So, we have a friend who had a baby very prematurely. He's done so well and he finally got to come home after a lengthy stay in the NICU. Their latest updates are letting folks know he can't have visitors and they are posting tons of pictures. For some reason, his birth and life in the NICU have affected me so deeply. I would read their updates which were good, but still my heart ached for them. I would find myself in puddles of tears as I connected with the situation they were now living in with their very fragile newborn. Everyone's story is different, however, if you've been a NICU situation you can connect. I was beyond thrilled he was thriving and I'm beyond thrilled that he is home.
I look at his pictures and I see little Lillian, the trach, the fragility. I remember my fears and at times can't even fathom that 13 years have passed and I'm in puddles.
Lillian still has Christmas and birthday money she's been holding on to. This girl loves her baby dolls and there can never be enough clothes. We have found that preemie baby clothes often fit her dolls so last night big sisters Bethany and Madeline took her to Walmart and she bought some clearance baby clothes for her dolls, and then they hit the Mcdonald's drive thru for a coke. She had SO much fun. (course crazy town mom asked second sister to go for extra eyes and attention ) For a moment, Lillian lived a "normal". I mean, I know most 13 year old girls are not out buying baby doll clothes. but for me, she was out there shopping with her sisters and having a girl's night even if it only lasted less than an hour.
I'm also experiencing a "normal" sibling rivalry. All the big sisters have adored Lillian. Never competed with her...just pure love, adoration, and protection. Having had a a younger sibling now, and now that he's older it's quite funny to see him react with a little jealousy and give her some sass. He told her this morning "she is nevva going to go with me when I go somewheya with my sistas" Little bits of normal have slid in and oddly comforted my aching heart.
The last week has been stressful and filled with some PTSD. Seriously, tough on me this week. I know God is in control and I'm praying and seeking his will for what steps to take next. I *think* we are going to resume speech therapy for swallowing and go from there. At the point, for me, I'm not willing to risk any type of surgery. There are no guarantees and even a 50/50 chance is not good enough for me and honestly, they can't give me a guarantee of anything.
Today, I'm thankful for a pictures of a healthy, healing, growing baby boy, for the snipits of somewhat "normal" events, and the love that comes from a phone call checking in on me.
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