On his first birthday he is sweet and happy and funny and all kinds of wonderful.  He wakes in the mornings sweetly saying dadamamadada, then he slowly turns up the volume until he is bellowing  DADAMAMAMA.  When I greet him, he open mouth squeal-smiles and reaches for me.  I peel the tape from his face, untangle him from his wires and tubes, and pick him up.  He grabs fistfuls of my neck, and screeches as I attempt to silently close the bedroom doors to let the men sleep.  My sneaking does no...

Days before Noah was born 1 year ago held so much certainty.  I like to think God was smiling in anticipation of His plan to be revealed to us. The heart of man plans his way, but the Lord establishes his steps.  Proverbs 16:9 I knew this baby was different.  There was a dream I had early in the pregnancy.  I was at a therapy session with my toddler.  We were cheering my big boy on with trembling joy as he crawled awkwardly.  He never showed his face, but I could see the shape of him, the...

Down Syndrome Day was today.  I am not sure how to celebrate our first DS day.  I am not sure I want to celebrate the thing that has caused so much grief and trouble in the last year. I hate Down Syndrome. It has stolen Noah's health, my time, and dreams. BUT I love my son. He is the fiercest hugger in the family (sometimes they hurt).  He grabs fistfuls of my face, and shouts MA-MA-Bob!!  He happily hangs out wherever I put him with little protest.  He is the best sleepy cuddler, laying...

Noah has been protected and fortunate that he had not gotten any serious illnesses for the last several months his life!  This week Noah's luck ran out.  The boys came home with colds, and last Sunday, Noah got it too.   It settled in his chest, and were able to do the nebulizer at home (which sometimes helped, but other times did not), but his cough caused him to lose feedings.   We ended up in the ER on Wednesday morning with a very sick baby.  He was limp, dehydrated, had high fever,...

Noah's appointments 2 weeks ago showed that Noah's oxygen requirement is now worse!  He has BOTH central and obstructive apnea, and his doctor won't check him for at least 6 more months.  We were told he might be done with it before he was 6 months old, but now it looks like he will need it for much longer.  (feels like forever!)  He now has an appointment with ENT in 2 weeks to see if his airway has any obstruction they can fix with surgery.  If it helps him breathe better, we will do it. It...

Psalm 139:14 I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well.   Psalm 139 played over and over in my mind after Noah was born.  That passage was God's presence.  Purpose.  Sovereignty.  It still comes to mind in these recent months, but with a different emphasis.  Isn't the Word amazing that it can have different emphasis in different situations in life?! The first is that during the night when my mind is stayed on the little facets...

Noah is a good baby- an expert snuggler.  Be jealous, mommas,  my baby would sit on my lap all day just melting.  I love that I can squish his little cheek against mine, and sing to him, and he just seems to soak up all the love.  Yes, he is good natured, but it is a baby's drive to DO that makes them develop and progress.  For Noah progression in development requires me to show him what he should do next.  I am constantly thinking on this as I am caring for my children or home, and Noah is...

Thanksgiving Eve is for reflection. I used to be in the practice of thanking God for the good. Lately those thanking muscles have atrophied.  What am I thankful for?  As I struggle with which answer to give at the table tomorrow, I searched the scriptures for thankfulness.  The red thread- the people were thankful to God because He is Good.  When it is hard to say "thank you," I can thank God for His character; Sovereignty, Intimacy, Patience, Goodness, Provision, Wisdom... Noah is almost 7...

It has been a few weeks since Noah has been in remission, and it's like I have a different baby!! When those blasts went away, he finally started hitting developmental milestones.  All at once.  He caught up!  After starting out almost silent for the first months, I think he might now rival Calvin for being the noisiest boy! He has energy!  Previously he slept so solidly all night, he had me worried.  Now he has stamina to be obnoxious in the middle of the night.  I never thought I'd be...

Noah is in remission!! For the last month his blood work was improving, and on Friday at his appointment the blasts were GONE, AND his neutrophils were UP, AND his platelets were just under NORMAL!! Whew. They know the longer a baby has TMD, the likelihood of getting full blown AML is greater.  If he had gotten rid of it at 1 month, it would have been a 1 in 5 chance before the age of 5.  Because Noah is an outlier, his chance is higher, but we don't know how much higher.  It's maybe better...