I know, I know. It’s been far too long since our last blog update. So much to tell…I’ll try not to drag this one on too long. ;) I think this one is going to take a different turn than I originally planned due to some recent events. My thoughts seem to be so scattered – let’s see if I can make something coherent out of them.
I’ve been thinking a lot lately about the fact that it’s been six months since I last wrote and have been feeling the guilt of not letting you know what’s happening in the lives of the Mulder family. I’ve been trying to put together in my head exactly what I want to share with you besides just an update on how the boys are doing. I have to admit that finding the time to just sit down and write is a challenge with our crazy kids and schedules and most nights after we finally get them to sleep we’re exhausted and just want to unwind for a few minutes before heading to bed ourselves to do it all again the next day. However, two recent events have sparked many thoughts about the blessing of children and the time we get to spend with them and that is the path that this entry will follow.
Last week I was having a conversation with a teacher at school and she told me about a middle school-aged girl in our district who is losing her battle with cancer. I don’t know the family or any of the details, but apparently they just found out six months ago that she has cancer, and now hospice has been called in. All I could think of was the pain of losing a child that quickly. Six months. I couldn't imagine because, you see, although my children have a disease that will eventually take their lives, our journey is happening so slowly.
And then there was the text I got on Saturday night. It was the weekend after Thanksgiving and breaks from school are always challenging for us. There is no relaxing when Jarod is home. His mood swings are numerous throughout the day, he is in nearly constant motion and activity and requires perpetual attention from one of us. I was sitting in bed with him (a nightly necessity) helping him get to sleep and selfishly thinking that once he was asleep I could finally have some time to myself. Just as his breathing began to slow and I could tell he was drifting off to sleep, my phone chimed. I looked down to find a text from a cousin in Florida telling me that another cousin’s two-year-old son had drowned that evening. I think I stopped breathing for a moment. I sat there in that dark room, with my own son next to me, warm and breathing, and immediately felt a sense of guilt for ever complaining about one darn thing that we go through. How could I, despite the hardships of parenting special needs children, take for granted the time with them with which I've been blessed?
A child lost in months. A child lost in one day. Vivid reminders that we are guaranteed nothing. Not today. Not tomorrow. And reminders that our children are not our own. They belong to our Heavenly Father and the wonderful thing is that He loves them infinitely more than we could ever hope to. That is unfathomable to me.
So, how are the boys doing? My new answer is “as well as they can be” – and that is the truth. But, you know what? They are alive. They laugh and run and play. They are emotional and defiant and push all of our buttons. They are sweet and shower me with hugs and kisses. They are here with me, and for that I am grateful.
I promise that in the coming weeks I will update again on specifics about Jarod and Caleb, the struggles we've been through and the joys we have experienced. But, for today I want to leave you with a reminder to cherish what you have. I would be remiss to let the opportunity slip away. In this holiday season and the excitement and anticipation of Christmas – don’t forget what’s really important. I can guarantee that it’s not spending oodles of money on gluttonous gift-giving and receiving. It’s not about the perfect party and checking everyone off your list. It’s about love and togetherness. It’s about being truly thankful for what you already have and treasuring the time we have – right now.
In your prayers I would ask that you remember my cousin and her husband and their extended family as they lay to rest a boy who left this earth far too soon.
Fly high, sweet Jake. Light up heaven with that beautiful smile of yours.
Jarod Gets His Wish From the Make-A-Wish Foundation (aka A Happy Post, For Once)
So, after waiting for over a year (thanks, NHL lockout…), Jarod finally got his Make-A-Wish experience! What a great foundation MAW is. We have so many great memories. It went something like this:
On Friday, March 29, we travelled to Detroit in a car that MAW had rented for us for the weekend. We were put up at the Courtyard by Marriott and escorted by limo (thanks, James!) to and from the Joe Louis Arena on Saturday and Sunday.
On Saturday we were greeted by Christy from the Red Wings and Brianna and Leah from MAW. We got to tour the lower level of the Joe and then made our way to the entrance to the rink where we waited to meet Jimmy Howard! During our wait we met Chad (cameraman) from Fox Sports Detroit and got Jarod mic’d up for the morning. Jimmy came out fully dressed for practice, along with Todd Bertuzzi, but as soon as he approached us Jarod went into full-on nervous mode. Just stared at him, chewing his fingernails, and then started to walk away from the rink (doing his nervous/mad grumble – mmmmmmmmmmmmm). It took us a good ten minutes (and Jimmy offering him a bottle of yellow Gatorade) before he finally got the nerve up to go out on the ice. Once he did he loved it! He tapped the puck a few times into the net, passed a couple to Bertuzzi who knocked them in, and then finally (after Jimmy moved the carpet out of the way) shot a decent one in. We didn’t see his famous driveway slapshot – he was just too nervous!
After Jarod getting to “shoot on Jimmy Howard” we were taken past the locker rooms and brought right to the team bench, where we got to watch the rest of the team practice. Jarod was on cloud nine. Some of the guys came over and chatted quickly as they got a drink. Jarod got to see what color Gatorade each guy drank (an obsession of his). Jimmy had started the practice with a yellow Gatorade, so when he came over at one point and took a swig of blue Jarod asked “Jimmy, you like blue now?” to which Jimmy replied jokingly “What? It was just closer!” With about 20 minutes of practice to go Coach Babcock asked us if we could scoot down as far as possible and then Jarod got to sit right next to the guys as they intermittently rested between drills. My favorite memory of the day is when Henrik Zetterberg was sitting right next to Jarod and Jarod reached up and put his hand on his shoulder and said “Hey, Zetterberg. Did you get in a fight?” to which Hank replied “A fight? No, it wasn’t me. It wasn’t me. I’m not a fighter.” Priceless.
After practice we were escorted to the locker rooms. As we entered, Jimmy was signing his goalie stick and gave it to Jarod. It says “To Jarod, Best Friends Forever. Jimmy Howard #35”. (Jarod held onto to that stick for the rest of the weekend…) Jarod got to sit next to Jimmy and ask him questions as he got out of his gear. (“What did your mom pack you for lunch?” “Oh, I eat lunch here”). Did I mention that Nik Lidstrom and Tomas Holmstrom were visiting that day?? They were hanging out in the locker room, too, chatting with the guys. J
After practice was done, we waited in the hallway for some final goodbyes and autographs on some items. We got nearly the whole team, including Lidstrom and Holmstrom, to sign the stick and some other goodies. We got pictures with many of them. Hopefully we’ll be able to get some pictures together soon from all of the cameras that were there and put them up on facebook.
As if that wasn’t a cool enough morning as it was, Jarod had a live mic hooked to his shirt and a cameraman from Fox Sports Detroit (Thanks, Chad!) followed us around the entire time. Jarod’s story will be a feature on an upcoming episode of “Wingspan” which is a Fox Sports Detroit production that goes behind the scenes with the Red Wings. We’ll be sure to let everyone know when it is supposed to air! (Of course, that meant some camera time for Mom and Dad, too, which is always a little nerve-wracking…)
The next day we were treated to a limo ride back to the Joe for the Red Wings/Blackhawks game. We had the special honor of sitting in the penalty box during the team warm-up before the game. It happened to be Gordy Howe’s 85th birthday that day, so there was some special celebrating and the team all wore the number 9 on their pre-game jersies. Jarod was in awe. Just sat there at the glass pointing out all the players as they skated by. Did I mention that he knows every player by face? He doesn’t even need their number. Even after practice on Saturday he knew who everyone was, even when they were dressed in jeans and sweatshirts. J I wish I could say the game was awesome and the Red Wings won, but they got demolished 7-1 (at that goal was scored with about 30 seconds left in the game)! Jarod didn’t care. He had a great time just watching them play.
So that was Jarod’s wish! For all of the struggles and obstacles Sanfilippo Syndrome has put into our lives, we have ironically been afforded some happy memories because of it. We will never forget that weekend. We need to give a big shout out to Erica at Make-A-Wish Michigan for coordinating the details, to Brianna from MAW for accompanying us both days, to Christy at the Red Wings who handled all the details on their end and also accompanied us and, of course, to Jimmy Howard for spending some time with our little man and making a dream come true for him. Thank you, thank you, thank you Make-A-Wish Michigan and the Detroit Red Wings for a wonderful, wonderful weekend!!