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!

Looly is getting Glasses!

We finally found an Optometrist that we love!  Dr. Depner is fantastic and worked with Looly (Kate) for the best care.  We had a terrible problem with the last doctor.  It takes time to find special people for special needs.  Looly was so good!  We even tried on glasses!

We will hopefully get her glasses before an outing next week.  She will be fascinated by so much to see!

It seems we have turned a corner.  Maybe we will get invited places or we can invite without the fear of rejection.  Never has anything been this difficult and heartbreaking.  I see my nieces and nephew playing together often, knowing we can't be included.  It is hard to explain to friends and relatives that we truly want to belong...we want to attend things.  I keep saying "someday".  Maybe I need to go in a different direction?  Whatever way it is, God will lead us!!!

So onward and upward!  Looly will be seeing better and it is a bright world to show her!  The zoo, parks, the beach!!!  We all love Looly, maybe she will take some of the lead of the future!  Maybe I just need to relax.  She looks relaxed, doesn't she?

My Husband BJ and Life with Down Syndrome

My husbands name is BJ.  We have been married 20 years, together 22.  We have been through so much.  The death of babies in pregnancy, the death of my Dad, family upheavals, financial woes, a disabled child and recently, a broken gas line.  Through it all, he has a very soft heart when it comes to me, his wife.  When Kate was born and we were told she had Down Syndrome, we held tight to each other and haven't let go.  The picture in my head is our family standing in the middle of a tornado with everything flying around us and we are hugging each other.  It isn't just us.  Above us would be a picture of God with his light shining on us.  We held onto the sacrament of our marriage and our gratitude of faith for our God.   BJ is a faithful servant.  To God first and then his wife and children.  He suffers great back pain but still moves forward.  My own Dad was very much like that.  The two men I admire most in my life is my husband and my Dad.

I get glimpses in BJ of such sweet love. When I get stumped on how to get Kate discipline that works. Having a son that is still quite young for 20 trying to cut those apron strings and then sew them back on. An 18 year old daughter finding herself in the social situations she so desired and stepping aside to watch her handle her life. We have two daughters 11 and 12 that have exploded in there own way with many invitations to various activities that overtake their lives. I watch BJ nurture and love each and every child by giving of himself to their needs financially and spiritually by example. I remember at the very start of our lives together seeing life with BJ so clearly. Then after marriage and children there would be a fog about what we got ourselves into. He would take my hand and encourage me to pray. To move forward. To go see our friend who is a great Priest. Many blessings, many.

BJ adores Kate. She recently started saying "Daddy". He grabs her when he gets home and kisses her whole face while she squeals with laughter! He takes her in the swimming pool and pulls her inter tube for a couple hours as she smiles most of the time. He buys her candy and tries very hard not to smile when she is mischievous and runs right past him after spilling something. Kate feels that comfortable. Instead of running from possible discipline, she runs past it with a little smile!!! It is very hard for BJ to discipline his sweet Kate. He does but with love, as we all should.

Kate changed the dynamics of our lives for the better. Some days we wonder why we were chosen for such a challenging job. It isn't easy right now. We keep her out of situations that are overwhelming. She is home more. Our family is rarely all together at gatherings, because we will choose to keep Kate out of situations we are unsure of or would burden others more than bless them. The guilt I feel is too much some days, but BJ and I agree that it isn't feasible to enter a party and watch Kate struggle and melt down. This is the time for her to be nurtured. Not everyone embraces Down Syndrome. Your either in or out. It can't be a verbal act. There is so much more. So when will it be great to do more?  We aren't sure but we have surrendered to Gods mercy and will know when it is time.

So Kate has learned this month, no means NO! She has learned to play tea party for five minutes! She loves books and we can now read to her for a little bit. She loves music and nursery rhymes. She can take all of her clothes off, working on keeping them on now with diaper pins! She is quietly repeating certain words at her own pace. She brushes her hair and her teeth. She is joy! She is like her sisters, a Daddy's Girl.

Good Days and Bad Days

Everyone has them.  Good days and bad days.  It used to be more good than bad...but lately it is a guessing game as to what kind of day it is going to be.  I feel very alone lately.  This is where my faith comes in.  Total surrender to the will of God.  Seems like this should be easier than it is.

When I awake in the morning, I try and say my prayers of thanksgiving.  My Novena of the Surrender to the Will of God.  It does help put into perspective that nothing is possible but through God.  My aloneness in the unknown or the unexpected can be very disheartening.  It is unexplainable to anyone that hasn't walked in a parent of a disabled child's, shoes.  When you see the changes around you in this world, a sadness overtakes me.  Sad that some of the options for Kate's care are no longer available.  Sad that in order to keep her soul and body safe, there is a lot of care involved.

The spectrum of when and how things will be achieved is a constant wonder in my life.  When will she talk?  How frustrated is she?  Can I potty train in a year?  Will she swim?  Simple questions that were never a question with my other children.  I have read about parents treating their child with Down Syndrome exactly like their other children.  How?  Are they in denial?  There is a delay with Down Syndrome.  What a child does at 18 months could be what a child with Down Syndrome does at 3 years.  A big broad spectrum of possibilities.

We all keep moving forward.  We do the best we can and have no specific answer on timing.  Now what I can count on is love!  Squeezes and kisses.  Laughter!  Playing, swimming and reading to Kate.  Maybe that is the lesson God is teaching us.  Patience, kindness and love!

Down Syndrome Wonders...

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 age right before teen drama starts. These are cherished moments because they still hear me and are still sponges.


Then there is Looly (Kate). She fell asleep in my arms at 5:30 p.m. yesterday. As I sat holding my Looly staring at her sweetness, I looked at BJ and said we are so blessed. God is so good to me. To us. This road is full of adventure. Some of it is fantastic and more is challenging. Unless you have a child or close relative with Down Syndrome, you will have a difficult time understanding. There are challenges and more is on us to help Looly to become successful. Learning to eat is huge. Down Syndrome children tend to suck and swallow and not chew. She also is very picky about what she eats. She also struggles to use utensils, so almost 3 years later we still mostly spoon feed her. Yes, there is early intervention that came for 2 1/2 years and we are grateful. The problem was that it interrupted my family too much. We homeschool, why can't Looly be homeschooled too? So that is what we are doing, at a slower pace, with love.


It seems that finally I get my purpose, my solid purpose. There is finally peace in our home. God guided me and blessed me with so very much. He guides me now. I have found that once I surrendered and stopped fighting all the things tearing me away from my family is when peace truly came to us. I wanted to go to Mass everyday. I wanted to go to a prayer meeting once a week. What I wanted and what I needed were two completely different things. So so funny, the things that used to overwhelm me, a sink full of dishes, a messy table, laundry, and so much more, just stopped being so important. Guess what, now most of these things aren't issues anymore because they smoothly, without stress get done everyday. Now will this peace last? Maybe, or maybe we should just accept it right now.