ALS · Big Daddy · Faith

How Lucky Am I…

A friend recently shared a quote from Winnie the Pooh that said, “How lucky am I to have something that makes saying goodbye so hard?” And I am the luckiest girl in the whole world! It breaks my heart to share with you that Ben’s condition is changing, and he is starting to transition to the end-of-life. Saying goodbye is so so hard. Quite honestly, this is the most heart wrenching experience of our lives.

Over the past several weeks, we have noticed a decline in Ben’s ability to sustain a normal respiratory rate. While he has oxygen to support his saturation levels, his diaphragm and the muscles involved in helping him breath are no longer able to maintain normal function of 16 to 20 breaths per minute. Ben’s respirations have now slowed to between 2 and 3 breaths per minute. Simply put, his drive to breath is faltering and since breathing is a subconscious function, our options are limited. From the very beginning of this journey, Ben has said that he did not want to be placed on a ventilator or to have any mechanical interventions that would reduce his quality of life. Unfortunately, the human body does not thrive in an oxygen poor environment and eventually his blood will turn acidic, and it will completely impede his heart function and breathing. It is very likely that this weekend we will say “goodbye until we meet again”.

Words can’t quite capture the depth of sorrow we feel but we do know three things. First, God loves us and hears our prayers. Second, families are forever, and we will be together again in the eternities. And third, we will be alright – not today, tomorrow, or maybe even a year from now, but we will eventually be alright. We are clinging to each other and to the many friends and family who have buoyed us up during this time. We are muddling through as best we can. Please continue to pray for us as we move through these next few days. Thank you so much for your love and prayers – we feel them!

Many of you have asked and offered and texted and so much more about how you can help. Honestly, I’m still wrapping my head around everything but, in the meantime, here is the link to the Meal Train that has been put together for the next couple of weeks. Again, thank you thank you!

Please continue to pray for us as we move through these next few days and weeks. Nothing will ever be the same without our big guy but we know he will be watching over us. Thank you so much for your love and prayers – we feel them!

Much love,

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