joey bear

Saying goodbye is a natural part of life often marking the end of one season and the beginning of another. We transition out of the old and into the new, many times bidding adieu to the familiar and reluctantly accepting the unknown. Sometimes joyfully leaving the past behind and expectantly entering a promising future.

Goodbyes can be necessary and good, they can be bittersweet and/or confusing and they can also be agonizingly painful. Getting married was a most joyous experience for me (and hopefully for most married people, ha!); I gladly said goodbye to single life and hello to wifehood. Moving all the way from Sweden to the US was a good mix of exciting, fun, sad and also a little scary. Watching our youngest son regress, having to say goodbye to the ability to sit, eat and reach has been nothing short of both agonizing and painful.

Finding out your child has a life threatening disease with no cure or treatment automatically makes you fear saying goodbye…However, what I didn’t realize seven months ago was that regression = a lot of goodbyes, not just the one dreaded, ‘final’ goodbye.  For us it has meant saying goodbye to the stroller and high chair, and hello to a wheelchair; farewell to puréed foods and hello to tube feeds and formula, just to name a few.  And of course, goodbye to many of our dreams and expectations and hello to what we now call reality.

I want to make it very clear that we know and trust a God who is able and who is in the business of healing. The last word has not been said, prayer works and complete healing and restoration is a possibility. It is by no means my desire to share a depressing post on a miserable life with/and a hopeless future. We don’t, even for a second, doubt His ability to heal our son, but we are also choosing to embrace the “here and now” rather than denying the inevitable. And yes, even in those painful moments when we reluctantly put one of our son’s toys away just to bring out something he played with over a year ago, or a new piece of equipment that will improve his quality of life rather than help him reach new mile stones, He is there and has proven time and time again to be a very present help in time of need. This is not what we want but we choose to trust that He will either heal our son or give us the strength to get through.

The one good thing, although I am not sure ‘good’ is the word I’m looking for here, about having to say goodbye to the past as well as the future (first days of school, Holidays etc.), is that all you are left with is “here and now.” So, now we love, laugh, hug, kiss and cherish every moment of every day with our Joey Bear – living life, in our own way, to the fullest.