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 2nd, 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!
