Baby boy is going strong 🙂 He is holding steady at 18lbs and a little over 29 inches. We just upped his night feeds to 35ml/hr for 8 hours. Today we watched Finding Nemo for the first time on Blu-ray. Lucas has been asking to watch it for a few weeks now. The scenery was beautiful and I felt like I could literally be sucked into it. I thought to myself, wow what a wonderful dream to see all the beauty in the ocean like that.
I found out early this evening a friend’s baby girl, Brooklyn, passed due to SMA. She was a few days shy of being 6 months. Brooklyn’s mom and I joined a palliative care group at the same time and found our babies had been diagnosed just days apart. We have vented to each other, leaned on each other for support, and messaged throughout the day just to be sure we hadn’t gone crazy yet. Even though we have never met and are several states away from each other, I feel we have shared a special bond through this journey.
So right now, I’m sitting in my glider, listening to the thunder roll. This past week has been tough emotionally, even though Logan has been doing great. I can’t imagine how I would have reacted to the world around me if Logan had been getting weaker. It seems the nightmare I have been living is getting worse.
However, something occurred to me tonight as I was attempting to “spring clean”. This is not a nightmare. Sure, Logan has SMA and its incurable. But if I walk into our bedroom, I will see my beautiful baby boy laying on his back, both arms up by his head, with his mouth open sleeping soundly. Most likely tomorrow morning, I will wake up, lift my head just a bit and see his beautiful bright hazel green eyes staring at me with a smile that says “Mommy I’m awake!”. Right now, I am living the dream. I have two beautiful sons who love each other and have a bond that surpasses anything I have ever known. Logan is still strong and has the brightest smile I have ever seen.
Within the past 5 hours, my attitude on life has completely changed. I’m not living a nightmare. I’m living a perfect dream with my husband and two sons. And while I hope this is a long time down the road: The nightmare hasn’t yet begun…