In 1987, the year Rick and I got married, well before we had any children, Emily Perl Kingsley wrote ‘Welcome to Holland’. It’s a sweet essay from a parent’s perspective of what it’s like to discover you will be parenting a special needs child, when all along you had been anticipating a ‘normal’ child.

I read it 15 years later, when Josiah was first born.  Having a child with a disability she says, is like going on a greatly anticipated vacation, but ending up in a different country than you had expected. You planned for Italy and could hardly wait for the splendor and wonder of Italy. You boarded the plane with great expectations and enthusiasm, only to find the pilot screwed up somehow (my words, not hers) and you ended up in Holland. Rather than mourn the loss of Italy, Emily suggests you embrace Holland for Holland has much to offer you hadn’t ever considered.

Read more…

This alone is worth the 2 hour round trip drive to see Josiah every day. This fills my heart with so much joy.  This gives me hope our boy will be back home someday soon.

However, this is Josiah, thinking if he allows a quick embrace, I will leave.  Immediately afterwards, he always pushes me away, as if to say, ‘There, I am done with you, now go.” Baby steps!  This is a work in progress. I’ll be patient.

Today, I’m just going to leave many, many times.

If this isn’t communication, I don’t know what is:

I know EXACTLY how that table feels.

Josiah has been hospitalized a gazillion times in his 13 years of life. Many of those hospitalizations took place between the ages of 0 and 3, with quite a few more sprinkled in as he grew. Those were the days when I kept a bag packed in my closet at all times, just in case we would need to get him to the ER in a hurry. Those were the days when Josiah didn’t push me out of the room and slam the door in my face. Maybe he wanted to. Who knows?

Having Josiah in the hospital is never easy.  If  you have a child who has spent any time in one, you know exactly what I mean.  It totally disrupts everything. Your life is put on hold for a while and you adopt a new normal.

When Josiah was quite young, all 5 kids were living at home with us.  We were home schoolers. We spent practically every waking minute of every day together.  When Josiah had to be hospitalized, I was always with him.  It’s hard to be a home schooling family when the ‘teacher’ is absent a lot.  We didn’t home school for long after Josiah was born.

Read more…

Josiah went into the hospital August 29th. Every day since then I have kept an over night bag packed. Every morning, as if on vacation, I pull my make up bag out of it to get ready for the day. Then I plop it right back in. Every day when I go to see Josiah I take it with me. I have everything inside I might need should I spend the night.

It seems like a joke at this point. With Josiah’s increased agitation I barely get a 5 minute visit let alone a lengthy one. Maybe toting the bag in and out of his room every day gives me hope.  It seems like such a silly thing but offers a morsel of comfort.  Having pj’s, a toothbrush and other essentials helps me feel confident I can be there for Josiah, no matter how long he needs me.

Read more…