“What should we do for Finley’s birthday?” Paisley could barely contain her cake excitement. 

I smiled, attempting to mask the heartache I felt. 

“I don’t know. What do you think we should do?”

“Eat CAKE!”

“Yes, we will make a cake with lots of sprinkles!”

“And ICECREAM!!!”

“Yes, icecream too.”

Paisley quickly became serious. “Finley does not like cake.”

“No she doesn’t. But, she loves icecream.” I keep smiling. 

“And she cries when we sing Happy Birthday.”

“Yeah…”a heavy sigh escapes.

“Why don’t we have friends over for her birthday?” She asks gently.

My heavy heart sinks to my stomach.

“When we celebrate her we do things she enjoys. Lots of people in our home is pretty overwhelming for Finley.”

“I know.” Paisley does not hide her disappointment. 

“Hey, Paiz, we will make Finley’s birthday a great day even though it will be just our family. Maybe when she is older we can have a friend birthday for her, ok.” 

“Ok…can we have cake for breakfast?!”

I laugh despite my burden. Cake for breakfast had accidentally become a Sweetman birthday tradition. My nieces say I secretly eat cake, which sometimes I do. I love that I’m the cake lady. 

“Absolutely!” I grab Paisley and pull her into a bear hug. I know her heart is heavy like mine. I know she is secretly sad. I know she is distracting herself with cake and decorations and fun. I don’t blame her. 

Once I told my counselor the worst day of the year is Finley’s birthday. I know…“best mom ever.” Her birthday is a reminder of how far behind she is and how she will never catch up. Her presents are another thing I have to do with her since there is little she can do on her own. 

I could not keep my despair hidden. I felt lighter afterwards. I don’t remember what my counselor said but she did not throw me out, or tell me off or give me a lesson on taking up my cross.

I remember crying and crying after saying those awful words. I remember lying on my bed, totally defeated by the burden of being my daughter’s way of moving and doing in the world. I would often joke that Finley was Tony Stark and I was the Iron Man suit. Humor often masks deep pain. 

Finley’s birthday is this Saturday. (I wrote this back in April) …I have not yet figured out. Not that I have much figured out, but this is still hard. It doesn’t feel like the worst day anymore but it feels sad. 

As I write today I have a heavy heart and a knot in my stomach. Questions of future swirl in my mind. Will she always live with us? Will we ever have a conversation with this sweet girl we adore? What will happen when she starts loosing teeth? What will happen when she starts her period? Will she be able to shave her armpits? Will she be able to put on a bra? Will she regress when hormones kick in? Will she ever sleep? 

Some things in life need our attention but cannot be fixed no matter how hard we try. They may become better but never healed outside of the miraculous. 

I’m not sure how to end this one today. I know I need a fresh perspective today. I am grateful for King David who exemplifies authentic vulnerability. He says in Psalm 22:

“My God, my God, why have you forsaken me? Why are you so far from saving me, from the words of my groaning? …I cry by day, but you do not answer, and by night, but I find no rest. YET, you are holy, enthroned on the praises of your people. In you our fathers trusted; they trusted, and you delivered them…. I will tell of your name to my brothers; in the midst of the congregation I will praise you… For kingship belongs to the Lord, and he rules over the nations.” 

Bless you today.