The justification

We’re on day four of a new hospital stay. It’s been over 280 days since the last time we were admitted. Long enough to get comfortable & a little cocky. Hospital stays are for the really young & “sickly”. David is bigger, stronger, healthier. He can handle anything! Or so we thought.
His scheduled Botox to “fix” his swallowing issues has turned into four full days of tubes, wires & questions. Why aren’t his oxygen levels higher? Is this really just a common cold? Did the Botox move?
In the meantime, Jason & I are trying to navigate this all over again. The last time we were here, this was all “normal”. He had spent over half of his life in the hospital so we had a routine down and a flow. This time, we’re rattled. It’s unexpected and frustrating. Plus, he’s bigger and understands more so going about our daily business and trusting his care to nurses isn’t as realistic. He’s bored and interactive and misses us when we’re gone. We’ve been taking turns spending every night here but we have Ella to consider too. And, unlike last time, she has school and a routine to contend with as well.
In the midst of all this, I realize how much I try and normalize our situation. I keep putting on a happy face and moving forward with previous plans. After all, this is “typical” for us. The world can’t stop because our little guy is in a time out.
But our world can. I’m not sure why I continue to “Pollyanna” our situation and down play this experience. If anyone else I knew had a kiddo in the hospital, I would be freaking out for them. So why aren’t I? I was invited to a friends baby shower last Saturday. Up until Friday night I still had every intention to go even though it was over an hours drive away one way. Why? Why didn’t I immediately say I couldn’t come like I would expect any other mother whose child is hospitalized to do? *
Yes, hospital stays have been an unfortunate normal in our lives over the past 18 months. I’m guessing we still have a few in our future as well. But it’s ok for me to be mad and upset about every single one. I can freak out every time my son is hooked up to tubes and out of my care for the night. I don’t want this normal and that’s ok too. So, we’ll hold out for the day when overnight stays really are a distant memory and marvel at how well we handled this unpredictable life.
* PS, if you are my friend who had the baby shower on Saturday, please know, these thoughts had nothing to do with you! I felt no pressure to attend. It was something I was wrestling with internally



The anniversary

One year ago today was a life changing day.  I’ve never before and fortunately, never since, experienced such fear.  I’ve never come so close to the edge and I pray I never have to be there again.

I can’t speak for all parents of special needs, but for us, on David’s journey, there have been celebrations, milestones and anniversaries along the way.  There’s of course, the day he was born.  The day we actually got to take him home.  The day his heart was “cleared” and cardio check-ups were complete.  But there are also days worth celebrating that you’d like never to remember.  Today is one of those days.  One year ago today David almost died.  I can hardly type the words, it still seems too dangerous to even write.  We were so close to losing him and even that day, my mind stopped me from going there.  What parent could?  So we prayed and cried and paced and literally clung to him and prayed some more.  And God answered our prayers.  David survived.

So today is our anniversary and that calls for celebration.  I celebrate that David is with us and cheer for the moments we’ve had over the past 365 days.  In the same breathe, I mourn the people we were before that horrible day.  We are forever changed.  In some ways for the better and in some ways . . . well, I guess we’ll see as time goes on.

David is a survivor and today, as difficult as it is to look back, it makes looking forward that much sweeter.  I’ve seen the dark side of “what could have been” and I much prefer where we are now.  Thank you for all who prayed for our sweet boy and continue to pray for him.  God willing, there are many milestones and happy anniversaries to come.