Thursday, June 3, 2010

Day +428: Fun, Fun, Fun

It's day +428 and I wanted to catch up a bit on my blogging. It's been a while since I've updated because we've just been too busy having FUN!!! :) It's been wonderful. Our trip to Disney with Make A Wish was absolutely a turning point in our lives. Since we've been back, we have had more fun and seen more people than I think we have in the past 10 years!

Our picnic celebration and Max's bash at Ollie's Skatepark the next morning were a blast. We had about 250 people come to Beech Acres to celebrate with all of us and every one of us enjoyed it. The boys ran around between the skatepark, the ball field and the playground with all of their friends to the point that we barely saw them! It was kind of a special thing if an adult that came actually got to see Max! He loved it. Being at Beech Acres and seeing Max be able to run around like that, enjoying himself was somewhat of a metaphor of the entire experience for me. We have been to that park many times in the past 18 months to take a walk or let him ride in the skatepark when no one else was there. But, during those visits, I had to tell him that he couldn't play on the playground (due to the germ risk there) or ride his scooter in the skatepark if there were other kids there. So, it was something to be able to see him being him again, with essentially no restrictions there. It did my heart very well.

The party at Ollie's the next morning was a ball too. Every kid that came got out there in the skatepark and tried it out and seemed to really enjoy it! The adults had a great time too, just watching the kids having fun! Many people had not been there before and have told me that they are going to go back and try it again, their kids had so much fun. Of course, Max was in his glory. He was zooming around those ramps just like he used to, with no fear or hesitation. Again, it did my heart very well to see him like that.
Overall, the celebrations really continued the healing process for all of us. My aunt came all the way down from Cleveland for the picnic and she commented that being there really helped her with her healing. I agree completely, Lauri. We are getting there big time.

I do have to admit that the week of the parties was quite emotional for me, which surprised me somewhat. I would find myself crying easily, something that I have not done in a while. I finally took the time to figure out why and realized that it was a combination of things. Early on in Max's journey, Matt and I decided that we had to pull ourselves together and be strong for Max -- that we couldn't cry and wallow in the sadness of the situation but, that we had to do our best to make the most out of every day and stay as positive as possible for him. Thus, I have said many times to Matt that I knew I would be emotional when the good times came. In addition to that, I think I was emotional that week because the reality of Max's situation set in more than it has prior to this point. When I imagined us at the point of having a celebration party in the past, I imagined us being "back to normal". As I prepared for the parties that week, I didn't feel "back to normal". Max's health is still very fragile and we remain constantly on alert with him, in fact we almost had to head down to the hospital the Thursday before the party for a fever (thankfully it subsided and never hit the 100.4 mark where we still have to call and rush down to the ER); he wasn't back to school regularly (just visiting his class a few hours a week); we are still down at the hospital at least once a month to have Max checked out and receive medications; Max remains on significant medication; etc, etc. (you get the idea). What I realized that week, even more accutely than I had before, is that we are never getting back to the normal that we knew before. I have to admit that there was some mourning in me for that old normal, even though our new normal looks better and better all the time and Max has come so far. I was sad that we can't go back to the carefree innocence that we knew before - where we firmly believed that all of our kids would grow old and live long, full lives. We do our best everyday to focus on the positives in this situation and doing that has carried us through this ordeal very well. However, sometimes, the negatives creep in and get you. I think it's important that we acknowledge them and deal with them and then move on. And that's what we did that week.

The week after the parties, Max got up to school three times and really enjoyed it. We even went on a field trip with his class and he rode the bus with them! Then he rode the bus home on Friday afternoon too. It was such a joy to see his smile as he got off at our stop! Alex had his last day of preschool last week - he's now an official Wilson Elementary School Kindergardener (another emotional time for Mom)! We had a fabulous Memorial Day weekend too. We went to a pool party at a neighbors on Sunday and Max swam for almost 5 hours straight! He has always loved swimming but, I think there is something even more exciting and enjoyable about it for him now. My theory is that after you have been deprived of something for a period of time (as Max was with full body immersion for 10 months while he had his central line) it feels even better once you can do it again and you just can't get enough of it.

Yesterday was Max's last day of school. He went up to school for the Field Day fun on Tuesday and then went yesterday afternoon and again rode the bus home. Our neighborhood has a fun tradition of having the kids throw water balloons at the bus stop and then jump in a neighbors pool with their clothes on. Max was up at 5:30 am yesterday in anticipation of this fun! He was all smiles all day. I had to tear him out of the pool after almost 3 hours yesterday to get home for dinner.

Watching Max have all this fun is truly miraculous. Often I can't even believe that it is the same kid that endured so much this past 18 months. If you didn't know what he's been through, you would never know to look at him in these situations, having a blast. It's a dream come true. A real life miracle. We are just enjoying every minute of life now and having as much fun as we possibly can.

As always, we continue to feel eternally indebted to Cincinnati Children's Hospital and all that they have done for Max and our family. We think often of the other families that are just embarking on or in the middle of journeys like we have taken with Max. Our mission with Max's Meals is gaining momentum everyday and we are hard at work to continue providing comfort to those families currently living at Children's. The Pepsi Refresh project could provide us with some wonderful funds to further this mission. Please vote today and everyday until June 30th to help Max's Meals win! Just click here to vote:

Thank you for your continued love and support. We feel so blessed to have had such a fabulous support community by our sides during this difficult journey and look forward to continuing to enjoy life with all of you as we move forward.

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

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