Thursday, August 6, 2009
Day +127: Know How January Feels???
It's day +127 and the best way that I can describe the mood around here this week is to have you think about how you feel once Christmas is over and you're settling in to January. Not much to look forward too, not much going on and just generally, the doldrums of winter. Well, that's somewhat how this week has been for all of us. We're coming down from the wonderful high of the Reds experience last Friday and it's been tough. Definitely a let down but, totally worth it. We had such an amazing time with the Reds and at the game. The boys have looked at the pictures at least a 1000 times and have enjoyed showing them to everyone that has visited. Max asked me on Monday morning, "Mom, when can we go to Reds batting practice again?" I replied, "Oh, honey. I guess I didn't do a good enough job of explaining to you how special that was! We may never be able to go back to a batting practice." One of my good friends told me to tell him that we won't be able to go back until Alex is a Reds player! Alex is a great little t-ball player right now and LOVES to play baseball in our front yard. Hopefully we will get to watch him taking batting practice with the Reds one day!
We did get an exciting visit on Tuesday night this week from our representatives from Make A Wish. They came to meet with us for the first time about Max's personal wish. We spent time sharing our story with them, they interviewed Max, and Matt and I filled out lots of paperwork. At this point, Max is wishing to go to the NBA All Star game next year on February 14th in Dallas, Texas! It surely would be a dream come true for him to see all of his basketball idols together playing a game. We are hopeful that he will be allowed to travel by then and be in Cowboy Stadium with that many people (80,000)...but, only time will tell. Thankfully, Make a Wish is very flexible so, we can see as things go along how it is looking and adjust things as needed.
Besides that, we have spent most of this week hanging out here at home with the exception of a visit up to West Chester to play with cousins Andrew and Jacob on Tuesday. I am doing my best to get a bit creative and find new things to keep everybody busy. We did take a nice walk this morning with Max shaded from the sun in the double stroller and Alex riding along side us on his bike. Max actually rode the bike back down our street to home which is something he really hasn't done in a long time. He even said, "See, I can still ride a bike!" It was great to see him on two wheels again, peddling along.
Healthwise, Max continues to do as well as we could expect and hope for at this point in the BMT process. His engraftment, which has been a worry for us over the past several weeks, appears to be stablilzing around 88 - 90% which is wonderful. Dr. Davies kept ensuring us that she believed this would happen and now we are seeing it which is quite a relief. We did get the results last Thursday from the initial round of immune system testing that was sent out around day +100. As our Nurse Practitioner put it, "He is right where we would expect him to be at this point...which is essentially no where. He still has a long way to go in the development of his new immune system." It is what we expected to hear but, we have to admit, it is tough to hear that he still has a long way to go. We feel like we have been at this for a long time already and it is somewhat overwhelming to imagine continuing in this way for some time yet. Matt, Max and I have all had our share of frustration this week. I think it is just a normal cycle that we will continue to go through. The frustrations of the process build up over time and every now and then, it just gets to be a bit too much and you have to find a way to get it out. Matt and I had a great late night discussion on Tuesday night that made both of us feel better and sleep well. Yesterday, Max had a good cry which I believe was really much needed. It started over a little spat between he and Alex and it just didn't stop. Eventually he was crying and telling me over and over, "Mom, I'm just so frustrated." Thankfully, I was able to hold it together and just keep telling him that he should be frustrated and it was ok to feel that way. I told him that what he is going through is very, very hard and that there are going to be times when he feels sad and frustrated from all of this and that he needs to tell me about it and get it out. Once he "got it out" and I got him settled back down by rubbing his sweet little hairy back and soft head (about 30 - 40 minutes), he was fine and ready to go again. It was a real release for him and great for me to see him expressing this emotion that I know is there. This is frustrating and it is not fair and it does stink...and sometimes we all need to recognize that and feel those real parts of this process. I am just thankful when all of us do not feel that way at the same time! We have been able to help each other through it so far, both Matt and I to each other and to the kids and many times, the kids back to Matt and I.
Despite the frustration that is a part of all of this, we continue to feel very blessed. I am continually surprised by my new set of eyes in this world. I can't describe how this has changed me. I just know that my outlook on things is entirely different than it was before. The best I can do to describe it is to say that I feel like I have truly simplified my life. I have always desired to simplify my life and I have even spent time reading books and magazines about how to do it. But, what I think I have learned is that you don't need to reorganize your house, simplify your schedule or declutter your closets. You just need to focus on what is really important...every minute of every day. It's amazing how the rest just flows from there. As we hear the "back to school" buzz in the air, we feel a bit sad that we will not fully be taking part in that this year since Max will not be returning to school for some time yet. But, I am thankful for this time with all three of my kids, just hanging out at home, enjoying the simple things, with a very uncomplicated life. It is truly a gift.
More from the Meyer homestead soon....
Peace and love,
Kristi (and Matt, Max, Alex and Ellee)