Friday was day 1 of a few new changes.  The boys are officially in a home nursing program.   We’ve added some paperwork…and had to get reorganized.

The boys (and D and me) will learn a few new processes, and teach and learn to trust some new people.  So far the changes are feeling right.

The boys were themselves Friday during orientation day.  N had a mild seizure.  L had some autonomic dysfunction and had a temp of 90 and heart rate hovering in the 50’s in the morning.  Our nurse was able to learn how we deal with each of those.  And both boys were doing great by the end of the day.

As far as the boys are concerned, nothing makes me happier than when they have something to smile about. Even when I have no idea what it is.  Their joy runs deep.  Their love true.  Their hearts so pure.

So as changes happen, paths reroute, plans are revealed, I remain grateful they have, and ARE something to smile about.

Showing off some leg work after stretches.

Since arriving home in May from the hospital stay, the boy’s care plan has escalated to include a variety of respiratory care.  Add that to the G-tube/constant feed pump, the special diet, and multiple meds throughout the day, and I started to wonder if we would officially qualify for nursing care.

And it seems we do!  There has been a lot of paperwork, and lot of phone calls, a few home visits, and a lot of praying.  But the boys now qualify for a medical waiver program.  Obviously the downside to that is that they were sick enough to qualify.  But the upside is – we have a new advocate on our team to help us provide the best care possible!  If you know what state we live in (and no, I don’t mean the state of confusion) you’re probably wondering how in the world they could pay for it.  And the fantastic answer is – they won’t.  We’ll get a chunk of hours through insurance. The even better news – D will be our nurse!  But in addition to D, we’ll have another person trained and familiar with the boys.  I still have a lot to learn about the care plan, we are anxious to meet the 2nd nurse who will care for the boys on occasion, and as always we are a little leery of change.   But all in all – this is fantastic news!  I’m feeling very grateful this evening.  Any parent who has tried for this (successfully or not) knows the struggle and hoops it entails.    This wasn’t easy at all.  But I am thrilled for the outcome, and excited to learn more!
   
 

My facebook feed has been filled as of late with the story of Joey+Rory.  Joey is in final stages of cervical cancer, and after recent treatments failed to kick it, they have decided to finish out her life at home with family.

This is obviously a touching story for a number of reasons.  We all know someone touched by cancer, and fear that this very moment may be reached in their life too.  She’s also a mother, and no mother wants to think about dying young and missing out on the lives of our children.  Even more, she’s a special needs mother, and her daughter, Indiana, has been shown in recent videos making her mom laugh even in the midst of appointments and treatments.  Indiana has down syndrome.

There’s something especially frightening about leaving behind a special needs child.  Caring for them becomes your purpose, and trusting someone else to do that is impossible.  I can’t imagine the heartache she is going through, but the brave face she and the family have put on for the public is admirable.  Such amazing grace.

When the natural order of life is disrupted, it seems unfair.  When children lose young mothers.  When mothers lose children.  When science doesn’t work.  When prayers seem unanswered.  All of the above are happening all around us. May we have each other’s backs and step in to be the mothers who are gone, may we help find the love and purpose that a mother lost, may we rely on faith when science fails, and may we find joy despite undesirable circumstances.  And may we do it with such amazing grace.

I’m not telling you anything you couldn’t have read on countless other pages.  I do hope you’ll join in praying for this family.  And I do want to share a special moment that happened, and that back story seemed important.

I play music for the boys a lot in the evenings.  After reading an update today, I decided to play Joey singing Amazing Grace.  I’ve never seen Nolan react with such joy!  I ended up playing it 4 times, and he smiled and responded the entire time.   K declared it Nolan’s favorite song, and we both watched his joy in awe.

I know that our natural order has also been disrupted.  I know cancer stinks.  I know the challenge and blessing of seeking joy despite unanswered prayers.  But despite all of that, I also know amazing grace.