Memories of Green

This last week we have been glued to a new blog about one of our little friends, Jace who just found out that he has leukemia. Reading about their new "adventures" has brought our memories full circle to over twenty-one years ago. We too had started our own "life adventure" and in a blink of an eye, our whole world changed. We were at the old Primary Children's hospital. Old was the operative word there. There was not enough space for everything that needed to exist in a medical facility so most of the hallways were lined with equipment. The walls were painted in the most nauseating color of green and there was no rhyme or reason with how or where most children were located.

We were assigned the green team. This was a team of doctors, nurse practitioners, and nurses who took care of Mikael. We were forced to share a very small room, 10' x 15' with another very sad family who had a very sick baby too. The MRI wasn't even at PCMC, but located at LDS hospital several blocks away. It was a new proceedure and the rad tech joked that he knew exactly what was wrong with our baby. He laughed as he announced that Mikael had a crack in his brain. I remember panic...how...why...and then the tech realized that neither Tom or I got the joke, either because we were emotionally spent or because we were exhausted from over thirty hours of no sleep or both. The cracks that he had referred to were actually the natural sutures in his skull. Not so funny. The doctors came in later and told us that Mike had had a stroke.


I remember with amazing clarity the sensation that the earth had been jerked from beneath my feet as they explained that our boy would never be what we had anticipated. I had signed up for ITALY and got sent to HOLLAND. (It's a poem) And you know since that moment, life has really never been what I had imagined for any of us. The milestones in our child's life came at different intervals and definitely played out so much differently than they did for other children. Hospital visits and medical bills were common and everyday for our family.

Several years ago I heard Alyssa and her friends talking about fish tanks (I'm not sure why but the subject was being discussed) Alyssa told her friends that her very favorite fish tanks were the salt water tanks at PCMC in the surgery waiting areas. Her friends laughed and joked "yah mine too...so when were you there?" She said, " I have spend a lot of time waiting in that room, staring at the beautiful fish and the bubbles, wondering and praying for my brother on the other side."

I do believe that we "signed up" for the tasks and trials that we experience (those that are not part of the consequences of our power to choose) here on earth. I know that Mike did and I am pretty sure that we as a family did. I am not so certain that we knew what we were getting into. Maybe it didn't look this hard or we thought we would handle it better from the other side. Somewhere along the line, I think we forgot that we would forget that this is suppose to be an opportunity to grow. I know that I am quick to forget and slow to remember why I am here. I am here to be the mother and the keeper of the memories...of green.

I am sad for our friends, the Leatham's. I am sad that their lives have and will continue to be different than they envisioned. I hope that somewhere along the line, I can offer them words of hope and encouragement that no matter what happens, the Lord has blessed and will continue to bless them in small and simple ways. I have seen His efforts in all aspects of this journey.

It is funny (ok not so funny) how being a parent is much like a punishment for all those trials that we doled out to our parents. I remember sitting at the counter in the kitchen in my home in Southern Idaho sobbing uncontrollably that my parents couldn't possibly understand and that they were wrong. Of course, several years later in my repentent mode, I recognized that they not only understood but they were right. The funny part isn't how we replay the situation on the other side, it is that it is tremendously more painful on the parent side. I am stating this because I have been on both sides and lying the cards down next to each other, this is harder all the way around.

This is why I think it is:

First - I love my children more than life itself. I will never leave my children, but they will leave me. It is part of the plan. So no matter what hurtful things they say or do, I will always love them. I remember thinking at the time that I had my first son, I will never again just be me. Forever...I will be his mother.

Second - I have been there before. I lived the "drama" of being a teenager and I would never do it again, even if I was paid. I convinced myself that my parents were unfair, unloving, hateful and unchristian. There were a lot of things that I thought my parents were or weren't. They didn't know. Truth is that now that I am a parent, I am convinced that I know even less. As much as I pray for it, my children's instruction booklet has not been FedEx'd to me.

Third - What I did learn as a teenager was extremely painful as a result of my refusal to listen. The result were consequences that I was unable to see because I was proud. As an adult, I have learned that pride is the destruction of all good. It makes us believe that we are invincible, infalible and indestructible. My friend said this about her daughter that has been in the arena of bad decisions, "She wants to eat her cake and have her cake." Choices seem so easy when we interpret that the decisions we are making are based on solid information. When we are sixteen nothing is solid. The ground gets jerked out from underneath us moment by moment. Parents have been there, done that. And no matter what a teenager has been told, we remember what it is like to be there. We remember the pain of our decisions. They haunt us in our children's choices. We can run but never hide, we can cry in sorrow for repentence but we still know because we can still remember how it could have been.

Fourth - Despite all the love in the world, I will always just be the mother. What could I possibly know with all my flaws? Trust me there are many when it comes to me. There are many things I wish as a person I did or didn't do, but as a parent the list is surmount. I wish, no I pray daily that my children will look back on their childhoods and understand that I did the best job with the information that I had at that moment. But more importantly, I have come to the realization that the process of parenting requires humility. My willingness to realize that I don't know it all, but what I do know (from the joys and sorrow of experience) will help my children if they are willing to lay down the gauntlet so to speak and allow me the privilege to lead them through the briers, around the land minds, below the low hanging branches and above the mud of life.

Despite all of that, they have the ability to make choices. Mistakes are part of life. I remember telling my daughter that my job was to place as many stones in the river so that they could cross with less difficulty. I can only pray that they will "choose" to jump to the next one.

"NoRmaL"

Just when I get lulled into thinking that my life is somewhat normal, I am pulled back by an invisible string that seems to be attached to the middle of my back. The "string" jerks me back into remembrance that although I am very grateful for my life, it will never be what I had envisioned for myself when I was mapping out the greater scheme of my journey. I imagine that it like I am walking down a narrow road that is lined with boutiques with large picture windows (you know the one's that use to be) and all the normal lives that everyone else enjoys are inside these little buildings. Everyone and everything is arranged just so. The things that occur inside as I watch appear to move with smooth precision, void of chaos. I watch this as I walk along the sidewalk of my life, where there are so many outside pressures free to intrude on my little family and our lives. Many times I find that "green monster" of envy building inside, because that is where I was suppose to live. However, then I remember that somwhere in time, I was given the choice to live inside one of those buildings and live in magical normalcy. But instead, my personality (built on fighting for what is right and just), looked at the situation as an opportunity to prove the unjust wrong. Right the wrongs!

I just read a story about a sixteen year old girl who will never grow bigger or older and her mother made the comment People magazine that they wouldn't change a thing about her. And my thought was "she is a liar". I adore my child with his disabilities. I love him with the entire package. But if someone said that for a million dollars I could cure him of his traumatic brain injury, I would move heaven and earth to pay it for the cure. I realize that this is not a popular concept for those who support disability movements, because normal is only a setting on a washing machine. But I find myself bombarded by the opposites in my life. Weary for the time and energies that it takes to care for my son's needs and grateful that he doesn't require more. Happy that with all the obstacles in his life, he has so much to give. Proud that despite his disabilities, most are unaware of his needs, sad that because of this the world doesn't acknowledge how truely wonderful he really is. Wishful that one day his burdens will be lighter, guilt ridden because then mine will be too. Caught between what should be and what really is!

When he was small, it was so easy to mold the events around him so that things could appear like I thought they were suppose to. I invited his friends over to play so that I could watch the social interaction more carefully. I wanted to surround him with children who would be there for him when times got tough and unknowing children were mean. I didn't realize that as they grew, they would move on without him, leaving him alone anyway. I taught him that it was possible to accomplish anything he put his efforts into. I watched him practice basketball and golf for hours to perfect his abilities, only to have no one really appreciate the amazing beauty of a boy who plays them one handed.

I love my boy, disabilities and all.

But...well I guess I don't have to go there because I already made the decision and so did he.

"State"ments

So the summer is quickly coming to an end and I am sad...it has been a really fun summer. I have had the opportunity to watch my children do the things they love and I have grown to love them more. I know it seems that all we do is golf...I think I covered that in my very first blog. So I am sad that fairway watching is winding down for the summer. But here are the highlights:

Teton Lakes Junior Championship: Alyssa Edelmayer - 1st
Jaxon Edelmayer - 3rd
Taylor Chevrolet 2 person best ball: Alyssa Edelmayer and her uncle Carl - 1st

State IGA Junior tournament: Alyssa Edelmayer - 6th overall

Hershey Local and State Track Meet - Jaxon Edelmayer - 1st 100 yard dash age 9-10
longest soft ball throw age 9-10

It isn't that they are spectacular (we know they are) but they are excelling at the things that they love. They have passion for something that belongs to them. I love to watch them doing the things that make them most happy.

Let's go Golfing!

For the past month we have lived golf. I wish I were kidding but almost literally it has been next to breathing the sport. Especially Alyssa, who has developed the most awesome tan to go along with her amazing drive. If we aren't playing it, we are watching someone else play it. I use the "we" term loosely because "I" don't really play. I go out and swing at the ball and occasionally it takes flight in one direction or another. While the other members of my family, grimace and attempt to encourage my futile efforts at pretending that I am really enjoying this ridiculous sport. I have however really enjoyed watching my children become successful at the game. Alyssa has travelled all over the state of Idaho to play (and I mean all over too) as well as learned to play really well in rain (something we have had plenty of). She has a beautiful,long drive and if she could figure out her short game, would be touring with the LPGA. As I have learned it is an extremely difficult game. Most day exhausting, frustrating, mind-boogling among other adjectives that come to mind.

One of the courses that Alyssa recently played was Shadow Valley in Boise. A couple of years ago, Mikael played there for the Special Olympics. His dad was amazed at how tremendously well he did and we were all really proud of him. Not until I walked the course with Alyssa did I realize what a truly amazing feat he had accomplished. This course is brutal and for anyone let alone a one handed golfer to go out and golf an 83. Needless to say, I think he needed more than just a gold metal.

Like last summer, I encouraged Jaxon (who is great at any sport he tries) to play golf. It's easier if we are doing "like" activities, I say and if you don't love, love baseball I just don't have the time. So I signed him up for golf and he goes out to play his first tournament and as he comes off a particuliarly, not so great round of golf, he says, "Mom, I have decided that I don't love, love golf - do I get to quit?" He has decided, that like his mother (only he is much better) golf is just for fun.