For my husband and I, we truly treasure the little “normal” moments we get to have with Lyra. There are many things we sometimes feel we have missed out on. We are yet to hear a true first word, see her point at an object, or watch her take her first independent (and controlled) steps. There are also little bonding moments we feel like we missed out on. Things like little naps together have never really been part of our lives for a whole host of reasons. But every now and then, we get a little window into the world of an average parent, and we just treasure those moments. They stick with us and we think back on them for days/weeks/months. One of those little moments happened the other night… morning is more accurate.
About 4:30 in the morning Lyra woke up crying. While it isn’t unusual for her to be up at that hour, the crying was abnormal. So, I went in to check on her and she was definity having trouble calming down. So, I disconnected her from her pump (her feed had finished an hour earlier, so it was safe to do so), changed her diaper, disconnected her extension, closed her button, and brought her into bed with us. And….. she actually fell asleep…. Now, I may have only had a few inches on bed to sleep on, but I was actually given a chance to curl around my baby girl in bed.
For many parents, little bits of co-sleeping like this are common and sometimes annoying. For us? We can count the number of times Lyra has slept in bed with us in the last 2.5 years, even for a short period of time, on one hand. There are a myriad of reasons for this:
- In the hospital it isn’t safe to co-sleep
- She typically just kicks us and doesn’t sleep
- She creepily stares at me while I try to sleep
- She is connected to a machine or a monitor and it’s too easy for us all to get tangled in the chords causing alarms or feeding the bed
- She vomits…. all the time…. still
But conditions were just right the other night. She must have had a bad dream (hence the crying) and was still sleepy. She wasn’t connected to a feed, so the chance of her vomiting was much smaller, and we didn’t have to worry about getting tangled in the tubing. In the end, all three of us fell back asleep for about another hour before we had to get up.
It was sweet, and normal, and wonderful. It was one of those little moments that I often crave and rarely get. My husband and I greedily hoard those moments in our memories. I know that it is something so normal, but for us the “normal” moments are incredibly rare.
This is a beautiful posting. I could feel what you were feeling. Love to you all. A & G
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Hello Jamie,
i’m glad i found your blog these days, i read it and watched the fotos of your daughter. They touched me, because i can see the similarity with my son. I’m mother of a boy with Trisomy 9p (and a little bit of q), Franz was born in march 2015, nearly same age as Lyra. He has no severe medical problems, but he’s so slow in his development, none of the milestones was reached, does not speak or walk. I’ve made a few of of your expiriences and i think its great and necessary that you write them down. All the best to your family, greetings from Germany, Sophie
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Thank you Sophie. I am so glad you found this! You are the first person I have heard from with a child with Trisomy 9p. So happy to meet you.
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