Ella is almost 9! (16 days and counting) She starts 4th grade next week. Dance is still her love. We went to Nationals this summer in Orlando. (much more on that in another post)
Alex is 7 and heading into 2nd grade. He's a level one blue belt in taekwondo and has belt testing this weekend. He is so smart and doing really well in school. His real loves are video games and fast cars! (but we have to limit his screen time)
Max is 4 and continues classes/ therapies at his developmental preschool. He's moving to afternoon classes this year. He just had surgery last month to remove his tonsils and adenoids as well as 4 scar revisions. It was a rough week in the hospital and I'll post more on that later as well.
Troy continues to work for a wonderful company here in Olathe! I've gone back to work as Communications Director for the March of Dimes. I also do regular freelance work for Medical City Dallas Children's Hospital and I work at Ella's dance studio on the front desk to help cover our expenses there.
This has been a tough year financially and emotionally. Troy had a large cyst removed from his neck in April. We were terrified that it was cancerous, but everything turned out well and he's been healthy since! I had my annual MRI and my tumor has not grown. In fact, it may be a little smaller. The doctor feels there is still a possibility it's bone, but could also be the tumor with just minor variations in size from the MRI. Overall, the size is stable and that's GREAT news!
It's hard to believe that it's been 4 years next week since we brought Max home. Troy and I were reflecting last night and talking about how "different" we all are. And how we still see the impact on our lives daily. Is it bad that we're "waiting to be normal again" after all this time?
He came home the day before Ella started kindergarten. She was thrown into the mix and we really weren't prepared for her or for everything that was going on with Max. We became hermits. He couldn't go anywhere or be exposed to germs. She was bathed in Purell everytime she came home. Life was all about him, even though her life as a student was just beginning. We didn't make friends with other parents in her grade level. She didn't get to have play dates or sleepovers. She was cheated out of so much.... and even now, it shows. Ella doesn't have friends. She has buddies, people she plays with at school, dance friends, etc... but she doesn't talk to or share or confide or feel close to anyone and it breaks my heart to think that we contributed to that.
2 years later, Alex went to kindergarten. Same thing. Still on germ lockdown and honestly Troy and I both still felt to anti-social, we just didn't care. We didn't mind not seeing people or doing fun things, our lives focused around keeping Max well, protecting him, meeting his every need and we had one another. But that's not enough for the kids. Alex gets bored. He begs for playdates and sleepovers and talks about buddies from school who we don't know, we've never met their parents. We're doing him a dis-service and it sucks.
Troy and I have no life. We don't see our friends. Most of them have ditched us during these LONG periods of quarrantine. There aren't many people we've ever trusted to leave with the 3 kids, especially Max. So we've had fewer date nights than I can count on one hand in the last 4+ years. We don't get to go to movies or dinner (unless it's work related) we haven't celebrated an anniversary other than dinner on our family room floor after the kids are in bed. We don't spend time with other couples or families. We can't go to church, because Max can't go into a class with other kids with germs and we can't take him into a quiet sanctuary. We're just us. I'm lucky to have him! (and I'd say vice versa) but I'm realizing that our isolation, is now becoming our kids' isolation as well.
This summer, we're trying to branch out. We took Max to a Royals game thanks to so free tickets, because we can't afford that stuff! (it was a fiasco, but we did it) We took him to Florida for his first trip to Disney and the beach! It was a memory for all of us. Uncle James sent us passes to the park. We drove because he still can't fly on a plane, etc... but we did it! His surgery was only 2 weeks away and Troy and I both had this trip on Max's bucket list. Sad, but yes, we have a list. When a child is born with all of the problems that Max has encountered, you don't take time for granted, not a single day. There are things we know will bring him such joy, and we want to see him experience those things, now, not later, because you never know when later is too late. Watching those first steps into the sand and the tide, seeing him smiling, face to face with Buzz, we both cried. Every day with him is a gift and these are moments that we can treasure and remember forever!
His surgery, was an ordeal, as we suspected it might be. (again more in a later post) It's easy for doctors and nurses and even friends to look at Max and see how great he looks. It's easy to forget what he's like on the inside. His lungs are crap. His body does a poor job of regulating his sugars. His bowels are still a finely tuned mess and MIRALAX is our daily friend to keep things moving. He reminded everyone at the hospital that he's in charge and that his body doesn't always do what they expect, when they expect it. He spent 6 nights there, need respiratory support for 3 days and was unconscious from a dangerously low blood sugar drop. Seriously kid! But his tonsils and adenoids, which were ENORMOUS are gone. He's breathing easier, eating more, sleeping better. Even his scars are so improved!! This surgery is going to be life-changing for him and we hope it will be for us.
We're looking forward to this school year. Hoping it might be a first where we can ease up a little and not worry so much about his germ exposure. We won't know for sure until the first bugs roll in and we see how his lungs hold up. We are letting the kids go to another mom's house for a bit after school (due to Max's new schedule) where other kids there age will be playing and snacking. Maybe they'll make some friends. Now it's time for Troy and I to do the same. We hate it. Troy doesn't want to be social with anyone. He just wants to curl up in a chair with the kids and hang as a family. I LOVE talking to being around other people. But it's hard sometimes, because the things that are important to them seem trivial to me. My whole life focuses around keeping a kid alive and getting him the help and care he needs to finally go to school. (and juggling my 3 jobs as well as 3 kids schedules). We've started turning attention back to the other kids. They both have busy activities that they LOVE and we work very heard to get them there and support them, so they can enjoy time that's just about them, not about Max and so they know that although our lives have been stretched and stressed and crazy, we are still a family and we love them. We could never have gotten to this point without a lot of help from other kids and parents who carpool, and help us out. I'm sure they must think we're horrible and NEVER pulling our weight when it comes to ride sharing, etc... but we're trying to change than and pick up our own slack now that Max is getting older.
Okay, so I've established that we suck as parents, we have no friends, no social life, and no money. (I mean, who wouldn't want to hang out with us??? We sound like such fabulous fun people!?!) What I failed to mention is that we will celebrate 10 years of marriage this fall. I can hardly believe how quickly it's gone or how much we've been through! I know many couples would have fallen apart and we are blessed to be together today. It's not been easy. We have both had to work really hard to find ways to make this life work. It's not what we planned, not what we wanted, but it's the life God gave us, and luckily, he gave us one another. I could never have picked a better partner for all of this. I can't even imagine my life without him. We've planned our FIRST overnight away from the 3 kids. We've only going downtown, but the grandparents will come and stay here. We know we'll be close enough to come back if needed, but we're also hoping for a first night of sleep and peace and couple time... in more than 4 years. Wish us luck!!!