As I lie awake those nights, being open and raw comes easy. Of course it does, I am safe in my own head, in my bed, and am supported by the strongest person I know in the world (the strongest even as she sleeps!). I take deep breaths and can eloquently dictate my fears and worries and know as soon as I can, I will let them out. Then morning comes, and in the light of day, those fears that I felt I could tackle seem bigger than I am, and for another day, they win. This year, I didn't set any resolutions, but rather an ideal. My ideal is to be as strong on the inside as I am on the outside.(like so many of my friends have done this year...you have all inspired me with your open and raw feelings to your realities) There is that small part of me, every time I hear someone say I have it all together, that wants to shout that indeed I do not! I do alright, yes, but I feel I could do more. And that's where this post comes in, and this is my first step in finding my ideal inside.
This past year, though full of smiles, love and laughter, has been riddled with uncertainties. I have had some bumps within my personal life as well as health, (diagnosed with hypothyroid, sprained SI joint, and currently a hip pull that is taking months to heal!). The biggest difficulties have been around Gabby's health, as am sure you all may have guessed. It is time to set aside those fears, and fight through my initial reaction to just say never mind, all is good. This is where I always struggle, for once you figure out how to access that cloud of feelings, and they aren't protected anymore, it is all quite real. Sometimes I prefer to ignore the real :)
In a small nutshell, Gabby is still undiagnosed. There are speculations here and there, but nothing so far has come in definitive. Our team here in Seattle has been working hard at trying their best to solve my beautiful mystery. This summer, during one week, we sat down with her research geneticist and her neurologist in 2 separate appointments. For as much as the appointments were filled with the same conversations, we were also made aware that given her worsening scoliosis contributing to breathing issues, seizures that were increasingly difficult to control, and her long hospital stays leaving her a little weaker every time, we needed to be prepared she may be with us only a year or 2 more. Even though there is no diagnosis, her progression follows a somewhat established curve. I was prepared for the heavy conversation with the research doctor, but not so much with her neurologist. He and I have a routine when it comes to our appointments. I blab about what I see, ask my questions, share some stories then he takes it all in and responds with his suggestions and we share a little laugh and we are on our way. This time was different. He came in, and sat in front of me and spoke first. I knew then, this wasn't my usual check in appointment. I could read on his face, that we had some things to discuss that would be hard. While going over her EEG from the June admit, I interrupted and asked about some periods of no activity I saw on the screen. I told him I was talking to the nurse and noticed on her screen, all 4 lines were flat....As much as I was prepared in my head for the answer, I wasn't prepared to have it confirmed. Those flat lines mean no activity.... she apparently has had short stints like that in previous EEGs, but these were longer and more frequent. To this day, 6 months later, I still can't fully grasp that information. And in the grand scheme of things, I am not sure what it means, only that is part of this overall progression and something to use as a tool in trying our best to figure her out.
These discussions eventually lead us to have a care conference with our support team while Gabby was inpatient in the fall. This conference was initiated by Gabby's dad and myself. We knew it was time to sit down and attempt to figure out all that hard to figure out stuff. Our desire was to talk with these people who know us and know Gabby, during a time where we could be honest with ourselves, without the distractions of being in THAT moment. It was weirdly uplifting. I went in the room feeling heavy hearted and overwhelmed, but left feeling very supported, educated and like we will be surrounded with nothing but respect and love. I know that entire conversation could have gone different. I know for so many others it probably has, and that just again makes me feel like we are so extremely lucky to be where we are. These relationships with these caregivers are ones I know will stay with me through my life.
This news, this news wasn't news, that's just it. I always knew it. Always knew our lives wouldn't include so many things parents and children get to experience. Yet this was the first time, since the NICU doctor who transferred us to Children's when Gabby was 3 days old told Greg and I she didn't think Gabby would survive the night, that a timeline had been placed on us. So it became front page news in my head and heart. On the outside I made it all grand for Gabby and the family. Many times we went and did, even though I knew it was too much for Gabby, but we had to try. Right? Like dragging her, wheelchair and all, onto the beach in Seaside this summer. I just had to get her to the sunset and her toes in the sand, even if it meant dragging her through the sand dunes at my own back's expense. She needed that opportunity. I needed that experience WITH her.
I mean, what's a life on the couch with no experiences? Where I struggle internally is, what's a life full of missed experiences because you are unable to be present while in those moments? Those struggles earlier on were fleeting. I wouldn't let them take residence up in my head, but you can only take so many disappointments before the questions outweigh the answers. Then the bitterness comes back, and it gains strengths with each wave. Then they crash on you, like while in the bathroom administering diastat, while once again missing out on something, they crash through in tears you can't stop. Tears you are willing to go away because you know they aren't doing any good. What good comes from being mad and angry at something you can't control? Then you realize, it sucks. It isn't fair, yes I know life isn't fair, that's not what I mean. I don't feel I deserve everything to always go right, or be easy, or work out. But at some point, when nothing goes right, nothing feels easy and you can't remember the last time something just worked out, that's what you are angry at. All the planning, and rearranging to give Gabby the opportunity to experience something she would enjoy and time with her family, and none of it ends up feeling like it matters. You want to blame something, or someone....you want to yell and scream, but to who? To what? and that vicious cycle of bitterness and anger continue. There comes a time when you can take a step back and put that nonsense in its place, and I am good at that. Too good. I forget it is there until it sees the tiny crack. I am hoping that by being more transparent here, and allowing my bitterness to flow out, it will flow away. The seams can heal, and I can be strong again. It is so hard wondering if the next crack will be the one that brings you down hard, and you know you can't be down for long. My ideal is to tell myself it is OK to be down at times, to be weak, to be vulnerable....to deal with those feelings because each time I get up, I will be stronger. I will be healthier. I will be on the inside what I show on the outside.
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