March 18, 2015


A few weeks ago, Carmella and I were sick with the flu.  Most of the family had headed out to church.  I welcomed the opportunity to curl up with my girl and a box of Kleenex and pop in a video.  At one point during the movie there was a birthday party for a little one year old boy.  The scene moved from this fellow blowing out his birthday candle to him running across a field.  With great excitement Carmella shouted, "Mama, that baby can walk!"  In another heart beat she very matter of fact stated, "I bet he can eat food, too."  My heart fell.  And for a few seconds I was speechless.  That doesn't happen very often.  I snapped to it and told her Addison would walk and eat just like that baby... someday.  And then she was back to zoning out in her fever and movie haze.
But my mind was stuck replaying these two sentences over and over.  Because the truth is, I am no longer certain Addison will be able to walk and eat one day.  Oh, it is not like Addison's needs are a secret.  Yet, this was the first time it ever occurred to Carmella her precious Addison wasn't just like any other baby.  She wasn't sad or upset.  She was just realizing. 

Realizations.  We seem to have a lot of those right now.  And not just Carmella.

Last year it seems as if everyone we know of child bearing age had a baby.  Within a few weeks of each other three of my girl friends told me they were expecting.  I remember at the time thinking by Addison's second birthday all these babies would be walking and talking.  And I remember thinking how neat it was that with his delayed development he would probably be learning to walk and talk at the same time.  And how neat it was that he would be the oldest of our grouping of babies because he would have so many peers at the same developmental stage as him.  One year later all these babies are indeed walking and talking.  My big girls come home after seeing these precious ones and report on their progress.  Sunday it was, "Did you see so and so pulling up and cruising around the nursery at church?" 
Yes, I saw it.  And I also saw Addison sitting amongst the infant toys having no clue what to do with them.  And I am so overjoyed for all our young friends in all their happy, healthy, normalness.  But for my kids... well, they are sad.  And this breaks my heart.  And I want to reassure them.  I want them to know that their brother will get there.  But the truth is some days I am finding it hard to continue buoying their spirits.

Because, just shy of Addison's second birthday, our ten month old friend is doing this something we work at for hours. every. single. day.  Something we now hope Addison might be able to do by his third...  or maybe fourth birthday????  Or maybe it was never part of God's will for Addison's life at all.

Realizations.  My big girls are having them.  And my boys, too.  After visiting with friends, I hear them in the back of the van comparing notes.  And I bite my tongue.  Because sometimes, just sometimes, we have to wonder if anything we are doing is making a difference.

Yesterday, one of Addison's therapists was here.  She has been one of his greatest champions since he was just two weeks old.  As she sat across the table from me, I saw in her eyes the perplexed... the discouraged... the "I don't know what to do"...  in other words, I saw a perfect reflection of what plagues my heart these last few weeks.  I dared to voice my thoughts.  "I never realized how hard it was for people with down syndrome... until we were here.  I truly believed that we might have to work harder, but that with love and determination and dedication... he would get there... wherever there is, right?"  She very quietly replied that is true for people with down syndrome.  But Addison's case is not like other people with down syndrome.    There it was, her gentle acknowledgement that he may never get "there."

Just one more realization of how devastated his precious brain and body are by the seizures and the medication.  Even since infantile spasms and prednisone became part of the scenario we held fast to the hope that he could get beyond that, in time and with work and lots of prayer. 
Up until recently we have held on to all the people we know with Down syndrome.  Look at that little one crawl... walk... talk... She has a job.  He's graduating from high school.  They are getting married.  Surely, Addison will do these things, too... one day.

But the fact is, this isn't just about down syndrome.  This is about seizures... and medication... and brain atrophy.  This is about something that no one even pretends to understand.  For many parents down syndrome is the worst case scenario.  And right now we can't even hope for that.
As we approach March 21st and World Down Syndrome Day I want to say something positive.  But watching our son and brother struggle just plain stinks.  It breaks our hearts on a daily basis now.  Watching him gasp for air is frightening.  Seeing him lose months of progress because of a stomach bug or the flu is a disillusionment that makes you want to give up. 

But you know what?  I choose to Praise the Lord.  Praise the Lord for this boy.  Praise the Lord for His wisdom in making our little big guy exactly who he is.  Praise the Lord for his beautiful smile.  His shining eyes.  His glorious giggle.  Praise God for the amazing, wonderfulness of this incredible being who makes all the questions and the pain of realizations worth it... for the simple honor of knowing Addison.   

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