enjoy the new experience.

We also have a genetics follow up in June, a few days before his bday. Now, I know there may not be much to discuss, as I have direct access to his doc (that’s right, I’m that mom that doesn’t NEED an appointment). But maybe by then we will. I know at this point we at least want to go over what it looks like, and what all we could do, as future children. I’ve also added Riley to the MyGene2 database through the UW, to help families connect, whether you have a diagnosis or not, and to get his story out there and available to others. Maybe someday, it’ll make a light bulb go off in some one’s head. But at the very least, they are going to re-run his whole exome sequencing on a research level, that may give us a lead, that the clinical sequencing did not. Plus, I just mailed off signed consent to Children’s Hospital of Philadelphia, to be a part of a new study through Dr. Vandever, whom Riley’s SCH Geneticist connected us with. It’s specifically for kids who have a possible undefined Leukodystrophy. It may not help him specifically, but we should try. And if anything, may help kids in the future, as genetics is so fast growing. If you’d like to know more about it, you can visit: https://www.clinicaltrials.gov/ct2/show/NCT03047369?term=Myelin+Disorders+Biorepository&state1=NA%3AUS%3APA&rank=1

For now, it’s getting back in to our day to day routines, and enjoying being home. We have a beautiful little girl who is going through a rough time at Children’s PICU, a lot of what Riley dealt with last spring, and our prayers are with them. So many people empathize with how we live our lives and what Riley goes through, but don’t understand it fully. I know this wonderful family does, and vice versa, and I can’t send enough more good thoughts their way. Please pray for them. Hopefully later this spring she and Riley will get a chance to interact and laugh together, sounds like a great thing to look forward to.

Memories & Resolutions

Long stretches without writing = Riley is doing well and we are trying to live in the moment. Most the time anyway, and it applies to now at least. Writing is an outlet for me though, and I really wish I just had more time to be able to do so. So many “new year’s resolutions”, and I’d like that to be one of them. Although holding hope to making, & let alone one happening, isn’t always likely. For instance, I have many more resolutions I’d love to uphold and make happen. One of them is to become healthier, in general, not only for myself, my family, but Riley in particular. This kid just keeps growing and growing, 42” last I measured! And sure, I’m strong from being able to carry him, but parts of me are also starting to hurt because of it. And yeah, some day that’s just going to keep happening, until I can no longer carry him…but today is not that day, nor is any day soon. So now I have to figure out how to shift my focus from my typical gym-rat routines, into making certain parts of my body stronger to compensate for specific things I’m doing and specific ways I should move. And eating better, taking care of myself, etc. all falls into that category of becoming healthier, mainly for Riley, so I can give him the very best that I can, in every way. And with him in mind, that one will happen. It gets top priority over any other more meaningless resolution.

(Watching the 'Finding Nemo' musical at Disney' Animal Kingdom, he was smiling the whole time)

BTW, how is it freaking 2017?!? How am I going to be 31 this year?! How is my child going to be 4?! Where has the last ten years gone? Chris and I will have been together (dating) 10 years as of May, this year, and married 6 of those years in July. Holy cow. 

(Leavenworth Oktoberfest 2008, over eight years ago!)

It’s hard to wrap my mind around how this year is going to play out, thinking back over last year. We had some of our biggest highs and biggest lows, EVER. It feels like every decision we are going to make, at least for the next few months, could impact Riley and his overall wellbeing. For instance, like taking a walk into town last Friday night to grab dinner at the brewery. It was so cold, and of course the wind decided to kick up as we left the house, Riley looked like the little brother from ‘A Christmas Story’. “I can’t put my arms down!!”, is all I could think once we finished getting ready to go. And thankfully, for many reasons, the brewery was fairly empty when we got there, so not only made it super easy to get a table that works well for us and Riley’s chair, it’s less possible sick strangers. That kind of thing, on top of the freezing cold getting to and from, is always going to be playing over and over in our head every time we bring Riley out of the house. But, we can’t, and won’t live in a bubble either. It’s making those decisions every day that is going to become more and more of part of our “norm”. And many parents go through this, but mostly, they don’t have the factor of life and death being a part of that decision. 

(Happy to be in from the cold, even if it is at the brewery!)

(And back in the cold...)

For instance, this cold/flu season is already becoming “epically” bad. I feel like it started really early, is getting ramped up hardcore now, and will probably last until almost summer time, the way it did last year. So, we get what, like 4 months out of the year of freedom? Gross. Of course, we purposely planned and pushed for Riley’s Make-A-Wish trip to be scheduled before the real start of this season. This is because we have no idea how he will fare, and we didn’t want to plan a trip for the following year, with the possibility of him either no longer being here or him being too sick to be able to make it. So, success, we somehow managed to grab a cancellation spot at the Give the Kids the World Village for the week Chris already had planned vacation (Halloween week), got our non-stop Alaska flights to and from Orlando, and multiple day park tickets to every Disney park, Universal Studios and SeaWorld. Everything planned so quickly by such amazing people, and guess what. I somehow caught a cold, from god knows where, roughly 10 days before we were due to leave. And just like most of us would, I felt crappy, but was “perfectly fine” in a matter of days. I even took EVERY precaution I could think of to NOT give it to Riley…. but being his primary care taker…. those precautions still failed.

(He thought it was hilarious that I was wearing his Mickey masks, and not him, to try and prevent getting him sick)

One week before our flight, he caught it and started getting extra junky. The biggest “blessings” from Riley’s many hospital trips, is the respiratory equipment we now have at home to be able to use daily, and use excessively when he gets sick, to try and help get him through. Between that, and now having access to our palliative care service, and we could call in a nurse, who got him an antibiotic prescribed from SCH pulmonary over the phone, allowed us to still be able to make our trip. Thankfully, this was a minor bug compared to what he can get, and have spiral out of control. We managed to get by for the first time in a long time at home. Every day that week, we were trying to get him better and better and debating if going on our trip was even going to happen, or was remotely safe for him. Last minute call, and any day sooner it may not have happened, but we made the call to go. It was a VERY rough flight for us getting there, due to probably many factors fighting against each other. It was super early, so he was tired and pissed because he was tired, which created more junk, on top of the junk he was getting over. Air pressure and his ears bugging him, made him more pissed, creating more junk, etc etc, SPIRAL. But that’s why we lug all that respiratory equipment with us, and look insane doing so, but it saved him and got him there OK, and once there…he bounced right back and took it all on with a smile! And some coughing, but less as the week went on.

(Loves his wheelies!!)

We were so blessed with this trip and the memories we made. We relaxed and let Riley lay around and nap each morning before heading out and taking on a park, or two, for the rest of the day, with a long time of sitting up for him. Having Nana there was so much better than either of us could have imagined. We would have still done the trip even if she couldn’t have come, I just don’t think either of us would have been able to relax or enjoy it nearly as much. The extra hands, extra Riley help, extra comfort & roommate for Riley, and to have her make those memories with him and us, was a big part of what made it all so special. We managed to get Riley on a few rides, Aladdin’s flying Magic carpet, the Jungle Cruise & the Adventures of Winnie the Pooh, all at Magic Kingdom. He met many of his favorite buddies, but he definitely was unsure of them going from 6 inches to 6 feet tall! I think the way his brain works trying to figure out his surroundings, when we got to do 4 characters in one go, allowing him time to catch on, and ending with Donald, one of his favorites, worked out so well. He went from totally unsure with Daisy, to a huge grin plastered on his face the whole time with Donald. Made my heart melt to see pure happiness in him like that. I truly don’t think he has smiles and has joy like that other when he sees me, or Chris, or his grandparents or someone he really loves and recognizes. 

We came out of this trip a little bit more relaxed in how we can handle his medical issues, and enjoyed not having it always be such a primary focus, beyond the day to day needs. Can’t get away from that. Plus, we got so much video, hundreds of great pictures, an amazing professional scrapbook, plus the two I made, and an extra duffle bag STUFFED full of (mostly) Riley acquired souvenirs! Such smart thinking Nana! Once home, it was kind of an immediate jump into planning and enjoying the holiday season. It was nice to be able to spend both Thanksgiving with both sides (minus Uncle Brad unfortunately), and having Christmas in Vancouver with everyone on both sides. I know Riley certainly enjoyed all the attention! And I must admit, it was nice for this mom to relax a bit and could walk away and let someone else watch and entertain the boy, or give him his feed, change him, etc.! I tried to not think about it the whole time for either holiday, but it definitely hit me on a few occasions that these times and memories, could be the last holiday season we have with Riley, and that he gets to enjoy. In no means do we EXPECT for him to not be able to celebrate them again at the end of this year with all of us, but we are practical in recognizing that there is a chance, and so we needed to make 2016 count. And I think we did as best we could, enjoyed the time, and gave him all the joy and cheer he deserves.

(Doggies protecting the boy)

Ten days into (somehow) 2017 now. I think new year’s resolutions are good for many reasons. Yes, to make and enjoy your life better is definitely one of them. But this is also a gloomy and somewhat depressing time of year with all the hustle and bustle and fun times now settled, with no major event (unless you have some awesome vacation planned in the next few months, lucky ducks), until virtually Memorial Day, signaling the start of the summer season, with more things, in theory, to look forward to. I believe that’s where a new year’s resolution could come in play, to help pass the time and change things up. And I’m sure I’m not the only one who believes that. Yes, it gives you something to do, something to focus on and distract you from the rest of “normal life”. But I also believe it can provide hope. For instance, I want to become healthier for my child, to be able to focus on and move him easier. This in turn almost forces some hope upon me that he will be around for a while, for these changes I’m going to make to be worthwhile. And that’s something HUGE for me to focus on. I know what this season can and will bring, it’s a matter of how I need to figure out and learn to focus on what can be the positives out of it. And that is a new year’s resolution in and of itself.

(Loves his new music table, becoming quite the pianist!)