I’m tired. And I know that this goes for all of us. I see it and feel it all over everyone. We’re sick more often and tired all the time.
Our energy stores are empty and our capacity for patience is topped. Trent is really feeling tired since his experience with the pleural effusion from a few weeks ago. Neither one of us
sleeps very well at all. Trent spends most nights trying to keep himself busy
for fear of what lies beyond sleep and what awaits him upon waking. Breathing is labored during sleep…and waking for that matter. We both awoke terrified last night when Trent had a lot of difficulty catching his breath after a coughing spell. He just couldn’t catch. Lately, a full breath seems to stay just out of reach.
The holiday was a welcome break from the regular, which three of four kids home vegging out with us. We were able to spend some really good time with Trent’s parents, sister and our nephews. Trent loves their little faces and is a pleased-peach when he has a little shadow calling “Uncle Trent…” asking him to make pancakes or ride bikes, doing our best memory-building. We did suffer a little, Trent the most. Things didn’t go as planned with another family situation that was out of our control and we did the best that we could to work through that, but when you are wondering when or if you will see loved one again there’s isn’t much consoling that can be done. We just have to say, “It is what it is” and make our best attempt at being ok with that. With never really having been given any real options with Trent’s initial diagnosis we are relatively used to coping with “It just is.” I do think we prefer “It is well.” We don’t have a choice. It has to be.
We made 9 years married on the 24th, Thanksgiving. We are excited about that day, but it’s strange. For me, the happiness surrounding that day is tinged with pain and sadness. I don’t know how to feel. And I’m ok with that. I think I’m done fighting emotions. They come as they come. I don’t have the energy anymore. I just love him and I wonder how many more anniversaries we’ll have. We made it through Thanksgiving and now Christmas is looming as well.
Hospice Austin has been wonderful. They seem to be able to meet most needs without making us feel like they have one foot out the door and somewhere else to be. It’s quite the opposite and I’m so thankful for them. Just knowing we have someone to call for help at anytime who really cares is a relief.
My thoughts are scrambled and I’m forgetful. We both are, scrambled. I come across projects that I’ve begun with conviction and then moved on from without finishing, only to return to with disappointment at my lack of brain power and carelessness.
In the back of my mind I wait for Ellen, Steve Harvey, Bobby Bones or any other compassionate celebrity conglomerate to show up at our door with a giant paper check, or for one of Trent’s videos to go viral, cementing his legacy in the annals of YouTube history. It’s a strange thing that happens when you see someone who is experiencing the same pain as you on a talk show or in a viral stunt, but somehow their pain is more legitimate than your pain and more marketable than your own as well. It’s not strange, it hurts. Those thoughts of deeply buried, thinly masked jealousy are disgusting, but real and are frighteningly closely related to the same ugly feelings that surface when you hear about a person, any person, receiving a result of NED (no evidence of disease) on their latest CT scan or even hearing the news of a successful, albeit painful, surgery to remove cancer or limb. It is in these moments that we are supremely happy for those who will “beat” this disease, but inevitably that little word creeps into the backs of all of our minds. It’s one we all have bouncing around just out of the periphery of our speech or even thoughts. It is an unspoken rule in this home – don’t ask it. Why. We don’t ask it because we’re afraid of the answer. But mostly, we don’t ask it because we know the answer is not to be given on this plane. We were told that Trent was essentially struck by lightning and there is no reason for his cancer. It just is. So we do the best that we can to accept his diagnosis (even now – it just doesn’t get old) and hold on to hope (very difficult, you should try it), simultaneously living just for today and next week, next month, next year…we have babies after all. I was going to write something about slipping into anonymity and blah blah blah, and the fear of being forgotten but I just don’t have it. I think you get it and if you don’t, it just is, right? Right.
I don’t know what the next few months are going to be like for us. I do know that we have things pending. Lily turns 15 in a couple of weeks (yay!) and needs braces (-_-) which I will need to pay four-thousand something dollars for likely without much help from the other responsible party. That’s the way things have always been and seemingly will always be. Say it with me now, it just is. So, we’ll figure something out like we always do. Trent is having some difficulty breathing at night and it was recommended to him that we get a bed that adjusts and allows him to sit up. For hospice, that means a hospital bed. Can any of you who know Trent imagine him sitting in a hospital bed in his own house? Laughable, I know. It’s really important to us to be able to sleep in the same room and the same bed as long as possible seeing how we accept wayward, weary, short travelers nightly. So, we’re hoping to be able to do some kind of trade-in with the bed that we just bought to help with Trent’s back pain for a bed that can help with pain and is adjustable so that he can, you know, breathe. We canceled a surgery for Cole that was supposed to happen the Friday before Thanksgiving because I was dealing with my own upper respiratory crap and my mommy-power was on super low, half-a-blinking heart. Gavin was invited to start his pre-k program full time – which is amazing, but an adjustment nonetheless. Life don’t stop for _______.
I don’t really reread these anymore, not because I don’t care, but…it’s not easy, so please forgive any typos or convictable grammar offenses. If you’d like to help by sharing or giving here is our YouCaring page. Thank you to friends and family. Always. Acknowledgement and solidarity go a long way in shoring a person up so thank you to those of you who don’t know us personally, but gain something from this little thing we do.
Lastly, even though these past few blogs have been somewhat bleak, we have very happy moments and we really are blessed to be able spend this time together and understand the true value of that time because truly, nothing last forever. The things of this world are fleeting. People matter and how you made them feel. That’s all. #Blessed
To our friends who are doing good things, keep it up and share your goods with us. We love it.
Do good. Don’t ever quit.