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.