Navigating the Next Step

Navigating the Next Steps

Some families are baking holiday cookies, going sledding or enjoying vacation together. We’re over here navigating the next step to take in getting Baby Jo some help. How did we get here? I’m feeling melancholy tonight. I wouldn’t change my children for the world, but I also wish that things were easier for both of them.

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Bedtime

Bedtime

Do you ever say the same thing so many times that the words begin to sound odd? This happens to me most nights at around the same time. Bedtime. It’s that magical time when my children run around like wild animals and pretend I don’t exist. Sometimes I spend two hours trying to get these little animals from chasing each other in circles to asleep in their beds.

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“Cuddle Me, Mommy.”

Cuddle Me, Mommy

Historically speaking, Baby Jo hasn’t been much for cuddles. She would push me away as a baby and later ran away from me as a toddler. In those rare moments she actually wanted a little cuddle time, she preferred her daddy. Baby Jo was just 3 months old when C had his first hospitalization. I felt like my attention was unevenly divided for most of her life as a result of her brother’s medical needs. The weight of that guilt dragged me down for years. It still bothers me a bit, even though I know I tried my very best.

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Pity Party for One

Pity Party for One

I have been at this special needs parenting gig for a while now and most things don’t phase me anymore; but, there are certain things that hit me a little harder than usual. Sometimes the stressful things happen consecutively and I find myself wanting to crawl in bed, have a good cry and enjoy a pity party for one.

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Bubby and Sister

Bubby and Sister

If their birthdays weren’t one year and 364 days apart, you might think they were twins. Baby Jo and C are inseparable. When C gets dropped off at therapy in the morning, Baby Jo frequently asks when we will pick him up. When C gets done with therapy, the first person he runs to hug is Baby Jo. My little trouble team conspires together, encourages each other and loves one another fiercely. Bubby and Sister share a wonderful sibling bond.

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It Happened Two Years Ago

Hospital Day 4

I’m sitting here in silence after my children are in bed and it hit me: it happened two years ago. Two years ago, I called the doctor and the pediatric GI because C stopped eating and drinking. He was lethargic. We were told to get him to Children’s Hospital. I rushed around, packing and making arrangements for 3-month-old Baby Jo.

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