the amazing adventures of carson and kellen: Never as expected.

Monday, January 1, 2018

Never as expected.

We are back home and have been for several days...we got home late on Wednesday. I'm in a better place today but I am still processing the information and the day of Carson's surgery. I don't really know what to make of it...but it wasn't anything that I was expecting and as much as I told myself I wouldn't get my hopes up (because the crash, BURNS!), I did. Little be little, I began thinking this might be Carson's break, this might be the grand finale to 2017, this might be another wonderful Christmas gift, God works miracles and we are going to see one...Carson was going to get his trach out...but the news we got was anything but that. His airway looked more swollen, more closed off than 7 months ago. They said, he must be getting sick (and yes, he had been sick but not an awful sickness)...some of the words they used just didn't match up with the Carson I see each day BUT bottom line he is not ready to take his trach out. Ugh! They left us with telling us to come back in SIX months, to do ANOTHER sleep study, ANOTHER scope and then we will see. Yes, there are things they can do to help open up his airway but really more surgeries are not ideal at this point (for various reasons). Really we left with no real good answers, no great plan, just a big, fat WAIT! (I kinda hate that word...I wanted to scream and yell and kick things and use unkind words directed at...I'm not really sure...maybe the unfairness of life, the disappointment, my lack of control regarding the outcome). Yes, I know, all kinds of character building things are learned in 'waiting periods,' but frankly, I'm over it. ;)

There is no greater pain in my book than watching your child suffer, to see their disappointment, their pain and not be able to do anything to take it away. Carson was SO excited when I told him their was a possibility of getting his trach out and the disappointment I saw on his face afterwards when I told him he wasn't getting it out that day, broke my heart. But, in true Carson fashion, he bounced right back...right after disappointing news, right after anesthesia (& feeling icky), he had a smile on his face (maybe with the help of a new toy ; ) and was playing. So I will take Carson's lead, and slowly stand back up, smile, and continue to persevere. Persevere in prayer, prayer for healing, prayer for a miracle, and I will not give up. I will hope again and believe that all things are possible with God, that God has come to heal, that Carson will get his break. And thank you, again, for your endless prayers, prayers for Carson and the doctors and our family. Much love and happy new year! Maybe 2018 will be the year Carson gets his trach out. And even if its not, we will focus on the things we have and are so very grateful for. I was reminded of that in so many ways in the last few days...#1 we HAVE Carson, but not only is Carson here with us...he is doing well...he is able to run and play, he is able to learn (and is doing well in school), he has a smile that will light up your heart (& the room), he can give some of the best hugs, he has some of the silliest (I mean, best) dance moves, and he is ours!

And in thinking about the many prayers that have been answered, Carson did amazingly well with the anesthesia on Wednesday...the best he has done in years. And later that day, he was asking for and eating all sorts of things. Yes, CARSON was eating all sorts of food...we may or may not have had ice cream twice : )

Here's to a wonderful 2018...full of love and laughter... and HOPE!