What Happens When I let go of that Little Hand?

At dinner last night someone asked me what the “long term prognosis is for Bethany”.  I rattled off the customary answer that Sherry and I have rehearsed for the last five years. What fell off my tongue was one thing – what was seething in my heart was quite another.  I explained that she's physically healthy and will likely outlive the both of us in the short-term, but what happens after we’re both dead is anyone’s guess.

I talk about the epiphany we had when we realized that once she turns eighteen, she’ll qualify to live in a group home – a point at which we’ll finally be released from the day-to-day care that drains us physically and emotionally. We talk about the day that we “get our lives back” and that thought seems to satisfy most inquiries. “So you really only need to hang in there for four more years right?”  I usually reply, “yeah – something like that”.

That thought haunted me all night. It wore me down and finally overtook me early this morning, right there in the shower.  I broke down and cried at the thought of someone else taking her hand and being “poppa” for the rest of her life. I cry even now in the cafe where I write this. How can anyone ever know the depths of this little girl and care for what God entrusted to us?  A group home has a rolling staff – mostly committed people who come into and go out of her life with a degree of predictability.  She’s only ever known us as a constant.

And what of that moment when we get our lives back?  We’ve come to know this as life. Our world-view has been twisted like a vine around a chain-link fence. Take the fence away and all you have is a permanently twisted vine that is neither relevant nor beautiful. Try straightening a twisted vine and you'll kill it. In all honesty I'm terrified of the day that we get our lives back. In some ways it signals that we've let go of the most challenging yet precious burden we've carried in our lives. It signals a new beginning but it's not a new beginning with fresh eyes - it's a new beginning started with a heavy heart and tired eyes.


  1. Dave, You can always be a constant...even if she does go to a group home later. You actually will probably feel like you will have more quality moments to offer. I believe this is what many people struggle with in regards to placing a loved one in a nursing home....such a guilt thing. you know...did this with a grandparent for a couple months after she broke a hip. She was so angry at the thought....but actually grew to love the socialization of other residents and staff. She was sad to go home. This gave my mom and aunt much needed respite of a day to day with an already bedridden person. there are alot of group homes with caring, constant people as well. Many run by nurses that absolutely adore their work. I have such high regards for you and your wife for your honesty and transparency...I really think you should keep a collection of your writings and publish them as well as share them with a caregiver support group...you are such an eloquent writer...I love reading your stuff....if there are typos bake on iPad....one fingering the silly touch keyboard with a spellcheck of it's own.


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