I’m writing on a small white table in the playroom, just like I was the day we moved into this house. At the time, Kat and Violet were at my mom’s house and I was waiting for Scott to arrive with the movers. It was November and I was trying to get in words for my NaNo novel, incidentally the one I’m currently working on now. It was a bittersweet moment, as these moments often are. We were moving away from the house where I had all my memories of Macy.
I can turn every conversation back to Macy. I don’t always—I’m cognizant of the fact that it may bother some people. However, as a mother who has lost a child way too soon (and for every mother who has lost a child, it is too soon, period), she is never far from my mind.
My little Macy will celebrate her fifth birthday this month. Five birthdays away from us. One day the number of years she should/would be will outnumber the age I was when I had her.
The founder of NILMDTS wrote a lovely piece about how much she missed her son and how she often imagines him as a healthy little boy, when the reality is that he did have some medical problems. (I’m paraphrasing, Miss Cheryl, and if you happen to be reading this, I hope that it’s okay.) I’ll be honest and say that I imagine what Macy would be like too. I imagine her without her heart and lung issues that prevented her from surviving birth, but I never ever imagine her without trisomy 18. So the reality is that she may not have made it to even her first birthday. But I still imagine her as a tiny five-year-old, just maybe more delicate than her sisters.
In my time as a pediatrician, I have had the privilege of meeting some amazing kids and parents. The ones that stick with me the most? The families and parents of ‘special needs’ kids, the kids with complicated chronic medical illnesses, the kids with Down Syndrome or other genetic abnormalities. I have never, ever heard a parent of a child with disabilities complain about taking care of their child. I have only ever seen love and dedication, even through little money, little support, even when facing death.
Perhaps that’s why I picture Macy with her trisomy 18, why I picture me as one of those parents. God knows I’m not a patient person, but I can be when I need to. I like to think that Macy would have brought out the best in me. Maybe she already has.
I’m not changing the world by founding a foundation of photographers who help create the most precious memories. I haven’t founded a walk or or place that fundraises to help other families and special babies. But, I like to hope that I’m changing myworld little by little, piece by piece, by sharing my experience and by acknowledging the families who continue to care for their special needs child through every feeding and every nebulizer treatment.
This year we will celebrate Macy’s birthday as we do every year. We take the day off, we go somewhere special, we smile bittersweet smiles and we let our girls know—all of our girls know—just how irreplaceable, joyful, cherished and loved they are.
Happy 5th Birthday, my Macy Button. You are always in my heart.