I haven't written in a long time....a combination of many thing that I let take me away from this blog....but words and stories have been floating around my brain for a couple of weeks now and I know I need to get back to this...to get our story back out there. So, here I am!
A couple of days ago, I posted a video on our True Heart Tribe Facebook page that showed Eli playing the spoons. Seemingly a minor activity but one that struck a chord with me in a few different ways. Eli's hands have always been really sensitive to him and that has led to difficulty in some areas of therapy because he just couldn't handle pressure on his open palm or hand-over-hand guidance. This video showed just how far he has come as he opens his palm up and gently hits the spoons off his outstretched hand...something I wondered if he would ever feel comfortable with. But there is a deeper feeling that bubbled up in me. One that, again, brought me back to almost 2 years ago when we figured out that Eli had Cri du Chat.
That fateful moment when I first read about Cri du Chat (eyes glued to the computer screen, snack half eaten and forgotten at my side, heart in my throat) Eli, Maeve and Chris were all asleep. It was just me and these new words tumbling into me, connecting to a knowledge I already had about something I couldn't put my finger on. I mentally ticked off the majority of characteristics as I read them but one stuck out for me. Single Transverse Palmer Crease. This is a single crease (as opposed to two creases) that runs along the palm of the hand and, while 10% of the population can have this, it is more prevalent in people with Cri du Chat Syndrome (and Down Syndrome, for that matter). For whatever reason, for me it was a line that would say, "yes" or "no" to this syndrome that I had never heard about before.
On that day, Chris and Maeve woke up first and, while Chris was still blinking at me through sleepy eyes, I started to tell him about what I had read. Again, the Single Palmar Crease came up for me. I wanted to run into Eli's room and check his little hand but I held back. We talked and waited and I tried to distract myself. When I finally heard his little sounds, I made my way to his crib and lifted his little hand in mine. I can still see his sweet hand in my mind as I turned it palm up and slowly opened his fingers. As plain as day, a deep, single line running across his right palm. It was a "yes" and I crumbled. While the other characteristics had been just "maybe" for me, this one, this little line on his hand, was a very real "yes".
How many times did I open up his little hand while I was breastfeeding him in those early days and look at that line? How many times did I cry silent tears about that line, immediately feeling so guilty?
Oh, how far we have come. Chris and I decided early on not to focus on Cri du Chat, to focus on ELI. He is precious and perfect and funny and sooky and determined and stubborn. He is everything he should be and we are going to celebrate that little being with all we are. I remember opening his hand up one day as I had done many times before, but this time I looked at that little line stretching across his palm, said a few word of thanks for this boy who fills my heart and then gently kissed it. It was a relief. A "let yourself feel blessed" moment and I loved it. Eli did too as he smiled a sweet, quizzical smile up at me.
It was a shift, a moment when I knew it was all going to be okay - not without challenge, but beautiful in so many countless ways. The Single Palmar Crease was, at first, a symbol of everything I was scared of. That one little hand. That same little hand also lay gently on my chest during those quiet night time feedings. That same little hand explores the world with a strong pointer finger, curious little thumb and, more and more, with open palm. That same little hand expertly finds out objects and spins them smoothly on any hard service, leading to peals of laughter or looks of serious concentration. That same little hand gently rubs my cheek when I ask him "Where is mama?".
I look back on the time when this little crease brought with it so much fear and it all seems so distant now. I still kiss Eli's hand every day, saying a few words of thanks for our boy. I want Eli to know how blessed we are to have him, every single piece of him. Every nook and cranny, every struggle and celebration. He is ours and we are his.
Love and light,