Tuesday, June 28, 2011

Day +818: Some Leaps

Today is day +818 for Max and he continues to do well. We have not been back to the hospital to see Dr. Davies or have a CBC/labs drawn since my last post and I believe that is a first!!! An entire month, hospital free!!! Wow! Progress. We are now on an every-other-month schedule so we don't even have to go down until July 22nd! It's wonderful in so many ways and scary in so many other ways!

I wanted to write tonight because there have been some neat things going on in our lives and I truly feel like we have been taking some leaps lately. By that I mean that we have been baby stepping back into reality for over a year now, taking things one small step at a time, adding in more and more activities, more and more reality, little by little. But, suddenly, we are beginning to make some bigger steps, some leaps, and it is pretty exciting. It's also pretty scary and I have to admit that I have been full of emotions lately. But, onto the leaps...

Last week, Max and Alex spent 28 hours playing basketball with Xavier University coaches and players!!! Yes, you read that right...28 hours!! They attended the REAL XU basketball camp. Last year, you may remember, they went to the Little Dribblers XU camp which was only one half day long. They loved it and have been asking me about attending the real four day, all day camp this summer ever since. So, Matt and I thought about it a lot and decided to go for it. We were concerned about Max's stamina...I mean, it was 7 hours of basketball every day for four days in a row! To me, that seemed like a lot for a kid that didn't have a bone marrow transplant two years ago! We were also concerned about little Alex since he hasn't been away from us all day yet, given that his kindergarten was only a half day this past school year. But, we knew that the two of them would be together and that it was XU basketball, their passion. Given that, we knew they would persevere! And they sure did! They LOVED it!

Each morning when I dropped them off, Ellee and I would stay for a while to be sure they were settled in (in fact, we were usually the last parents to leave). The boys never looked back...I don't even think that they knew that we were still there each morning! They both quickly made new friends on their teams and got to know their coaches and played their hearts out. The highlight of the camp was the first evening, Monday, when I came to pick them up. Alex was the very first camper choosen as "Camper of the Day", an honor bestowed on the hardest working, most enthusiastic and cooperative camper in each age group, each day. He got to play a game they called "Go For It" where he had to make baskets from different shot lines, deciding whether to move on and "go for" more prizes each time he made a shot or stop and keep what he had already won. He ended up going all the way and sinking all three of his shots to win ALL the prizes!! The campers all cheered "you the man, Alex" and he was all smiles! It was fantastic to see him get the kind of recognition and self-esteem boost that he so deserves!!

So, onto the leap part of this camp experience. For myself (and Matt) this was HUGE! We have left Max at school all day, obviously, but only after extensive conversations with his teacher and the administrators at his school about where things stood with him, what should be done in an emergency, etc. In this camp situation, I pushed things at the beginning of the week to be sure they knew Max's history and his current status and that someone would be watching over him each day but, that was it! I had to leave him with people that I did not know and that did not know him well at all. It was scary and each day, to be honest, I couldn't wait to get there and pick them up, just to know that they were alright. I had to tell myself many times each day that I need to do this, I need to let him go, I need to let him have his life back. But, it was hard. It was a leap for all of us!

Now for the other big leap that we have coming up - I am returning to work at GE. It's been over 2 1/2 years since I left there, essentially overnight, to attend to Max's medical situation. They were extremely gracious to me and left me on a leave of absence for almost 2 years of this time, not even filling my position. You may remember that last fall, GE called, asking if I was ready to return for my 20 hour/week job and, in honesty, I said that we just weren't ready yet, that we didn't know what the school year was going to bring for Max and that we just needed more time. I knew that I could not commit at that point to something outside the house. Thus, last fall we officially parted ways and my job was posted.

However, in March, my former co-worker, now the person running the Ecomagination team in Marketing that I had left, called. They had not been able to fill my position and he wanted me to come back. He told me that they were willing to offer me whatever flexibility that I needed to make it work to return. Woah!! I was awe-struck. I had just settled into the idea of being focused on home here for awhile and, all of a sudden, this opportunity. So, Matt and I took quite a bit of time to think it through and ultimately I decided to "go for it". I feel it's an opportunity that I cannot refuse. I loved working at GE for over 13 years in the past, especially at the Eco job I had left. I was finally following one of my personal passions in my work, learning lots about what was going on in the eco world and how GE, a maker of aircraft engines, was adapting to it. It was extremely flexible before and they were offering to make it even more so if I needed, to make it work.

So, July 18th, I will be heading back to GE, part-time, to my Ecomagination Marketing Program Manager role. I'm starting back very slowly for all of our sakes. I'll be working just 10 hours a week, 1 day in the office and the rest from home, through the summer and late into September. Once the boys are settled back at school, I'll move back up to my 20 hours/week and go out to the office 2 full days. I have worked it out with my wonderful boss to be able to get the boys on the bus each morning for school so, I won't get to the office until about 9:15 or 9:30. I am hoping that it will be the perfect fit for all of us.

Obviously, this is a leap for us. I am filled with mixed emotion. One moment, I am thrilled to be heading back and anxious to get started. Another, I am sad that I will not be focused on the kids and Max's Meals. But, overall, Matt and I believe that this is a perfect fit for our family at this point in time. We are ready for this leap. We are ready to "go for it" and give it a try. I am ready to have some of the real me back!

At one point in time, Matt and I thought that if I went back to work, it would be too "normal", like we hadn't learned anything from our journey with Max or changed our lives as a result. However, more and more lately, I have come to realize that our lives are totally changed as a result of Max's journey. Every moment, I think so differently than I did before. I truly realize what a gift that each and every moment of life is. I do my best to take my worry, which I must admit is there constantly, and turn it into love and life. I don't dwell on it. I live in the moment. I also realize just how much control each of us has over our own behaviors. We cannot control what happens to ourselves, only how we react to it.

I realize that our experience with Max has made us view many things much differently than our friends and peers and sometimes that is tough. There are just a lot of everyday things that we don't worry about...they just don't matter to us. At times, I really do feel like a new girl in town. We were so out of the loop with our friends for so long and now, we can feel so removed at times from "normalcy" still. It can be a challenge. I also realize now just how difficult that the past couple of years were. I honestly don't know if we will ever do anything as hard...I sure hope we won't. These revelations give me so much strength and confidence. I feel like I can do anything I set my mind to and I believe that Max does too.

To make sense of all this rambling, the other big leap that I believe is happening right now is that Matt and I really feel like we are beginning to navigate the world of BMT survivorship with Max, Alex and Ellee. As a family, the reality of the past two + years is sinking in and we are beginning to come to grips with the fact that Max, and all of us, have a path ahead of us as well. For so long, we thought that we just had to get Max through this BMT and get him well. Now we are realizing that was just the beginning of this new journey for our entire family. We have all been impacted in so many profound ways through this experience. With all this in mind, Matt and I recently made plans to attend a BMT Survivorship Seminar in September to help us learn more about the physical, psychological, social, learning, etc. impacts of this BMT process on Max and our entire family. I am sure that it will be extremely helpful to us and very enlightening.

I am really going on and on tonight with this post and I apologize. There has just been a lot in my head recently and I wanted to share it. We have been taking some big leaps lately...big leaps toward a real future for Max and our entire family and it is awesome and, at the same time, somewhat scary.

Beyond all this, things have been exciting and busy with both the hospital and Max's Meals. The video that Max and I made a few months ago for Children's was recently released for use by new patients and their families. You can view it at http://www.cincinnatichildrens.org/visit. Max is only in it for about 2 seconds, unfortunately but, I did get a bit more time than that! Those of you in Cincinnati or that supported us in the Cincy Walks for Kids walk for Children's last year will be seeing lots more of us too! We were selected to be the featured family for the Walk this year so, our story will be in many of the publications from the hospital (and probably the picture at the top of this post) leading up to the event in October. We'll be pulling a Max's Mighty Mob team together again soon to walk that day so, stay tuned for more info on that fun! Max's Meals has been keeping us busy as usual too. You can read all about our latest ventures on our website at www.maxsmeals.org. We have several upcoming activities that we are looking for volunteers to help with so, please let us know if you are interested!

We would like to ask all of you for some special thoughts and prayers tonight for our dear friend, Tony Merk. He has been through such a long, difficult battle and it just wages on for he and his entire family. Our hearts ache for the suffering of Tony and his family and we pray everyday that they will experience a miracle of healing as we have with Max. You can follow Tony's journey with us at http://www.carepages.com/carepages/TonyBoy. We love the Merks!! Pray ~ Hope ~ Believe for Tony!

Thank you for continuing to check in on us and keep up with our journey. We are thrilled to be sharing these leaps with you all tonight and hopeful that these great steps will continue long into the future.

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

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