Posted by Scott in
Feelings, on Friday, March 30. 2007 at
Today, as our nurse told me that when kids go home like this, all of the nurses line up and blow bubbles as we leave, I really almost lost it.
I've only felt like that since about noon today. the closer we get to going home today, the stronger the feeling is. I've been thinking about why, and have come up with a few things:
I stayed at the hospital a lot over the course of this treatment, and my coping mechanism for being cooped up was to befriend or become close acquaintances with most of the staff here on the 2nd floor. What this means is that there is a good chance that I won't ever see these people again. All of them that I know by name, they know me by name, that we may joke about their kids, or my kids, or the weather, or what's wrong with the various things on the 2nd floor. I'm deep-down hoping that I never see them again as an in-patient parent with Asher, but also hope that I periodically run into some of them in the outside world. The other day, the hospital posted pictures of every nurse in the central area on the 2nd floor and it really was nice to just see everyone there and have fond, or even not-so-fond memories of things that have happened. On the board there are nurses that we wanted to have every day and there are nurses that we put on our "do not give to me again" list. In any case, all of them that I met had an impact on me in some way. I'm going to miss the chatting I did here and now need to look at how to replace that with people in my community, or at work, or elsewhere.
Over the last few hours, I've really felt, for whatever reason, that there is a finality to this. I mean, sure, we're done with Head Start... medically. We may never be done treating this disease though, so I can't understand why this feels so... final. I know there will be a hundred clinic visits, numerous MRI's, pokes, dressing changes, and everything else for the forseeable future. Every time we have left, previous to this, I always knew that we would be coming back. I could leave the bags packed, or at least leave everything in an organized put-it-back-in-the-bag place. This time, everything needs to find a place. All of the crafts that Asher has made, or had made for him - all need to find a place, or be put in a box, or gotten rid of. All of the toys that Asher has now need to find their spot in our household. Our three kids can now play together daily again, having fun, yelling, laughing, hugging, getting on our nerves, and being the ultimate joy that they really are.
I've also been "not at work" for the better part of 9 months now. I have done some good work while I've worked from home, or the hospital, or even the office. I also have more to accomplish and besides the clinic visits, I'll be going back to the office where I can resume my job the way that I enjoy doing it. Hard-core and intense. There's so much to get accomplished, especially with a new boss and some VP-shuffling going on, that I could bury myself in work for months... I know that I can't do that and probably for the first time, need to KEEP my family first as everything re-integrates itself. I'll probably need to get on a plane once a month. I'll probably be on the road 2 hours a day. I've honestly kinda liked working in this "weird way" that I have been working and for the most part, it's worked out. It's not me though, and going back "into work" will be nice. If there's one thing, that really Steph and I agree on is that you are most effective at your job when you're actually in the office. Neither of us really agrees that you can be effective working remotely and definately your relationships suffer. Being back "at work" more than I've been should allow me to build back any relationships that I've let lag and get things done that I've always intended.
Overall, I guess I really just don't know how to feel. I can't imagine anyone feeling anything after seeing your child be in the hospital for over 170 days. See you child have a 104+ degree temperature for almost a month. See your child have a 6 inch "hole" in their head. I've been able to take most of that "information" and turn into into interesting scientific stuff, all while loving Asher. There really isn't going to be any more scientific happenings to cover up the feelings now, which i think is why they are pouring out, or at least bubbling up on the surface. Those of you reading this that have some sort of technical job may know what I mean if you've also been in somewhat of a similar situation. It was easy for me to grasp onto the acronyms and big words. I enjoyed learning the medical terms and in memorizing the chemo names and what they did. I also tried to keep track of all of the blood cultures, blood counts, tests, diseases, everything that was going on. I even relished being able to pronounce stuff sometimes better than the nurses and doctors when they had never heard of something that was going on with Asher. I guess there comees a point in which you need to turn off your head because you know you just have to "do this and make it to the end" and go back to being more parent than scientist. I guess my heart finally decided to show up and poke thru to the surface today. anyway....
Going back to what Steph posted a few days ago about this really NOT being over and what people are going to be saying to me as I run into them again. "Congrats, your done.." "How's Asher, I haven't kept up.." "I can't imagine what you've been through"... Sometimes I just want to bring a sign with me that says "yes, we're done" and "yes, he's okay right now" and "I'm okay"... All of those things you say to people who really don't care and are just asking because that's what you do. I'll hold in the real comments for those of my friends who really do care. Those ones that have been reading up on the blog every day and have been sending me emails or IM's at work to check in, separate from everything else going on. There's a few people that I work with that have gone through some pretty nasty bouts of cancer-related illness too. some of them still are. I know that I'll never forget those who were there for me, and those who weren't. I still have surprise at some that stepped forward, and sadness at some that didn't. You really, realize when you go through something like this that your true friends separate themselves from your acquaintenances. And the people that truly care bubble to the top.
who knows what this all even says to this pont. ... Lots of ramblings. I'm not even going to go back and read it to correct anything because then it won't be just stream of conscienciousness writing.
From here on forward, I guess I just have the following to say/think/whatever:
I hope and pray that this treatment has done what it was intended to do... effect permanent removal of the cancer from Asher. I hope and pray that we do not ever need to do any long-term treatment of this disease again. I hope and pray that Asher will learn and grow and play and enjoy childhood as children need to do. There will always be bumps in the road of life, and I hope and pray that this speed-bump that we've hit is behind us and, for a while at least, we can pick up speed and turn on the cruise control (at least a little) as we look toward a 4th child in our life and the start of kindergarten. I am so thankful that we've had a world-class facility in the town we live in. I am thankful for the fact that I've had a loving and caring work-support-team behind me. I'm thankful that I have a strong-willed, intelligent wife who has more common sense than the average person and always sets things back into 'reality' for me. I'm thankful that we've had some really great nurses and some really great doctors. I'm thankful for everyone that has helped out with work, food, childcare, etc. I'm also thankfull that this is the year 2007 and not the year 1957, or even 1997 because of all of the significant medical advances that have allowed us to treat Asher under Head Start III that, at least right now, has done it's job in removing any visible signs of cancer from my son.
congrats. your new life continues...just dont forget, there are lots of us, who are out here, who do in some way understand and are "in your world"....for the ones who have not lived with a BT kid, it is not possible for them-please, forgive them in advance. Life for me after treatment was harder emotionally...I am so disconnected from so many old friends..but, it is so much better in so many ways, especially in my learning to reach out to total strangers, and to appreciate the day to day...just remember the "trite" one day at a time mantra...
Love to all of you...
Mary alice D, PBT list, mom of Lizzie, 6 yr survivor, germ cell brain tumor
(((HUGS))) to you , Scott, to Steph, to Asher and to all of you!!!
I know all of your emotions must be all over the place... he's home and that's what you have worked for for soooo very long!!! I'm so very happy for you all!!!! I'm so glad you can now move on to the next phases of your lives - a new baby, kindergarten (Matthew too!) - never forgetting, always wondering, but moving on! Yay!!!!
I hope you took photos of the bubble parade - for I want to see!
Scott and Steph-
I remember having similar feelings the last day at the NICU with our preemie. That was just for 7 1/2 weeks- I can't even imagine 9 months!!!
Thanks for sharing your feelings both now and throughout this whole journey. I will continue to pray that the cancer never comes back!
I see that Asher is now home! I will also pray for all of you as you physically and emotionally transition back to your daily lives.
God is good- and may He continue to bless your family!