Wednesday, May 18, 2016

Thoughts on how my life events have made me more human

I used to think there was a right way and a wrong way to do things. Do A, then B, then C and all is right with the world. There is a natural order and a way things are supposed to happen and if you do it in that order then life unfolds....uncomplicatedly (yes, that is a word, I don't care what Google says).

Until it doesn't.

You do A, B, and C and then Y happens. And you start to ask Why? Why? Why? You start to question everything you know is true. Things just don't happen this way. You go through the motions of life. You wonder what the heck is going on. How your life was swapped with some life meant for someone else. You fight against it. You are in denial.

People come out of the woodwork and tell you about a friend, relative, cartoon character that had XYZ and then they got help and everything was fine. And you think to yourself on alternate days: Yes, we will get the help we need and everything will be fine. This will be a blip and we will be telling the stories that all is fine and we have no idea why we ever worried.

On the other days you think to yourself: We are getting help. But things will never be fine. Life will be be forever changed and fine is not a word that will ever describe your life. (Later, maybe much later, you will realize that fabulous is a much better word to describe your life - even though some days you would still classify it as frustrating)

And people with kids with different abilities tell you how having a child with different abilities is really a blessing.  And you just think they are nuts. Why are they telling you this? You can't imagine the day that you will think what they are telling you is spot on.

Other people tell you about the poem Welcome to Holland and you say nope. Not at all. We are NOT in Holland (author note: I've been to Holland more than once in real life so I can say this definitively).  And you think then as you do now, F&*K Welcome to Holland. It's a great poem written by a (I'm sure) lovely Mother but it has nothing to do with me. So please, for the love of all things holy PLEASE STOP directing me to that poem. I find no solace in it.

You muddle through life like it's a dream and one day you will wake from it. You get no sleep and somehow have to function day in and day out day after day after day. You are numb.

You and your spouse may/may not be on the same page. And that can be hard. It can cause marriages to break up. It can cause other marriages to be stronger. Some days you think you are a mixture of both.

Most days you just think you need more sleep. Because everything seems better after a good night of sleep. But sleep is an elusive thing and you still manage to muddle through somehow.

And one day you stop fighting against your reality. You accept it because it's steamrolled you over and you just don't have enough energy to pick yourself back up. Because, yeah, there is the lack of sleep.

And you realize - WOW!


Once you stop fighting it you think maybe, just maybe, this is a blessing. Maybe those people knew what they were talking about. Maybe the road less travelled is really quite beautiful.

And like many roads, part of the road is beautiful. And part of the road has some pot holes.

And I am thankful that there is wine on the road.  Because, well, I like wine.

And I like my friends.  And I am thankful that I have a lot of friends to help me navigate this road.  And I'm thankful that those friends like wine, too. You know who you are - I can't imagine what life would be like without your support.

And then you know.  The road less travelled has made you more human. You can relate to people more. You see people clearly. You find joy in the small things in life. Your life is more fulfilling and happy than you ever expected. You are a changed person and you can never, ever go back to the person you were before Y happened.

And then you know with 100% clarity that YOU DON'T WANT to. You don't want to go back to that person. And you no longer ask Why, but instead ask how did I get so lucky?

I thank God every day for the life that I am blessed to live. I thank God for the village that He has surrounded me with.

Here's to our human village. Here's to our family and friends and taking the road less travelled. Here's to being human.

Wednesday, January 20, 2016

Martin Luther King, Jr. Lessons

Emma is a Girl Scout this year - well, technically she is a Brownie. It's her first year of scouting and so far it is a huge hit with her! She loves going to the meetings 2x/month. The meetings take place at her school and there are about 20 girls from her grade in her troop. Chris or I always join Emma for the meeting so that we can help her fully participate but often her fellow scouts take over and include Emma without needing (or wanting) our help.

I wasn't sure how scouting would go for Emma. It's at night after a long day at school and she is usually exhausted at night. I wasn't sure how she would participate in the circle time, crafts and activities with her troop but knew we could modify things on the fly. Since she expressed a strong interest to join we decided to give it a go and I'm so glad we did!

Our last meeting's topics of discussion were the upcoming Girl Scout Cookie Sale (if you need a hook up with cookies or want to donate money to send cookies to our deployed troops, let us know!) and Martin Luther King, Jr. When the leader asked the girls what they knew about Martin Luther King, Jr. it was great to hear that they knew so much about him and others involved in the Civil Rights Movement. Our activity that night was to draw on one sheet of paper Martin Luther King, Jr.'s dream and then on another sheet of paper the girls were to draw their dream. During the activity a snack of Pirate Booty was served.

As is typical, Emma's friends sat by her side and offered to help her draw but Emma wasn't so interested. When I asked her if she had a dream she said yes. When I asked her if it had to do with school, she said no. Did it have to do with play? No. Etc, etc. Finally I asked her did it have to do with food? Yes. Her dream was to have me feed her more Pirate Booty. So funny - so Emma. Obviously, her dream was easy to make come true and it happened immediately.

While we were at our tables I shared with the girls how thankful I am for Martin Luther King, Jr. not only because I love that it ended segregation, but also that the Civil Rights Movement paved the way for the disability rights movement. Many of the protections passed as part of the Americans with Disabilities Act used the Civil Rights Laws as a framework. Until the ADA was passed on July 26, 1990 public accommodations for those with disabilities was not required. I can't imagine how our life would be impacted if we didn't have access to ramps or handicapped bathrooms at public places. Just 25 years ago these things were not commonplace. Today, we do encounter our fair share of challenges navigating our environment with wheels and that is after the ADA has been around for 25 years.

Martin Luther King, Jr.'s dream matters. His dream helped shape the America that we live in today and for that I will forever be grateful.

If I was drawing my dream on the Girl Scout sheets last week, it would be that people with physical disabilities would be able to go anywhere - including places not mandated by the ADA - without worrying that they might not have "wheeled" access. That our worries would no longer be that there might not be a ramp, parking or a large enough handicapped bathroom (no, they are not all created equal in size!), but that our biggest worries would be that we might not have packed enough sunscreen or snacks.

Julia is on roller skates pushing Emma, who is also on roller skates and standing in her KidWalk gait trainer, around the roller skating rink at Emma's birthday party.

Thursday, January 14, 2016

Welcome 2016

It's been a while since I've posted here. We've been busy. And not so busy. I work hard to try and find the balance between busy time and down time. Time to spend as a family and time for each of us to engage in our own activities.

Julia continues to enjoy her Irish dancing and playing her violin. She moved up a level in dancing and is now competing at the Novice level. This means her awards are more trophies and less medals. She is happy about adding to her trophy stash that includes the Softball Championship trophy her team won in 2015. As for her violin, she sounds really good! I'm blown away with how good she is considering she has only played for about a year. She would like to add some private violin lessons to her schedule, and we are considering it, but in the meantime we plan on attending more of the children's Irish fiddle lessons that are given the 2nd Sunday of the month. She really had a lot of fun at the one we attended in December and hopes to make many of them in 2016. Her interest in running continues and she has participated in several 5K runs - mostly with her only training being playing tag on the playground. Oh to be young! This year she wants to put more of a focus on her running and she is just waiting for nicer weather to train with Chris. It seems Julia and I are kindred spirits in our fair weathered running bend.

Emma continues to ride her horse every week and loves her time at the farm. She rides after school at a time when she is normally exhausted (school gives her a huge workout and she likes to lay stretched out and relaxed for a bit after her full day) and has been holding herself up nice and straight showing us that her stamina is really improving. She played Challenger league baseball again in 2015 and is already signed up for this year. We've taken a break from therapies outside of school and we all are enjoying the break. This year she is participating in CCD class and makes her First Reconciliation this month and will make her First Holy Communion in April. This is a big year for our girl and it's so good our church was able to work out a class option this year that is wheelchair accessible so Emma can participate in class with some peers. Last year we homeschooled for CCD and it wasn't as much fun for her.

Chris completed another marathon in the Fall and was pleased with his time. He has been training hard and was able to shave off a significant amount of time from his past marathon results. He also participated in a lot of 5Ks around our community and he did many of them pushing Emma in her jogging stroller. Emma LOVES to run and has huge smiles for the fans cheering them on. She loves to run fast so is happy that Chris has mostly taken over running with her since I run much slower. He also coached the school Cross Country team in the Fall. He enjoyed coaching the kids to reach new personal best times during the season and is hoping to be able to coach again this year.

I'm still working on my photography skills and am happy to say that I now see a definite different in the quality of photos I'm taking lately. I joined the local camera club and have been attending meetings and going on some of the meet-ups for shooting and it's been a lot of fun. Our computer lived a long life but retired itself in the summer. I was without a computer for a little bit and am now happily running on a new iMac that is able to run some more powerful programs for photography processing. I've taken the plunge into Lightroom for organizing and editing my photos and it's a steep but fun learning curve. I continue to run at a slow pace - faster than those that are sitting on the couch, though! - and visit the gym for the classes a few times a week to make sure that I'm fit to keep up with Emma's growth!

2015 was the year we became smitten with Zoe (Julia's cat), fell in love with all things Harry Potter, achieved many goals we set for ourselves, and focused on having fun together outdoors.

2016 is sure to bring some major changes to our life! There are quite a few things in the works that have us excited already. I'm hoping to share more of our adventures this year than I did in 2015. I needed some time away but find that I miss capturing the highlights of our year and am looking forward to getting back into blogging again.

Let the adventures begin!