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 little munchkin 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. And 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 him 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 who had all sorts of typical kid toys everywhere. New Me now lives in this little brick house also has a disabled child who has, in addition to baby gear, lots medical equipment all over the place. Old Me shopped at my neighborhood HEB 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 broken and obviously different child into the shopping cart.
I remember the weekend vacation we took last fall to San Antonio. I took M to the pool. N was maybe three months old and stayed in our hotel room with my husband. 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 M’s mom (Old Me) as we splashed around. But New Me was fighting hard for a presence there too. Whether N 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 N 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 N 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 M 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 that ECI tells 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 and I found a little corner from where I could 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 who are so incredibly precious to God. And that really we are all the least of these. That realization – a true and weighty birthday gift indeed.
34 “Then the King will say to those on his right, ‘Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. 35 For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, 36 I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.’
37 “Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? 38 When did we see you a stranger and invite you in, or needing clothes and clothe you? 39 When did we see you sick or in prison and go to visit you?’
40 “The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!