How many people know a person with Down Syndrome?

Notice in the title of this blog I said PERSON.  Because you have a diagnosis, doesn't make you that, you are a person first.  So our Looly (Kate) has Down Syndrome.  She isn't Down Syndrome, as my good friend Tim, pointed out to me at a bad time.  My problem is, I don't see it, like others.  When I am home with Looly, she is just my child, like the rest.  When we are in public or with other children without disabilities, then I see it.  Many times I don't like looking through others eyes at Looly.  It was suggested to me how relieved some friends were that we are sending her to school.  As if all along we weren't handling this right.  The thing is, we had to realize that these people are clueless and most of the time Looly isn't even on their radar.  They have busy lives and we are just a fleeting thought of "well I would have..."  My good friend Amy said, don't look back with regret, you were doing God's plan and now is the time for change.  As I dwelled on this I came to agree.  I do have friends that are supportive and always there in times of struggle.  My friend Fiona would be here in a second if I needed her to be and I have many many friends and family who pray for us.

Looly starts pre-school Monday.  She is very ready.  When we went to visit the special needs pre-school, she never looked at me or BJ (her daddy), once.  If she could talk, I would have heard one word, FREEDOM!  She was exploring and other children were loving her immediately because she is smaller than them and a new addition to their routine!!!  I wasn't hurt or shocked, I was relieved.  As parents, we did what we thought was best for her.  We kept her safe and enveloped in the love of our home.  I homeschooled my two oldest and still have two almost teenagers I homeschool now.  We weren't sure if we would go that route with Looly.  Looly is non verbal.  She has difficulty talking because she has a high pallet in her mouth.  The frustration at four years old has escalated and it is time for more therapies.  She will get speech therapy, physical therapy and occupational therapy.  It is time for me to let the experts help.  That is difficult on only one level, letting go of control.  The control to keep her safe.  Now is the time to trust and that is difficult when I read the horror stories of bullying even by teachers to the disabled.  I saw a video recently, of a teacher blindsiding a four year old disabled little boy, who was hesitating to enter the classroom.  She walked up behind him and kicked him into the room.  He fell down so she picked him up and pushed him. Here.   She has since been fired.  We met the teachers at Looly's school, we met the therapists and we observed the class room.  We are confident that these people love what they do and have her best interest at heart.  One of my dearest friends, Erin, was Looly's first occupational therapist in our home and I could never thank her enough for all the suggestions and advice and laughter she brought to our family!!!  She suggested early on that Looly drink from a straw sippie cup, to strengthen her mouth so her tongue didn't protrude as some people with Down Syndrome do.  Looly was challenged by Matt another great therapist that did early therapy in our home.  He is going to be her physical therapist at her school and we couldn't be happier, Matt has been another angel sent our way.

There are difficult times in our lives but I noticed it isn't because we have Looly with Down Syndrome.  It is because we have five children, our own business, a farm and a million other things that most people have.  We just went through a horrible upper respiratory infection.  Every one of us got it!!!  Three weeks later I'm still not 100%.  Most of my friends and family have it or had it.  So yes, Looly has extra needs but well worth anything for our children.  She loves to laugh, dance, look at books, play outside, swim, shop and have lunch at Red Robin!!!  Do your children?

Your Gone

Just like that, your gone.  My phone rang and my mind couldn't comprehend what I was being told.   Your gone.  All my faith usually kicks right in.  Not this time.  One thousand memories.  One thousand laughs.  One thousand one liners among friends.  The beers, the music, the friends and you were the center.  The core of our friendships.  Even in disagreements you chose me.  Stood up for me even when I was wrong.  I knew you were a hero.  To all of us that had it easy, you struggled and got that 4.0 while working two jobs and still making time for us.  What an inspiration.  Every single friend shared in laughter and joy.

So we each went our own ways, but when we saw each other it was as if no time passed.  You never got to see this farm.  You didn't get to meet Kate.  I'm sorry there wasn't more time.  Really sorry.

My life keeps changing and people I love and cherish keep leaving.  So here is to you John;

Death leaves a heartache
no one can heal;
Love leaves a memory no
one can steal.

Until we meet again,

may God hold you
in the palm of his hand.

I love you and we WILL meet again.

Making Adjustments

Looly is going to start preschool.  It isn't the preschool we were trying to get her into, it is the preschool we prayed for.  It is a special needs preschool.  She will get speech therapy, occupational therapy and physical therapy.  She will be with other kids that have disabilities.   None that have Down Syndrome.  The other kids can talk.  Looly only says a few words.  This is the time to move her along to be the best she can be.

I can't wait to hear her ask me to make her pancakes for breakfast.  Or to take her to the library, or outside swimming!  What I really can't wait for, is to hear the words, I LOVE YOU MUM!  When she was born I had to wait four excruciating days to hold her because of all the tubes attached to her.  Now we are waiting four years to hear her talk.  To say patience is a virtue is certainly being taught to us!

Looly is listening better.  When we say no now, she stops her antics, which are many.  She is the sunshine in our home.  She gives the best hugs I have ever ever gotten.  If someone is having a bad day or feeling the need for love, we know where to go, Looly!

I haven't written in a long time because of so many changes inside of myself.  I needed to stop worrying so much and find genuine joy again.  I needed to rediscover a side of myself that got lost along the way.  God certainly walked along holding my hand and reassuring me of His undying love and forgiveness.  This is the Year of Mercy declared by our Holy Father Pope Francis.  We have been learning so much about mercy from others and learning to give mercy.

I found the homily my wonderful Priest gave today very comforting.  Every year we read the Prodical Son story.  This year it touched on me personally.  Even though I didn't leave, internally I was astray from God's infinite mercy.

Trying to be the wife, mother, daughter, sister, aunt and friend isn't easy, but with Gods grace I will carry on with joy.  Looly isn't the only one making adjustments!