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.