Being Up With Down Syndrome

Have you ever been misunderstood? Have you ever tried to do the right thing and have a whole bunch of wicked come hurling at you? What did you do? Did you start to endlessly explain your motives so it could be twisted by the few people that dislike you? Or did you stay silent? Staying silent is not my strong point, thus the blog.;) When I became pregnant with Looly (Kate), I noticed some big changes within myself. I had to fight to keep her alive because of a difficult pregnancy. Then at the end of my pregnancy I had to fight to keep us both alive. Then we were told Looly had Down Syndrome. At that time, we were grateful to God that she was alive and later we were thanking God that her heart was healthy and there was no neurological damage. She just has Down Syndrome. Just Down Syndrome. Say those words...just Down Syndrome. That is what I do, I simplify difficult things, then reflect and think I'm crazy. I was connected to this child at conception. I begged God to let me car...

Walter Sutcavage died last night.  He was 92.  I just recently ran into him while he was at dinner with his daughter Suann.  He didn't remember me.  He had Alzheimer's.  I remembered him.  I will always remember Walter. Walter was my good friend Paul's Dad.  Paul died tragically.   Paul Sutcavage was a corporal for the United States Marine Corps. On September 06, 1987, he died in a car accident at the age of 22.  I remember getting the phone call and screaming in pain.  Not Paul....  Paul had a fantastic sense of humor and we were true friends.  His mother Helen and his father Walter became my family.  Many evenings I spent on their front porch remembering Paul and sharing news of the town.  Walter would get me a beer or more!  We really enjoyed each other.  I always loved them.  Marriage and children changed everything.  They retired to Florida in the winters and we lost touch, except for rare o...

I haven't written for a while because honestly, I was busy staying in God's presence as much as possible.  I have a friend that blogs,  Kara Tippett .  Through her blog, Mundane Faithfulness and her book  The Hardest Peace , I have walked with her through her journey.  She IS walking with Jesus.  She is the mom of four children and a wife to Jason.  She is dying.  I am praying for all. It changed me.  No one likes "drama" and drama chases me.  Unhappy people, rude people, selfish people, mean people, competitive people, abusive people, lonely people, sad people, and mostly the kind of people I have to care about at a distance in order to keep focused on my family.  In all the chaos we are learning to shut the door on the outside world and love our time with one another.  Sharing movies, praying the family rosary, laughing at the things in our day and just cherishing the moments.  Looly is thriving, not with special atten...

In this early hour I woke up and made banana bread for my children.  Snow flurries are falling and I feel a great need to hibernate with my three daughters today.  Just teaching, learning and preparing for the Thanksgiving Holiday, with a little Christmas Spirit starting to weave through my house. So many people suffering right now, so I quietly stop to listen to what God wants me to pray.  Four friends going through chemo for breast cancer.  I have learned and am still learning a lot about beauty, under terrible circumstances.  Baldness!  A woman's crowning glory is her hair?  Nope.  It is her battle with the evil of cancer and proudly showing, yes, I'm in a battle and my spirit is winning.  Even if...the physical battle is lost, the closeness to our Creator is branded into our souls and our hearts just find the wonder in the simplest kindness.  A smile, a laugh! Who helped make a terrible day a doable day.  A simple look from a ...

I like to wake up before Looly (Kate).  I like to pray and read a positive quote or two while drinking a fresh cup of coffee.  When I hear Looly begin to stir, I get her a fresh cup of milk.  She can successfully drink from the straw.  I sing good morning to her every morning that I get her out of the crib.  My daughters do the same if they get her in the morning.  I change her diaper and she drinks some milk.  She then takes off running in the livingroom.  Back and forth to get her energy out.  Then it is breakfast time.  We start our day either chauffeuring someone to class or if we are blessed to stay home, we start our schooling.  As the girls do their work, Looly is learning to use a pencil and crayons.  Just to see her make a mark on paper gives us joy.  Her vocabulary is very limited, so communication is difficult somewhat.  She knows some sign language but stubbornly refuses to use it much.  That is the ...

Some very big things have happened to my family since Kate was born.  I've had to surrender my life completely to concentrating on BJ, all the kids and my Mom.  This is my immediate family.  Of course you all may think "Well sure, of course!"  But I have always had this part of me that gets involved in other peoples tragedies.  Trying to help or fix that persons life...not realizing that I was leaving my family and they needed me more...especially now.  Huge things such as cancer and death are exceptions to the rules.  The every day things have to be completed. BJ is my protector.  He is my very best friend.  He needs me more now than he has ever needed me in all our life together.  My children are each in their own lives but they still need me.  The older kids need me to listen to them and sometimes, I said sometimes, give advice and guidance.  They love me and love having me here for them.  My two daughters are at that a...

What do you do when you are faced with a crisis?  Do you keep plugging along hoping it will get better?  Do you ask for help?  Do you PRAY?  Do you stay cheerful or do you fall apart in grief? I have had a lot of time to think about this lately.  I watched my own parents push through when in a crisis.  Each holding on to their rosary and praying things would get better.  It was a good example for me.   I started working harder.  In every way.  Cleaning and organizing.  Teaching more life lessons on patience and kindness.  Praying as a family.  Trying to wake up in the morning and just be grateful some prayer time, a cup of coffee and some "good mornings" from BJ and the kids.  I start every morning now trying to figure out what new thing to make for dinner.  What kind of goodie I should make today.  Trying to use, just what we have.   Mostly I try to read more positive things.  Right now I am readi...