Baseball and Mother's Day

We've been fulfilling so many fun things on Max's bucket list and I got a message from a huge Krabbe advocate who has created the Team Krabbe Strong Facebook page, John Neal.  He told me that he had contacted the Arizona Diamondbacks about Max.  They all were so touched by his story that they decided to invite us out for an amazing experience so that we could fulfill some of his bucket list items - going to a baseball game, meeting someone famous, meeting a mascot and playing catch.  We were concerned this past week that we wouldn't make it when suddenly Max came down with a fever on Wednesday and it spiked to 103.  His baseline continues to change...he's slowly losing things but we also knew that we couldn't push it.  Luckily, while a bit fussy on Friday, his fever finally broke and we were destined to go to the game on Saturday.  The game started around 5:20 and they wanted us at the ballpark at 2:30 so we could have an amazing day.

I had the opportunity out of college to intern one season at the Arizona Diamondbacks in their game operations department where we had the opportunity to get on the field for promotions, interact with the players, etc.  But this time is was special - going back after almost 10 years (I can't believe it has been that long!!) was awesome - but it was an even greater experience to be on the receiving end of things and to experience it with my family...for Max...all because of Max.


We started meeting in the amazing Dbacks lobby.  We were greeted by Paige in the community relations department and she had jerseys for the kids, a teddy bear for Max, a hello kitty bobble head for Emma and lots of baseballs to get signed. We went onto the field for their batting practice and got to take it all in.  A normal day in May in Arizona would usually have the roof closed (hot!!) - but luckily we had a day in the 70s and got to be at the ballpark with the roof open. It was fun watching all of the players fielding...hearing the crack of the bat and watching the ball sail into the stands. I missed this...I love baseball.

They led us into the dugout to get some family pictures.  I shifted Max and he cried - these days whenever you laugh, shout, breathe, move him...it takes him a bit to calm down and he tells you all about it (he was very jumpy unfortunately that morning so we didn't know what to expect for the day).  While we were calming Max, the manager of the Diamondbacks, Chip Hale, came over and talked with us. He thanked us for being there and said hi to both kids.  He asked Emma how old she was and asked if she was going to be a ball player some day.  She of course replied that she would be lol.  And luckily she didn't tell him she was 18...that she was 3- I think she's finally getting that one correct.  We then took some more pictures and Emma kept crawling up to the top of the bench.  She also put her glove next to one of the ballplayer's gloves.  It was pretty funny to see the size comparison.  We mentioned while in the dugout that she is going to expect this every game - what an awesome experience.  We watched the players go in and out and got to watch batting practice from inside the dugout - so fun!

After we came out of the dugout, we were standing and watching the guys take batting practice.  Chris Owings (2nd)  ran out onton the field next to us and said hi to Emma and asked her if she wanted some bubble gum.  This was a new experience for her but she loved it and gave him that flirty grin that she always does.  For the next 10 minutes all she asked for was that bubblegum so finally I gave in and let her have it - she's never had bubblegum before.  She put the whole thing in her mouth and had baseball "chew" in her mouth - clumped in there with a big bulge in the side of her cheeks.  She grabbed her glove and was ready to run out onto that field if we had let her. Max also brought his glove and one thing we had on his bucket list was to play catch.  We weren't expecting for his first game of catch in his life to be with Aaron Hill! He came over and asked if Max wanted to catch a ball - it definitely was pretty simple...he dropped the ball in his glove a few times and Josiah dumped it out of Max's glove and into Hill's.  BUT it was awesome.  Max got to experience this with his dad - something any kid would love.  To play his game of catch with a professional athlete and his dad on a major league field is something truly special.  You can tell that Aaron Hill is a family guy - he was so good with both kids and asked Emma what her favorite kind of candy was - in which she replied..."all of them." So he ran into the dugout and brought out a bunch of chocolate for her (after permission from us of course).  It was very neat and she enjoyed eating it throughout the game.  He also wished us the best with Max.  Poor Max was alert at some moments and sleepy other times.  It was a lot for him to take in and he was sensitive on top of it all.  Hill signed a ball for us and ran out onto the field.  Class act and he seemed very happy to be able to play catch with such a special little boy.

They let us get closer to the batting cage and there was Emma, hands on her hips telling the guys when to swing and "good job".  Tuffy Gosewisch kept talking to her and she kept telling him "good job" after he was done taking a few swings.  The guys definitely thought she was cute and thought she could be a future manager :)  Paul Goldschmidt also came over in-between at-bats to say hello, wish us well and sign a ball.  And he of course made the comment that he liked Emma's shirt (thanks Kasey!!). He's been such a big part of the dbacks program so it was very great to get to meet him.

We thought we were about done with the day after getting to watch some of the team hit some balls out of the park when Cliff Pennington came up and said hello.  He chatted for awhile with both kids and was very gracious as well. He asked a bit about Max - whenever anyone asks about Max, I'm an open book and want to educate - I didn't go crazy like I do with some doctors but I told him kind of what happens.  It was great to be able to share about our special boy and we thanked him for taking the time to recognize him and give him such a special day that we will treasure as a family forever.

But it wasn't over yet.  Baxter came down to the field and took the time to interact with both kids.  Max was crying when he came over initially. But Baxter approached him slowly and gently stroked his hand.  Max stopped crying...I then proceeded to ask Baxter if he could come to our house every day to soothe him.  I think this was actually Max's favorite part.  He was so alert and calm.  Josiah and I were both so happy.  Baxter then proceeded to play around with Josiah and took his hat in exchange for his own - a bobcat has a huge hat and the hat had  holes for his ears.  Emma thought it was funny and Baxter tried Josiah's hat on his head but it was too small...so he put it on Emma.  It was a great way to end our on field experience. They gave us some amazing seats to enjoy the game - 2 rows up from the dbacks dugout.  We lasted through 6 innings and both kids were spent and both slept on the way home.  Thanks so much to Paige and the rest of the Community Relations Team at the Diamondbacks for going out of their way and making our experience one that we will never forget.  And thank you for allowing our precious boy to do something in his lifetime that we never imagined would ever happen.  We are forever thankful and grateful.  What an amazing organization!  And thank you to John for taking the time - not even knowing us personally - to write the Diamondbacks and help set this up for Max.  We are so grateful and you have such a kind heart.

These experiences are bittersweet.  It is amazing to get to do some incredibly fun things but we also know and it puts into perspective that our time with our son is limited. We don't know when things will turn like they did this past Wednesday, and we don't ever know if they will turn back.  I found myself sitting and watching the game with tears in my eyes.  How many games will we enjoy as an entire and complete family...maybe only one...maybe lots but it was tough.  I watched these little boys running to the dugout and asking the players for the game balls - Max will never have that opportunity.  When everyone cheered for an amazing play - Max cried...the noise...the startle...I know everyone around us was thinking...why bring a baby to the game?!  Because this might be his only one...

This Mother's Day has been the hardest yet for me.  I don't know why, but I have been extremely emotional.  I was spoiled with this experience for Max and by my husband and kids with gifts and flowers but it was tough not knowing the future...looking at our present lives and seeing how crazy things are with Max, with new equipment and experiences but special all at the same time.  I think the hardest part is that I miss my mom more this year than ever before.  She was always there to help me understand why...to help me through things. Don't get me wrong - we have support all around us with all of our families and numerous friends...but when something happens...you usually want your mom. I know at times I look at Max and think about what he could he be doing, but Max is special the way he is.  He is perfect in my eyes.  He has taught me so much about life and love.  He has shown me the kindness of complete strangers.  He has helped expand our friends and family to people we never thought we'd ever meet.  He has given us some amazing experiences.  He is Max...just perfect.  But it doesn't make things easy. 

Thank you to everyone who helped make this an amazing experience.  To be able to let our boy live is all that we could ever ask for and through these experiences, he is living.

Thank you for your continued love and support for our family. 
~Allison

PS - for more pictures of our experience...be sure to check Max's Facebook page soon!