How Do You Celebrate Your 48th Birthday When You Know You’ve Already Exceeded Your Sons’ Life Expectancies?
Saturday 27th February sucked. I woke up to Caleb’s coughing and immediately felt a fear I was introduced to 21 months ago, when my sons were diagnosed with the rare, genetic, progressive, life-shortening, and as yet incurable disease, Cystic Fibrosis.
I cried. Everywhere. Shower. Car. Dentist’s Office. As I told Caleb, “I’m scared. I need you to do your therapies and I need you to live.”
His CF doctor recently gave us next steps in his treatment plan if we don’t get his lung function up: IV therapies at home, twice per day, in addition to his already hour-long therapies every morning and evening.
I never tweet negative things. On Saturday, I did:
“When parenting children with CF, there are some seasons that are so filled with fear, that it is all you breathe.”
“Then you become consumed with guilt because you know that they struggle to breathe. How much greater is their fear?”
On Sunday, the day I turned 48, I purposed to not travel that same path. And I tweeted: “Yesterday was a day of fear and weeping for my sons with CF. Today dawns with new hope and new expectations.”
So what did I do?
1. Accepted anew the fact that sometimes a CF parent just needs to cry it all out. Weeping does endure for a night. Joy does come in the morning.
2. Chose to forget the statistics about the trajectory of the disease and shortened life expectancy.
3. Wrote and posted a blog on LinkedIn entitled, “How to Wear Flats and be Tall Psychologically.” Yes, because when living with CF, we have to look for ways to stand tall, stand strong, just plain stand — even at 5 feet 2.5 inches.
4. Jumped up and down, laughed out loud, hugged Caleb (Nathan was away) and wrestled with him — as soon as I woke up. No. As soon as he woke up. Yes, I still like to think I can win a wrestling match with him. I can’t.
5. Opened the door and got my groceries delivered from Fresh Direct. I ordered them in 5 minutes between tears on Saturday. Having children with CF teaches you even more that simplification of life is a necessity. It allows you more time to invest in and treasure every moment with them.
6. Went to the allergist for my allergy shot. Caleb’s PFTs remain too low so he missed his shots… Again. There, I advertised to everyone, staff and patients alike, about the CFF Great Strides Walk on June 5th. I distributed cards I had made with the link to my team page. Then as I walked home, I kept advertising to anyone with whom I made eye contact.
7. Power walked 9.74 miles in Seaview Park and thanked the heavens that it gifted me with a 60 degree and sunny day in the middle of a NYC winter. Expelled the weight and stress of CF.
8. Reminded my sons how much I love them, how much they are priceless gifts to me every day, how much they are the very breath I breathe, how much they have and continue to shape and mold me, how much they are the only sons I want and the only sons I’ll ever need.
9. Obeyed Caleb when he said, “You’re not cooking today, Babes. I’m getting you dinner. Anything you want, Cuz.” Never mind the fact that I do not cook everyday and I definitely rarely prepare the great Trinidadian meals my sons love.
10. Did not go into work, even though I had reports to write. No outside work for me today. I work hard enough every day for my sons, my school, and with everything I have to do.
11. Wrapped and packaged gifts for six people I know. Other-centeredness and giving are great cures for any day’s solemn sobs.
12. Opened the door and got my laundry delivered by Mr. Chen and Mr. Chi. See # 5 above.
13. Had deep, wonderful, meaningful conversation with my sons… conversation that engaged our hears and strengthened our perspectives and resolves.
14. Rejoiced again (as I do every day) that I have the most amazing, strong, perfect, beautiful, loving, non-complaining, exceedingly grateful, admirable young men of good character as sons. I lucked out, big time.
15. Did not wash dishes. I rarely do anymore. I have dishwasher Caleb for that. Smiles.
16. Celebrated life.
We live this CF thing. And we will rock it until we find a cure. Today — everyday — dawns with new hope and new expectations.
