Originally posted on May 14, 2014. I came across this post from my birthday last year. I haven’t had much time to reflect on this year as it relates to me. Only that I know God is continuing to transform me into a new creation.
Today is my birthday. One year ago today I was pregnant and admitted to the hospital (for the second time) for low fetal movement. Just a pre-cursor to what was ahead. I didn’t know it at the time, but yet I knew it.
I’ve spent the last year with one foot in my past life and one foot in my future life. Not quite able to live fully as “Old Me” or “New Me.” It all really began that first night after my second son was born that we were quite sure something was terribly wrong. After I delivered him, I wanted to be Old Me pregnant again and wearing the comfy black cotton maternity skirt I had on just the day before. I wanted to regain the innocence of not knowing anything of this terrifying and devastating diagnosis. I tried not to look at the super cute Skip Hop diaper bag staring at me from the corner of my hospital room. It was all packed and ready for this baby who was now five floors away and upstairs in the NICU. It wasn’t needed now. New Me would go home before by baby and take that useless bag with me.
Every normal life thing that I did in those first weeks and months following his birth, I seemed to be trying to cross over from Old Me to New Me. Old Me lived here in this little brick house with one perfectly typical child (not perfect mind you) who had all sorts of typical kid toys everywhere. New Me now lives in this little brick house also has a child with disabilities who has, in addition to baby gear, lots medical equipment all over the place. Old Me shopped at my neighborhood grocery store and could browse the aisles without people thinking we were anything other than an ordinary family. New Me will make a scene when she puts her obviously different child into the shopping cart.
I clearly remember a Costco trip with Nathan not long after he was discharged from the NICU. I looked at him–really looked at him–in his car seat and everything that is different about his appearance overcame me. In that moment I thought everyone in the store knew our secret too and I rushed through there just as fast as I could since he was also crying constantly–like a kitten–and what if someone thought he sounded like a cat. I was actually in Target once when that happened. A little girl said to her mother, “Mommy that baby sounds like a kitten.” The mom graciously responded, “No, honey that’s what babies sound like.” Instead of running, this time I was embittered and wanted to correct her, “No they don’t. Just the ones who are missing material on their 5th chromosome.”
I remember the weekend vacation we took last fall to San Antonio. I took Mac to the pool. Nathan was maybe three months old and stayed in our hotel room with my husband to nap. I remember thinking, “I’m going to pretend that I’m Old Me and that New Me, who has this new baby, doesn’t exist. I tried to just be Mac’s mom (Old Me) as we splashed around. But New Me was fighting hard for a presence there too. Whether Nathan was in sight or not he was certainly invading my heart.
Old Me and New Me are still duking it out. As much as I want to move past this year, I don’t. I want to linger in the baby-ness of Nathan for as long as I possibly can. I want to cling to “normal” until I absolutely must let go and surrender to New Me. The syndromic differences aren’t that accentuated yet to the average person. And he is still very much a baby. The only impressive thing that he does really is roll…to the left.
With time I’ve certainly grown more into New Me. I do think Nathan is about the cutest thing ever, just the same as every parent feels about their child. He’s sweet and cuddly and so incredibly attentive and observant. He has this eye contact that is piercing. He sees things in my eyes and communicates with me in a way that Mac never did. It’s as if he knows he’s from a different place and he knows exactly what to do, in his own little way with his “one wild and precious life.” Not in the way the therapists tell us he should be doing, but in a way that we will have to learn from him as he teaches us and grows us.
We’ve almost made it a year. Everything I was reading about Cri du chat syndrome a year ago said that many of these complex babies (that’s N) don’t make it through their first year. Here we are standing after many, many tears, some significant sacrifices, battle scars, and even some regrets. Yet he’s doing more than we thought. And though I still hate the diagnosis that he’s identified with, I’m so in love with the little boy who lives inside it all.
I was in Target last week. (Yes, I go to Target a couple of times per week on average but don’t judge me it’s also N’s pharmacy.) I ran into a bunch of young adults from a group home. I found a little corner where I could pretend I was reading greeting cards and watch them together with their ever-patient and loving attendant. They were shopping and communicating with each other like friends do and being very well-behaved and just doing a very normal thing, though they looked anything but normal. New Me told Old Me that a year ago I would not have even noticed these people–the least of these–who are so incredibly precious to God. And that really New Me was going to be just fine. That realization–a true and weighty birthday gift indeed.
Then Jesus said to his host, “When you give a luncheon or dinner, do not invite your friends, your brothers or sisters, your relatives, or your rich neighbors; if you do, they may invite you back and so you will be repaid. But when you give a banquet, invite the poor, the crippled, the lame, the blind, and you will be blessed. Although they cannot repay you, you will be repaid at the resurrection of the righteous.” -Luke 14: 12-14
Also be sure to check out my list of Favorite Books on Disability!