Ava is 14 months old (6-24-15), and for the past few days, I have been feeling blue. I’ve been doing pretty well lately. I just think that my grieving has moved from grieving over the changes in my life to grieving over all the challenges my daughter faces.
I think initially the grief I felt was for “my side” of this diagnosis: How is this going to affect and change my life individually, and our lives as a family?
These days I look at my beautiful 14 month old (who absolutely has my heart wrapped around her finger) and I grieve that she cannot communicate verbally to me by saying simple words like, “dada” or “mama.” I grieve that she is not able to roll over from her back to her stomach or sit up without tipping over. I grieve that she is not yet able to walk or crawl. I grieve that she has trouble putting food into her mouth by herself. I don’t compare Ava to any other child her age. I can’t do that. My grief is not about that. I want these things for her. Absolutely for her! And my heart is heavy.
Ava’s therapy is ongoing. The process is slow. And I know that one day she will sit up on her own. One day she will crawl and walk. One One day she will feed herself (and it won’t have to be purees!). And one day, Lord willing, she will utter the words “dada” and “mama.” These will be milestones that we will celebrate. Heck, I will shout it from the rooftops: “SHE DID IT!”
But for now, I stick to the day-to-day chores. I engage my little sweetheart as best as I can. She knows she is loved! I do know that!
And I pray. I ask God to soften my heart; to make me a better man; to help me be the husband and father my wife and family need.
And I allow myself to grieve.
I feel like I am failing at a lot of things: getting Ava enough therapy, remembering to pay bills, finding time to play with my kids, remembering to close the garage door, responding to important emails and texts, eating food, whatever.
This is something I’ve got to get free from. The truth is I succeed at lots of things in our family every day. For example, today, Ava got both doses of her medicine. Both kids ate and went to bed clean. I did 1 1/2 loads of laundry. (That’s my optimistic spin on that basket of clean laundry over there that isn’t folded.) I put together a paper cut-out Iron Man figure for Elijah and re-positioned its head 5 times when it kept falling off. Also, I steamed 8 cups of homemade vegetable puree for Ava AND managed to get her to bed without her throwing up an entire bottle, half her dinner and her medicine on me (that was last night).
So after I brushed my teeth and took out my contacts, ready to finally turn in for the night, I was thinking that should probably make a habit of trying to recognize the successes of each day instead of feeling sunk by the fails. That’s when I realized that I had never finished changing into my pajamas two hours earlier and was still wearing one half of my day clothes.
I guess I DID succeed halfway…
The struggle is real, friends.