Labor Day Blues

Yesterday was a holiday, the end to a much anticipated long weekend. A planned beach day, a fun day. But yet again we found ourselves in a familiar spot, the emergency room.

Michael’s chronic health issues have an impact on almost everything we do as a family. He avoids triggers during rough times and starts treating early. I know the cues and know how to manage his care the best possible. I should have a honorary nursing degree. After twelve years, it’s not something that’s okay but it’s something we manage.

I sometimes get concerned that our boys have to manage more than they should, that Drew must know too much about bad days and how to help when needed. But he also knows that dad always gets better and always comes home. He’s learning that though some days are bad, life can still be good.

He has to learn that lesson with a missing uncle and with an often sick dad. But we face both the same way, with honesty on a level he understands and lots of communication. Just like we need to let him know it’s okay to be sad and miss someone, it’s also okay to get tired and pray for change to the situation.

But it’s not okay to let it be an excuse. It’s not okay to believe every day will be bad. It won’t. His dad is a great example of not letting something bad stop him, just working around it. He shows them daily how to persevere and I believe that our boys will grow stronger and be more caring as a result of all they’ve faced. But I also hope they’ll be happy and believe in good days ahead always.



– Posted using BlogPress from my iPhone

Room 533

It’s a rough week in our house, with Michael in the hospital as a result of a CVS episode that is kicking his butt.  We’ve battled this for a very long time, with the first episodes just before we met.  At the time we knew so little, and had no idea how many years, hospitalizations and tests he would endure.  Like just about anything else, I think our whole family battles it.

the good stuff

I’ve become as much of an expert on his treatment and illness as possible, his voice and his reminder when he’s pushing himself too hard. Our kids know that Dad gets sick a lot and his hot baths and our frequent quick escapes from dinners out are part of their routine.  My mom picks up the slack when he needs to rest, and especially when he’s in the hospital.  As tough as it is for us, it’s unimaginable for him.  And when we’re in the midst of it, I can’t even believe the world keeps moving outside our hospital window, keeps going without us.

It’s so much like our search for Austin, where we spent the early days not seeing how the world could keep moving, how we would keep moving.  But we each did our part.  In both, some days feel like giving up is the way to go.

But we have to keep battling, have to keep finding real hope in each day.  I sometimes wonder what God has planned for us, when we have so many situations where hope can be hard to find, with so many days of exhaustion and heartache from it all.  Some days are overwhelming.  Today is one of them.

But I still know where my hope lies, not in the outcome but in God being there no matter.  Knowing that God can use even us, even this.  That is hope. 

Tonight I just needed the reminder.