A Journal of Thoughts
From my heart to yours

    I was once quoted in a Canadian newspaper article as saying "Kailey is my greatest joy and my deepest sorrow".  I think the depths and extremes of emotions I've felt with Kailey are some of the most exhausting  parts of parenting a child with a disability, yet through them I have grown the most.

    I'm continually amazed at how quickly the deepest of love for Kailey can turn to hate in just one instance.  Stress and lack of sleep can take every ounce of patience and understanding away from you and drain you.  Thankfully God always fills me back up with the love I have for her.

    Kailey truly is all that one ever wishes for in life.....unconditional love.  Kailey is capable of giving that, even when I lose it with her.  For that, I am so very blessed.

    What FREEDOM when Kailey goes off to school!!!!  Not because I'm free of her......but I can run around and open EVERY door in the house!!!   I feel like I've been released from prison sometimes and am able to smell the fresh air of normalcy!  

    Sometimes I feel as if I've wasted the entire day and gotten nothing done....cuddling Kailey in the hammock, changing her clothes for the 3rd time, always being the only adult surrounded by neighborhood kids playing just so Kailey can be a part, always being within watching and "catching" distance in the yard.  But when you really think of it, and quit being an adult,  God is blessing me with the real joys of life and I have to continually remind myself of that when I'm not feeling so pleasant.  I always say that "when I'm just with Kailey, life is perfect"  and I make sure I follow that up with "it's just living life with Kailey that's hard!" 

    Thankfully Tom is such a wonderful person and so understanding because many days.....I don't get anything done!!!  Sometimes Kailey is a GREAT excuse!!!

      Life....it's all in the way you look at it! 
       Good day:  I will never lose my "babies" cuddles.  Bad day:  I will NEVER lose my "babies cuddles.
       Good day:  I believe everything in the 'choosing happiness' books  Bad day:  I could throw the book away and carry on unbelievably mean mental discussion with the authors!
       Good day:  I joyfully grocery shop with patience, having Kailey take active parts in the experience, educating the community in view through model behavior    Bad day:  I just DARE somebody to say one thing to me, give me one look about my negative, impatient attitude towards my daughter and I swear I'm going to hand her over to them and walk away.  I've practiced nasty, clever remarks back to these "imaginary, judging" shoppers who never seem to materialize.....thankfully!!!
      Good day:  We've got the next 60 years to work on things.  They don't all have to happen before age 8.  Bad day:  We've got the next 60 years to work on things.
       
    Any of these sound familiar?  May you have more good days than bad and if you are in the middle of a bad day right now....remember the good will be back.  Allow yourself to go through the bad days, the horribly terrible ugly thoughts that run through your mind WITHOUT placing any guilt on yourself for feeling them.  As long as you don't act out/ follow through on those negative thoughts, know that it is part of a process.  Stress and grief are so strong and this is your bodies way of handling stress.  Being aware of them and that they are a natural part of the "experience",  helps you to move through the feelings and stages more quickly.  I absolutely refuse to feel any guilt about my thoughts and feelings.  Maybe out of selfishness, good selfishness, but guilt will serve me no good and only harm me.  I have enough to deal with, than to waste my time on guilt.  

    Guilt....some Angelman moms struggle with feeling 'responsible' for 'giving' their child Angelman Syndrome.  Well here's the way I look at it.  It was out of my control.  An egg went bad when I was a developing fetus, so blame it on my mom, her mom, her mom's mom, no wait....it was her mom's mom's mom's fault!  It's nobody's fault.  It just happened.  Wait, it must then go all the way back to God.  He did it, why did he do this to me?  Well this is my theory.  Truth or not, I stand by it.  It works for me.  God created a world, a perfect world for man to live in.  But God also gave man free will, the freedom to choose to follow God or choose not to follow God. Instead man chose to turn against God through sin.  Man's sin created the imperfect world in which we live in, in which my body was formed in, in which Kailey's body was formed in.  It's the way of this world to have imperfections, NOT Gods.   Now Kailey's body IS imperfect, if I could take away the Angelman Syndrome I would but through Kailey I see more of God's perfect-ness, his beauty; than I ever thought possible.  (That is if I'm having one of those good days!  Which by the way become easier to have, the more you practice at it)  

   There are heavenly angels and earthly angels and they all share one purpose....to reflect God's love.  Kailey is a true reflection of God's unconditional, all-forgiving love.  When we are at the point of exhaustion and ready to give up, Kailey's true spirit fills us back up with hope and energy.

    Tom went through a particularly difficult period (we alternate for each other, another one of sanity's defenses!) when for Christmas he gave me this poem.  I will never receive a gift more precious.  When you are watching someone you love so deeply go through such pain and are unable to solve it for them/fix it, all you can do is wait and pray.  And that was hard.  He's given permission to share this with you.
    
     I have stopped looking for answers
    that cannot be found.

    I will never stop asking the questions.

    What remains is not what I cannot change,
    but what changes will come from within.

    The search for miracles over fate,
    blinds us from the experience of
    the love of a life we create.

    We never realize how much things mean
    to us until we get too close to the end.

    The sorrow in my heart will remain
    but I do not want to open my eyes
    too late to share the joy.

    I have finished looking, but not loving.

                        ---Tom Sturr

Insights from being on both sides; a teacher and now a parent:

    *As a teacher I always said "A parent knows their child best" but did I truly believe those words?  I had not yet been a parent to know the depth of that and the ultimate responsibility of raising a disabled child for LIFE.

    *Teachers have a definite role as do parents.  But sometimes those roles get blurred, intertwined in ways that are tricky.  A teacher is NOT the child's parent and the parent is NOT the child's teacher in the school, yet the two roles are so closely enmeshed it sometimes becomes difficult. I've  thought  a lot about this and I think there are many factors here.  Special needs teachers personalities lend themselves to being very loving and sensitive.  As teachers of our children they are taking on very personal, intimate care-taking tasks that usually parents only provide for their children.  Sometimes as a teacher, you step into feeling as if you are the parent without realizing it.  
    I would (and I speak for me right now) as a teacher NEVER have said these words out loud or even believed that they were thoughts subconsciously in my being....."If only the parents loved their child as much as I love them, they would do this, this, & this for him at home to help him progress."  But I think on some level that existed to some extent.  I WAS judgmental of the parents without realizing it in some ways.  I acknowledge "yeah, I understand they have a lot on their plate BUT..."  Teachers have such emotion and energy invested in our children and their own hope and dreams YET the only two people ultimately responsible for every decision made in our children's life is the parents.  Children I taught years ago I cared so very deeply for and honestly for.  But here I am today and they are no longer in MY life.  The parents are still there.  Day after day, year after year. 
    Parents have to become both teacher and parent.  We don't get paid (in cash) for the job NOR do we CHOOSE to take on this job.  (In truth, ultimately everyone who chooses to become a parent should be highly conscious that we are choosing to become a parent of a disabled child because that is the truth/the risk.  But somehow it's a 'choice' that is so very different than the conscious, excited choice I made to become a paid teacher of Severely Impaired children)  Parents, unlike the teacher, have to balance their entire families needs, keep their marriage protected, handle daily incredible hassles of hundreds of agencies and absurd hoops you have to jump through to get any assistance, financial crises, medical crises, grief cycling through it's stages, etc...   Yes, even the teacher may have to go home to this in a "regular" family but  families with special needs are magnified 10 fold.  Teachers can leave the students concerns at school.  I brought my students concerns home daily and thought the emotions were deep, and they were.  But they don't come ANYWHERE near what I have as the parent of a special needs child.  But add to this, that as parents we have no idea what is going on personally in the lives of our teachers.  They may be going through incredible turmoil or crises in their own home that we are totally unaware of.  Life can get so complicated at times, can't it.  
     I'm not sugar coating one role over the other.  They are so similar yet so far different in intensity.  I often think as a parent now that I have a responsibility to show what it's really like being in the parents shoes.  But I've come to the conclusion that "It's too much reality to put on top of teachers."  Like in the movie Top Gun - "You can't handle the truth." well, teacher shouldn't have to handle the intensity of it.  That's our burden as parents. That's our reality. Yes, they do need to see and understand our realities but should they or can they ever fully see and feel it.  By getting too close into that reality it can lead them to struggle with the same despair, frustration, anger and sadness that we do.  We NEED them to be full of energy, hope, excitement towards goals, and have plans  ESPECIALLY when we as parents can't muster up the energy or see anything positive in this life at that moment.
    Both teacher and parent have their roles and they cross often.  It's such a fine line but I tell you here...I don't know what I'd do without them and I thank God when he has put wonderful teachers in my life (and He has).  I hope that I was a blessing to the families I taught, even with all the complexities of being their child's teacher and sometimes crossing over that fine line.

    Waiting:  I think one of the hardest things I've had to do is wait and watch while others take precious time learning about your child, how they work/communicate/behaviors/tricks.  I have to continually remind myself that I've known Kailey for 10 years and they, just a month or two.  But I still hate it.  Especially when I'm paying a private therapist and you have to watch "patiently" for over a year of expenses until they get up to where your child really is, what you tried to tell them over a year ago but they had to uncover themselves.  There's no solution to it but there are some steps that can help speed up their learning, which is why I think videotaping at regular intervals is so crucial.  Have the teacher videotape their signs, sign approximations, gestures that your child does so others can see them right away instead of having to figure them out with time.  Also for teachers/therapists/et.al. to write up PRACTICAL, REAL tips to the next teacher or aide instead of flowery, cookie cutter reports.  And as usual, all of this takes time which leads to more waiting!!!  It's a vicious cycle!! 

I Asked God

I asked God to take away my pain.
God said "No, it is not for me to take away, but for you to give it up."

I asked God to make my handicapped child whole.
God said "No, her spirit is whole, her body is only temporary."

I asked God to grant me patience.
God said "No, patience is a by-product of tribulations; it isn't granted, it is earned."

I asked God to give me happiness.
God said "No, I give you blessings.  Happiness is up to you."

I asked God to spare me pain.
God said "No, suffering draws you apart from worldly cares and brings you closer to me."

I asked God to make my spirit grow.
God said "No, you must grow on your own, but I will prune you to make you fruitful."

I asked for all things that I might enjoy life.
God said "No, I will give you life so that you may enjoy all things."

I asked God to help me LOVE others, as much as He loves me.
God said... "Ahhh, finally you have the idea." 

***In God's love, I dedicate this website to all of you.