I love writing. I don't know how much I care for bearing my sole "to the world" (ok my fam, friends, friends of friends, and prob a good chunk of people I've never met), but I'm learning to let that go. Not only do I like writing, but it's turned into a type of therapy for me. Dealing and living with such harsh realities at this age (even though my twenties are officially behind me), would never have been something I expected to come of my life. But I've learned, and accepted, with all my heart, that I would not have been given this beautiful little man if I could not handle everything that came with him. I know that there are no better parents for him than us, we are just constantly learning how to deal, support, teach, and show and give Riley the best that life has. I would probably write more often if not only I felt like I had the time and energy, but could get through one post without some sort of tears.
But since it's now been a few months, and a lot has happened in that time frame, I know updates are always nice. I know that a lot of people are hesitant to ask us how Riley is doing, how we are doing, and what all is going on currently. Yes sometimes it's nice to not be bombarded with those questions, and just be. But other times we can see you holding back. Can always just start with, "do you mind if I ask...". Not only does it keep things real for us, everyone else, but it's something that we've excepted is not going away. We appreciate and love all the support and love for us and our boy. I've certainly learned to be honest through all these experiences. If I'm not in the mood to talk about it, I won't hesitate to tell you and not beat around the bush.
So the last I wrote was about learning to accept that Riley has some sort of progressive neurodegenerative disease, and his life will be short lived, and that we needed to start soaking in the moments and accepting that someday we will have to say goodbye. Which is all still true, but when Riley was in the hospital for his two week run in June last, and was intubated, we made the doctors do anther MRI, so we could have all the information as possible if we were to face another horrible extubation, and needed to make decisions A LOT sooner than we anticipated. Gist is, last August to April MRIs, showed significant progression and cerebral atrophy. But when we got June's done, we found out that August was on the highest tech machine, and April was on the step below that, so comparing isn't easy. June was done on the highest machine again, so looking at all three images, the progression isn't as bad off as we had thought in April. But unfortunately that doesn't change the fact that the progression and degeneration will continue, his disease won't stop. It's just more questions as to how quickly. And now that image is almost two months old! We and doctors have agreed that doing any future MRIs randomly isn't worth the anesthesia and intubation risk. Now if and when...more on the when, he's intubated again from being sick, and a chunk of time is pasted, there is no risk, might as well see IF we can gain any more information on how the degeneration is progressing...and ALAWYS do it on the T3 machine (highest quality technology)!
What we anticipate and kind of prepare ourselves for the worst is that another pneumonia will the be end, and we will have to make the tough quality of life calls. It's not the particular disease itself that will be the sole reason we loose him one day. It's like Alzheimer's, Parkinson's, cancer, etc., the likelihood of the respiratory system failing first is the most likely. So whether that's this flu season, next, or five years from now. Each ICU admission will be filled with anxiety and expecting the worst. That way when he kicks ass like he did in May and June discharges, we will be thrilled to hug him and take him home again once more. But we are also trying to not live our daily lives in this mindset. We are focusing on his smiles, doing fun things with him, giving him different experiences (like his first movie tonight!), and spending time with family and friends. My cousins and aunts and uncles just left days ago from a week long vacation at our and my parents house. We haven't all been together since our wedding, five years ago. And these are the crazy/loving people I was spoiled to get to see at least once a year when we were kids. To have them all be able to make it out, relax and avoid reality together was just what the doctor ordered. Some of them even got to meet Riley for the first time finally. I was so focused on them coming and doing things together, I didn't even think about how it would be when they left. Obviously back to the grind and reality, which is fine, just hit harder than expected. It's a difficult concept to swallow that some of them may have just said their goodbyes to the youngest of the group. But I hope and pray everyday that, that won't be the case.
(Gotta love them😘)
Coming down into reality has been filled A LOT. Riley now is on Providences Stepping Stones Palliative Care service with his own nurse, social worker, etc. They're going to be there to help do what the can to keep Riley home and thriving, and me sane. Also, back to making doctor appointments (some new specialists-endocrinology and nephrology, per neuro's request), am planning other upcoming vacations, and doing random things here and there to do for our monkey's enjoyment. Like tonight we are taking him to see "The Secret Life of Pets". Told him he gets to be a big boy and watch talking cartoon Sadie dogs on the big TV, and I've gotten lots of curious looks from him. Now being his first movie we will definitely have essentials to help his sensory experiences if it's a bit too much (i.e. His earmuffs, sunglasses, blanket, stuffed buddy, nookie, etc). And if the test run goes well tonight, he will be even more stoked to go see Dory soon! We also have a zoo trip in our near future, farmers markets, his first Mariners game, chris' company picnic, a wedding, and the beach if we can swing it. Summer isn't over yet and we plan on utilizing every minute (without over stimulating him and exhausting us!)!
