Being Up With Down Syndrome

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...

My son Beau is getting married.  He is marrying Angel.  We couldn't be happier!!!  A long time ago, a very wise person told me that when your son or daughter brings home the "one", remember they love that person.  For them to love him/her, this person has to be pretty special.  Look for the good.  Be positive and welcoming, because this is our future. Angel is sweet, kind and funny!  Her heart is huge.  She loves Beau to the moon and back.  Angel is coming into our family twice!  The first time is Easter, where she will be received into the Catholic Church, our first family.  God has called her into faith and she joyously accepted.  She and Beau attended RCIA Classes and successfully completed them.  We couldn't be prouder.  They decided this.  They are doing this.  The celebration on Sunday will be very joyous!!! Then Angel and Beau will be getting married and I will have a "daughter-in-love".  We ...

BJ and I woke up this morning to Kate!  She was "talking" in her room.  I love the little snippets.  She likes to say "bad girl" and then laugh!  Then started calling me, Mum Mum Mum.  Cracks us up.  We love going in her room to get her.  So full of joy.  Always ready for a new day!  This Saturday morning she brought her blocks to BJ to play.  This is our life.  Our children.  We would do anything for them.  All our children are gifts from God.  We never know how the road we travel will turn out.  We do the best we can to share God and love.  The most important part of life is kindness.  We teach kindness and forgiveness.  Our children practice this daily.  We are hoping they don't have the obstacles we have been dealt, but we all know they will have others. My husband BJ is my best friend.  Everything we stand for or against, we stand together.  BJ is a fantastic husband and a s...

Watching Kate. Watching her discover puzzles! When she gets a piece in the right section, but now needs it to fit. Isn't that life? How many times we have gotten the piece in the right section, but will it fit into our children's life or the families? Such a simple task, it seems, yet more complicated than we thought. Kate is five years old, her disabilities delay her to about two. She is saying, maybe eight words. Can you imagine being in her world? Unable to communicate her needs. Therapies have been working on this for years. Now with a diagnosis of Autism, it is all a great big mystery. It is also a great big heartache. Today is World Down Syndrome Day. Today and lately, I'm in mourning. Kate does have Down Syndrome and THAT I could more than handle. The recent diagnosis of Autism is  killing me. For years I couldn't understand all the disconnects. Why we weren't moving forward. I'm completely heartbroken. Yes, I have to accept this. My fight left me. I...