Being Up With Down Syndrome

We just got back from a well needed, well deserved vacation.  We love Tybee Island, GA.  It is twenty minutes outside of Savannah on the Atlantic Coast.  This was our fourth time on the Island.  It is not commercialized.  It is a small town with history, small restaurants and shops.  It takes you to a time of relaxation.   We took our three youngest with us.  Ireland 14, Trinity 13 and Kate who is now 5.  Ireland and Trinity rented bikes to add to seeing the island.  Reminded me of when BJ and I were kids in Crafton.  Hopping on our bikes to ride to the store or pool.  The girls actually rode to the beach.  Such freedom!   I got to spend a lot of time with Kate.  You would think I always do, but during the school year I do a lot of chauffeuring back and forth.  Along with lots of meetings for Kate's future.  So there was a ton more snuggling and talking to Kate.  I saw her change.  She was...

A dad, a husband, a son and a Priest all go to a party...want to know how this turns out?  Well, it is still going on, it is the party of Heaven and earth.  My Dad passed away Wednesday, July 26, 2006.  Worst day of my life.  It will be eleven years this July.  I miss him every single day.  Now I remember the great talks and all the laughter.  I ask him to pray for me and my family.  I know he knows Kate.  I know he is a guardian for her. A husband, my husband.  The love of my life and what a life.  All of our children adore this man.  One day I asked him if he ever regretted having all these children and even Kate because of how hard this is sometimes.  He said he couldn't imagine his life without any of them.  He adores them more than they can even comprehend.  BJ reminds me of how we loved my Dad.  I remember how much BJ loved dinners at my parents house.  So much love and laughter.  All were ...

I met my husband BJ when we were very young...I was 14 and he was 11.  I was best friends with his sister and he was just her little brother.  Later when he was 24 and I was 27, we met up again.  I never ever thought we would date.  He asked me out to dinner and I will never forget how easy it was to talk and mostly laugh!  We absolutely loved being in each other's company and couldn't wait to see each other again.  We fell madly in love.  I never met a man so kind.  He is loving, funny and the kindest person I know. We started our life together in a very odd way.  We just kind of went with the flow of life.  I always wanted to have a big family.  He never ever said we couldn't.  We grew together.  We reverted back to our Catholic Faith.  We raised our children in the love of God.  Every baby we had or miscarried is ours. The three we lost are just as much our family.  We ask our children in Heaven to pr...

The Heart of Mary Homeschool Graduation was this past week.  I was fortunate to be able to take charge of this five years ago.  It is great fun for me.  To be part of these young adults taking their first step into the future is magnificent.  We have a Graduation Mass followed by a wonderful reception.  The hall looks so so beautiful and everything in place for the graduates, family and friends to celebrate a new chapter in their lives. Every year I learn something more about the process.  Some people are always hesitant as to what this entails.  By the time the reception is in progress, they are saying how wonderful it is.  It is a service I love.  Homeschool Graduates are a fantastic group.  They are spiritual, grateful, helpful, mature beyond words, intelligent and directed!  The first Graduation our son was graduating and I was unsure how everything would go.  I was blown away by the spirituality of the Mass and then the ...

Today was a hard day for Kate.  I know what she  has become by great therapies.  I know there are great therapies in her future!  I also know that we, her family, are her advocates.  We fight for what is best for her.  If you have children, you know that a parent fighting for their child, outweighs pretty much anything. When going through the process of getting the best school for her, there is a lot of nonsense and irrelevant paperwork.  Therapists feel they can discuss Kate as if she doesn't understand what they are saying, during this process.  We found out a long time ago that she understands everything we say.  Filling out forms that have absolutely no meaning to her care, upsets me to no end.  Out of 300 questions, I answered all but 12, with a zero.  These are ir relevant questions for her.  These questions are for children with a functional disability?  Not for a child who is nonverbal and struggling with a lot. Ye...

It is early in the morning and all the house is quiet.  The birds are singing and it brings great joy to my heart to see Spring in all it's glory.  It is going to be a rainy weekend.  The birds singing, makes me think they know the ground needs the moisture.  Our farm is so beautiful. I have a sweet book I tend to read every week.  It is  When A Teacup Warms Your Heart  by Dessi Petrova Jackson.  Each chapter is a glimpse inside a mother's love and God's guidance to caring for children.  She inspires me to be a loving Mom.  This morning I read about the "scarred" table.  The memories of the different marks made on that table.  Dessi grasps the beauty of these scars.  It makes me ponder my house of scars!  Lately I appreciate the mess here and there.  Then I walk into a room my daughter Ireland decorated and revel in the beauty of her God given talent!  Our children are growing so fast and the times that st...

Today I came across a solution to a nagging problem.  Kate is still in her crib because she is so small. She is growing and will be ready for a  "big girl bed" .  Sometimes she wakes in the night, as if she took a nap!  Wide awake and ready for her day!  Only it is 3:00 a.m. and we are certainly not ready.    She is safe in her crib and does not climb out.  Now that we need to get her a big girl bed, I have been secretly panicking.  Coming across this website was a Blessing!  The company is not too far away and there is a payment plan.  This safety bed can also travel on vacation! I love new technology.  It took another Special Needs Mom to invent this!  Leave it to a mom that has determination to keep her child safe! Easter was yesterday and we had 15 for dinner.  Dinner was so good and I was only ten minutes late getting it on the table.  It's a new record!  We celebrated Angel coming into the Church a...