Thursday, April 23, 2009

The way she was....

I miss her every day and she's right in front of me. She is a silhouette of the child she once was. I get glimpses if her quirkiness, shadowed by the ogre she can be. We don't know if it's the meds, the chemicals, the hormones or lack thereof. Is she tired, nauseous, spoiled, or unhappy. I have not been through what her little body is wracked with, I do not know. I am a coach. Most days I feel like acting out the way she does. I want to be the one screaming that it's not fair. And then the damned voice in my head over and over- life's not fair. Deal with it. I am so trying to deal with it. I try to be a good friend and listen about other children acting out. I don't want to be the person who thinks they are worse off than anyone else. I listen when I am told she has changed, she used to be sweet and now there's a nasty streak. Like I haven't noticed. The assumption is that I must not notice, or else I would have done something about it. I listen when I am told things will have to get back to normal and we will not be able to let her get away with how she's acting. Like it doesn't frustrate me. Like I don't spend half my days reasoning with her, correcting her, redirecting, disciplining, helping her. The other half is spent cleaning, caring, helping, redirecting, disciplining, reasoning with the other 3. We stay home many times because we don't want the public display. I lament that I don't hear from half of my friends because I know they don't want to bother me. I am saddened that good friends' lives have gone on around me and I don't have a clue what's going on with them. It's a strange feeling to know you have an amazing support system and at the same time feel so alone.

I remember being the mom that everyone raved about how good my kids were. I remember them listening and not talking back, at least in public. I remember facing the challenges at home, so they would behave in public. I marched them out of rooms and out of parties when they acted like fools. Then I was so strapped for time and energy, I began to pick my battles. That is where it went wrong. I couldn't physically be the parent I wanted to be. You make due. I sacrifice exercise, personal hygiene, and health because there just aren't enough hours in the day. My personal time is sitting here, trying to sort my feelings so I don't explode. I am the parent with the screaming child in line at the drug store, putting my foot down- all the while being judged for being too harsh because that screaming child is a cancer patient. You have the nurses and specialists at the hospital refuse to say goodbye because they know you will probably be back. Maybe not next month, or next year, but you will be back. And you hope they are wrong- you would love to prove everyone wrong- but you prepare yourself for both cases and try to find the happy medium.

Lily was the child everyone got a kick out of. She walked into a room and it lit up- she lit it up. I am sorry for those who were not able to experience, because it was something else. She challenged me in ways that I knew once I got over the rage- I was going to be laughing about whatever she did that time for YEARS. Her personality was like a little incarnation of my dad- just something people were drawn to. She wasn't sick when we started this process- so everyone in the hospital got to know her. And I think they miss her too. They keep popping around, even for just a glimpse of it. And we all pay the price, when she turns on a dime and we hope that it's the meds and that we will get to see the amazing personality again. I resent being told that I won't be able to treat her like she's special. I know plenty of people who go through life acting like they are the definition of special and they haven't done a darned thing to deserve it. You get to listen to parents hoping it's just a "phase", because they apparently are doing everything right. I know this is a phase- I just have no clue what the next phase will be. We are living in phases. All I can hope is that they be true to themselves. I want my kids to excel in school, be great at sports, or what ever they love. I want them to live. Sometimes life stalls. Sometimes you have to get out and give it a push. Sometimes you are the good samaritan and help by giving someone else a push. Sometimes you need a push. Sometime a push in the right direction is ponying up an putting a positive spin on a pity party.

I'm gonna try to look at it as a new beginning. A reshaping of our family. A second chance. I am going to try and remember the way she was with fond memories and embrace who she will become. The road is bumpy, like the dozens of special beads she has collected, but there are smooth beads too. This period in our lives will someday be a memory, a hurdle and I am grateful just to know that we can clear it. The next hurdle might be bigger, might be smaller...all I know is that if I can't clear it- I may just have to push the darned thing over and keep going.


  1. No matter what "they" say, you are doing an amazing job mothering and loving the stuffin's out of YOUR kids. I know you know that deep in your soul, but sometimes it just helps to hear it from someone else. I see you and the beautiful, BEAUTIFUL soul you are. I love you.

  2. You have reached an interesting place. You describe it as "alone" I can say from my own experience, it is one of the loneliest places a mother can be. I just want to reassure you that you are not alone.
    It is your situation that is unique. There is no other mother who has or will experience exactly what you have.
    Please try to take strength from the fact that you are experiencing what living is all about. This is not a perfect world. You can help teach Lily that the strength is in how you deal with it.
    You still have the same Lily. She has just become a "Velveteen Rabbit" She has been bumped and bruised. She has been cut open and stitched back together. She has had things forced onto and into her. She has lost a few pieces of herself. She has been bundled and poked until it hurt. Sometimes it hurt so bad that she couldn't even stand to wear clothes.
    So when it seems the toughest just take a moment to stand back, take a deep breath and just look at her. You have a beautiful Lily.
    It is okay to grieve for the way things were but don't stay there too long. Nothing ever stays the same.
    Do not underestimate your power of "love". Lily just needs to experience some time without hurt and without feeling sick. You will see the "old" Lily surface again.
    You are the kind of mom I am counting on. I want you to take the best care of yourself so your Lily will see that you know how to do it. She will also learn that you will continue to take the best care of her.
    Since Pooh has been with Lily through thick and thin I thought I would consult him today. I found an interesting chapter in the Tao of Pooh by Benjamin Hoff. The chapter is titled "The Pooh Way" or "Wu Wei". The significance seems to be in the character Wei. It was developed from the symbols for a clawing hand and a monkey. To quote the author "Wu Wei means no going against the nature of things; no clever tampering; no Monkeying Around."
    So on behalf of our Lily Kay Monkey, don't monkey around. Just keep on jumping those hurdles and when you are too tired to jump--just go around.
    Love you, Mom (Grandma)

  3. I'm not a mom. And I've never tried to manage what you're managing. But I have to admire the courage it takes to acknowledge: "This is my child. She's dealing with forces outside her control and my control. She has changed. I will always love her." I have my own set of emotional/behavioral issues. And I'm too old to blame it on something else. It really does mean a lot when someone else can simply acknowledge the problem without have to change you.

    I think you're an amazing mom. I think you should keep sharing your feelings and ideas. And I think there are a lot of people out there who you might now know now, but who may be able to provide you with a lot of support. Check out if you haven't already.

    Hugs to you and Phil.

  4. Dear Jen,
    I admire you for so much. For being honest and hopeful for everything good and all the things you've all had to deal with that are not so good. You gracefully "deal" with it as best as you can and take your lovely family with you as you rise to a new level none of us will ever know.

    I think Roberta say's it all so perfectly regarding little Lily--a wounded rabbit. You, mama rabbit, just keep licking those wounds for her,, and she will heal. She and everyone in your family will rise above this to a new appreciation not even comprehendble at this point. I HEAR every word you are sharing about Miss Lilly then and now and I'm so honored to hear it all.

    Your words are pure, unconditional LOVE.

    Peace to you,


Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)