Being Up With Down Syndrome

Lately it has been a roller coaster within myself about Looly (Kate), our youngest daughter who has Down Syndrome.  As her parent I worry if I'm doing enough.  She still doesn't feed herself with a spoon or fork.  She is beginning to listen when we say no.  She has learned how to undress herself down to her onesie, even if we need her dressed!  If it is just a matter of when, I can handle that, but if it's a matter of "we should have", that's my worry. I reflect on how much I wanted to hold onto my pregnancy with her.  Making many deals with God along the way.  From very early in my pregnancy I had whispers that this child may have Down Syndrome.  I had started writing a story, in the story was a big family who had a child with Downs Syndrome and the Mom was pregnant and wondering if the child she was carrying would have Down Syndrome.  Now why would I write this???  Why was this story so important to write?  Now I know why.  I didn't get any genetic tes

I can't do it all.  Sometimes I can't even do half of what needs to be done.  Every single day there are dishes, laundry, cleaning and cooking that needs to be done.  Some days a lot gets done and some days it looks like a tornado went through.  I remember many years ago, a friend told me when she got home from school, her parents told her, her room was robbed.  She walked into her bedroom and it looked ransacked, just like it did when she left for school in the morning...so, I like to walk in my house on those bad days and tell the kids we must have been robbed, the place is ransacked! ;) I have decided that I truly am going to keep Sunday's a restful day.  I'm going to carry on the tradition of Sunday Mass and a lovely Sunday dinner.  That is all.  Kids still do dishes.  But a more relaxed day to energize myself for the week ahead, which always has a husband, five kids, two dogs and extra family and friends involved.  My husband started to complain about some projec

Two of my five children caught a stomach virus.  Looly and Trinity, our two youngest.  We are on day four.  Any Mom reading this knows that our world at home just became very complicated with this illness.  Loss of sleep, worry, trying to keep the sick ones on time with pain reliever and fluids.  Too much Facebook because most of my time is in the sick livingroom waiting on them.  Too much Pinterest, if that is possible and way too much Farm Hero's in between. Sometimes Looly becomes inconsolable and we turn on music.  It stops her crying and she loves music.  My sisters and I have talked about taking care of our kids and trying to find the right combination.  For example, if Looly is crying, turn on music, lay blanket on the floor, put her favorite toy on there, turn around three times and jump backwards.  Wa la, happy Looly.  Or if she needs a nap, put three stuffed toys in her bed.  Two is too little and four is too much...  Insanity.  When in the end there really isn't a

It was a busy week.  It was a trying week.  How can I save the world if people (my family) want me to cook, clean, teach and love them? The Steel Valley District, Park Elementary School teachers were caught being bullies.  I was dismayed by this  story  that started with denial of a student, 10 year old Kaitlin Montgomery who has Autism, chronic lung disease and pulmonary hypertension, which makes it difficult for her to climb stairs or walk any distance.  She needed to use the Faculty bathroom on the ground floor where her classes were, because there wasn't a student bathroom on that floor near her special education classes. Eighteen teachers, two of them being "Special Needs" teachers, filed a grievance with their Union to make this disabled child use another bathroom on another floor.  Really.  Not only was it disturbing, but it was utter bullying.  These capable teachers have a total of three faculty rooms in this building.   After this came to light throu

When I first became a parent I was looking to be exactly like other Catholic parents, whatever that was.  I immunized Beau and Maria.  I put them in pre-school because they would never get into Harvard if I didn't.  I bought the "Happy Meals" because that was what all the other moms did.  I dressed them like all the other kids.  We celebrated Santa and then God.  Why oh why was I so unhappy?  I had everything I wanted, so I thought. One day I turned and saw a disaster following me.  A Catholic School run by feminists of the worst kind.  Caring more about academics and fundraising than the souls of these little people.  We were raising them to put God on the back burner.   God knew exactly what to do.  I became pregnant with Ireland.  I had secondary infertility.  I was very busy when I became pregnant.  I was working part-time for the Catholic Pre-School, working part-time as a Waitress at a place that had Country Music Shows.  I was also helping my brother start

I read this article this morning. As I read the comments from parents that said they would abort their baby if they found out it was going to have Down Syndrome, it occurred to me what a different conversation there would be if they didn't know they were going to have a baby with Down Syndrome.  These people would learn that they were given a gift. The comment "I would have a very hard time dealing with a retarded child. Retardation is relative, it could be so negligible that the child is normal, or so severe that the child has nothing… All of the sharing things you want to do, the things you want to share with a child – that, to me, is the essence of being a father. There would be a big void that I would feel. I would feel grief, not having what I consider a normal family." Let's talk about this statement. If you had a "retarded" child, the first thing you would do, is stop using that word. You have a child that has Down Syndrome. This is not who t

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 occasions, such as my Dad's funeral and the day my Uncle Tom died.  Walter

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 attention but with special love that each person ha