Joy and happiness

Over the past 6 months we have experienced the highs and lows of almost every emotion under the sun. Given our current journey, we are under the care of many watchful eyes who, apparently, are assessing our family as closely as they are assessing Will. When we were in the hospital, I recently learned that they were evaluating each of us on our coping skills. At my 4 week follow up check yesterday, I was again administered a depression survey to check in on my "mood status." Our hospice-assigned social worker comes each week and scrutinizes everything from our sleeping patterns to our hygiene habits.

Though all of the best intentions are in play here, I can't help but feel sad...but for reasons that many of these watchful eyes are failing to see. I am sad that they are all looking ahead to the end and missing out on the beginning. Sad that they see Will's prognosis, yet miss seeing his beautiful smile. While they are busy searching for our grief and struggle, they are failing to celebrate our joy and thanksgiving. I have told them repeatedly that I will not grieve this beautiful baby in my arms until the day my arms are empty, yet they insist on evaluating our sorrow. They are busy focusing on our happiness and not our joy, and there is a huge difference between the two.

I read somewhere a few years ago that, "happiness comes from happenings" and ever since, it has changed my perspective on what constitutes happiness. Our "happenings" right now are not creating great happiness for us. Will struggles daily to breath and to eat. We struggle daily to be able to comfort him and figure out what he needs. He cries for hours, relentlessly, so we walk the halls for hours, relentlessly. We are exhausted, we are worried, we are restructuring what our new "normal" looks like. This has been a challenge for all five of us.

And while we can't always figure out what Will needs, we can offer him great love and this love is sustaining him. This feeds our joy, and joy is far more powerful than happiness. We have experienced more with Will than we ever imagined we would. We have all held him until our arms ached. We have breathed him in and memorized his delicious newborn scent. We have sang him nearly every lullaby, read him all our favorite books, welcomed him into our day-to-day routine. We have laughed [good, hard, depths-of-your-belly laughs] each day that we have been home...some days because God blessed us with Emma, the comedian...other days out of sheer exhaustion. We have created lasting memories. We have connected more deeply with each other. We have grown closer to God.

Without the fear, we wouldn't appreciate the miracle. Without the exhaustion, we wouldn't appreciate the support and friendship. Without the unknown, we wouldn't appreciate the "normal." Will's strength, healing, and love has given us a joy greater than we could have ever known. The support, prayers and kindness of our loved ones will continue to provide joy when we enter the days where we struggle to find our happy place. Joy is not rooted in happy circumstances, it is rooted in sharing good with others. It brings us great joy to share Will with others. Thanks for reading and helping us perpetuate that joy.