Thursday, June 3, 2010

Let's Get A Little Caught Up

Ok, this is going to be the Cliff's Notes version of Lyla's first couple of weeks since mom had a little time out from blogging in order to sneak in a shower here and there...

First, I hatched.Then Lyla got to come home to her new crib on the water. Welcome to Beantown baby, full of Dunkin Donuts and the craziest drivers imaginable that mama has to yell at every day.The first week was full of sleep, one of the benefits of a baby who is early. They're still on womb-time and you get to recover from the marathon of pushing. She was always snuggled up in one of her cushiony blankets, warm as can be with a cap on to keep it all in. I love baby hats. Simply impossible to not stare at and inhale her all in.We had many first milestones that I got to freak out over. It's amazing how your baby sneezes, and you're excited over snot rocketing for her. You've done it a million times yourself, but that little mouse-like sneeze is the cutest thing in the world.
The first time Mom figured out how to use the jigsaw puzzle carseat.
The first time Auntie Lulu got a hold of Lyla's wardrobe.
The first time we heard cries that melted our hearts. But she ended up loving bathtime and still does.The first outfit in pink. I dont know what it is about this color, but it just makes you feel so lucky to have a little girl.

These were the good times that brought us up from the bad. The first few weeks were hard in coming to terms with the firsts of Down Syndrome. The first time hearing medical jargon that was way over my head, but when broken down meant she has a common Downs heart defect that will require open heart surgery in her first year. Ouch. The first talk we had with a fellow parent of a 12-year old child with Down Syndrome...who let us know her son was still signing because he wasn't able to talk yet. Damn. The first visit from a social worker who informed us of our new world of Early Intervention and a Down Syndrome Clinic- both of which I knew nothing about, and just nodded upon hearing of like I knew what they entailed. Social worker? The first cardiologist appointment where I had to see my 6lb infant being swallowed by an adult-sized medical exam table, and hooked up to wires and stickers bigger than her own limbs. Where are we? The first time being in public at the pediatrician's waiting room, wondering if the other moms quietly realize she has Downs after coming over to admire her little pink strawberry hat. How do I do this?Like nature intended, the good always outweighs the bad. It's all just live and learn. We're living in the moment and learning along the way how to handle all of these new firsts. Sometimes it involves tears, sometimes it involves silent terror. But it always involves eventual acceptance of where we're at and moving forward to the next first.


  1. Such an inspiration, you are. I admire you... A LOT!

  2. jess! LOVE THIS. i am in tears! 1st- your daughter is amazing! beautiful face and soul. I wish you lived closer so I could see you and her. 2nd- you CAN do this. I was terrified before Sarah's surgery. I think it was about the unknown. I had so many questions. I didnt haveanyone around here who identified with my scenerio. I was one of the ONLY babies who had clefts and exclusively they really didnt know how to help me as far as learning to cup feed on a schedule, etc. I sincerely wish that I had someone to talk to. It sounds like you have an entire community of support, both in family and in others on the same path as you. I know that it can start to feel like all you do is go to doctor's appointments. like a new hobby! grrr. I am not going to patronize you and tell you what I heard a million times as if people knew at all what Iwas going through... "These doctors are amazing now-a-days. They do these surgeries all the time". Blah Blah Blah. You know this of course. But what I wanted to tell you is if you only knew how amazing YOU will be. Your mamma instincts will kick in. Your whole life of lessons learned and all the hard times you had to go through boils down to that moment. Something will jus click and you will go into "amazing Mommy" mode and YOU WILL GET THROUGH THIS. Lyla is lucky to have you. Much love,

  3. Jessica, I admire your strength. Lyla is absolutely perfect.