The reality of a Down Syndrome Diagnosis

If we are going to talk straight about our diagnosis of Down Syndrome it may not show my best side, so

Let’s get this straight from the beginning

I love my son.  I fell impossibly, and irrevocably in love with him when his huge eyes gazed into mine moments after he was born.  His eyes, full of wonder, locked with mine and  he owned my heart from that moment on.

But, as flattering as it was that he loved to look at my face.  Why wasn’t he wanting to eat?  Normal, the nurses called it normal, then the Doctor.  Normal? All three of his sisters had hardly looked at me before they had started rooting greedily.  As I held this little miracle, a gnawing sensation crept into the pit of my stomach, one that wouldn’t leave for weeks to come.  He was beautiful, and he was perfect.  I marveled at his little fingers and toes . . . which were blue! He was taken away and given oxygen.  This was common.  Sometimes babies just needed a jump start for their lungs to start processing air properly.    REALLY?    In a few minutes he was back in my arms, those beautiful eyes still gazing at me wonderingly, but still not interested in eating,  At all …  AND the blueish color was coming back.

As I sat in the dark of the night

wondering and praying, someone came in with the news that our son indeed had something wrong with his heart and that it wasn’t getting the oxygen to his blood that he needed, and also (by the way) that the pediatrician suspected he had Down Syndrome.  And so it began, that this mamma who had not slept in over 24 hours, and was to get very little sleep for days to come, entered the saga of Neonatal Intensive Care.

As it was put by one of the nurses there, when you first arrive,  you have tunnel vision and all you can see is your problems, and your little one.  After you’ve been there for a while, you start to look around you, and you begin to realize how blessed you are. And we were blessed.  Rudy’s heart problem resolved on it’s own after a few days on oxygen.  But, the fight was not over, as he didn’t have the strength to eat yet (he was on I.V. fluids until now).  So, a feeding tube it was.  I pumped and froze – then we thawed, tried to nurse, then tried to bottle feed him, then fed him through the tube. This continued for 2 weeks, when we were elated that he took his first bottle of 1 oz.  He still had too little muscle tone to nurse.  Believe me we tried. Every feeding.  For a Month.

Even though my son was beautiful and growing stronger and OH, So Sweet!

there was a sadness.  You see, when I was pregnant with Rudy, and we found out he was a boy, the high hopes for him began.  He was named on the day that my Dad and Eddie spent the whole afternoon announcing football plays (insert name) and introducing  preachers (insert name) to packed venues, until they hit on one that sounded magnificent in said scenarios. We all had big plans for this boy!

I spent the first two weeks praying unceasingly that he would be miraculously healed, until I came to “terms” with the Down Syndrome.  Next, I practically didn’t breath for 18 months, watching every movement in therapy, as I was determined that he would be “normal”.  I was sad for the loss of my dreams for him, and the fear of what he might face in the future. This is a cold, cruel world, even for cute, cute kids.

Slowly, over time, God took my hand. . . as only He can do

He gently showed my heart how I was so very wrong about the human experience and what was important.  He started showing me the magnificence of Rudy the way he was.  The things about Rudy that point us to God are extraordinary.  The things we count as achievements and success are not what God counts as such.  To love. To take one day, one moment at a time.  To experience joy.  To move on from struggles, and sorrow quickly without letting it nag at you and bring you down.  To be content in all situations.  To love. To accept others where they are, for who they are. To laugh, and to make others laugh.  To love.  These are the things God wants for all of us, that Rudy does so well.

Love this boy!

 

 

When his sister, Desi, was born

we saw immediately that she, too had Down Syndrome.

Our beautiful Desi

 

There was no sadness.  Our joy was not weighed down with worry.  We knew that she was and would be all that God had designed her to be.  She was beautiful and healthy and we enjoyed that moment.  And all the moments since.  She brings joy, and laughter.  I have a peace now, which only comes from God, that they, too, have a specific purpose in this life.  Their purpose is different than I would have planned, but our lives in God’s hands is always greater than what we could have dreamed for ourselves – or our children!

More about Down Syndrome:

In the Image of  God

Rudy and his oldest sister Deborah

Posted in Down Syndrome, Family, Life, Uncategorized.

5 Comments

  1. I love this! I found you when you left a comment on my blog CedarsStory.com and your perspective is beautiful. I can so relate, some of the initial thoughts are not something we are later proud of, but it is all part of the journey. I would love to connect further, we have a FB group for those of us spreading awareness of life with DS via blogging, it is called Down Syndrome Bloggers network and I host a Tuesday T21 blog hop over on CedarsStory.com where you can take one of your posts and drop the link there for others to read, I love connecting with other mamas blogging about their path!!!!

  2. Joy, this remarkably written and from such a beautiful perspective! I will never again think how sad it is for someone to not have a “perfect” baby, and will always think of you, Rudy and Desi when I am seeing how perfect everyone born is in the eyes of God! You truly have a remarkable family that I admire more than you will ever know. ❤️

Leave a Reply

Your email address will not be published. Required fields are marked *