Just after Nathan was born, I couldn’t look at pictures of Mac when he was a baby. It was too painful for me. Although Mac was a NICU baby and his birth was scary and traumatic in its own way, we knew early on things would be all right. From the first moment I met Nathan, I knew things weren’t.
Over time I was able to go back and enjoy Mac’s baby pictures, grateful to have those memories of becoming a mom. I remember him coming home from the hospital after a long 19 days and thinking it couldn’t get any better than this. Those were some of the most content moments of my life. Staying at home with Mac, napping when he napped, meeting mom friends through playgroups, watching Sesame Street and playing with Little People.
Nathan’s babyhood was nothing like that. It was learning how to work feeding tubes, administer medications, and learning the basic signs and symptoms of aspiration so as to keep him alive. I was also on a steep learning curve of advocating for him in the form of therapy and medical care.
Lately we’ve hit our stride. Both boys are doing well on their very different paths and I’m grateful and–as much as a mom in my circumstances can be–content.
Until I went through a big bin of hand-me-downs.
I’ve saved all of Mac’s clothes to hand down to Nathan. Yesterday I went through a great big bin. Not only did I open a box of some super cute clothes, but I opened up a whole bunch of emotions. They are all the clothes that Mac was wearing around the time Nathan was born. The Mickey shirt he was so attached to from when we went to Disney World and I was pregnant with Nathan but didn’t know it yet. The sandals that kept slipping off his heel but he insisted on wearing down to the NICU every afternoon when Nathan was inpatient. The BabyGap shirts with the little bear on the pocket he wore to the early days preschool. My favorite was the red and navy striped sweater he loved and wore for his school pictures that fall.
I kept calling him from the other room, “Come here! Do you remember this shirt? You were so cute!”
“I don’t care about those baby clothes Mom!”
The things that mean so much to me, don’t to him. At least right now. He is concerned with learning how to shoot a basketball and throw a football. He is still pretending to run a restaurant out of our kitchen and making me “fancy sandwiches” which cost more than regular sandwiches by the way. When I ask him how he learned how to spell sandwich correctly he tells me, “Siri taught me.”
Oh firstborn baby boy. You will never know how much I love and adore you. How much I want to shelter you from the pain that is coming. To connect with you and understand you in a way that will help you. Siri may be able to teach you many things, but not matters of the heart.
When I went through all of those old clothes, I couldn’t help but think how far we’ve come by the grace of God. The hundreds of days between May 31, 2013 and today. The ups and the downs. The moments of utter despair and the moments of inexpressible joy. I would never have felts those highs and lows so acutely had it not been for Nathan’s diagnosis. I can look back and say that I never expected this journey but I am grateful for it.
When Mac looks back at his childhood one day I hope he says the same. The eventual understanding of the hard things in our family–spending more time in doctor’s offices than most kids his age and having other people linger longer when looking at our family and all its differences. I hope he will look back and see how God carried him. And whether he has happy or sad memories attached to his childhood, I hope he knows how very loved he is by us and by God.
Let not the wise man boast in his wisdom, let not the mighty man boast in his might, let not the rich man boast in his riches, but let him who boasts boast in this, that he understands and knows me, that I am the Lord who practices steadfast love, justice, and righteousness in the earth.” – Jeremiah 9: 23-24
Also be sure to check out my list of Favorite Books on Disability!