Joy Will Come

Before Gabe was born I was told by other moms that the diagnosis and pregnancy part of spina bifida would be the hardest. "It is all so much easier once your baby is born." They explained that after I saw him,  held him, it would not seem as difficult to deal with his likely long term health struggles.

Their advice holds pieces of truth. In that moment when I saw Gabe for the first time I could not help but be joyful for the miracle of birth, his special life, and all that is to come.

Yet, now there is a part of me fighting against each poke and prod instead of kicking peacefully around his warm and cozy spot inside. We are separated by plastic gloves, crunchy gowns, stairs, elevators, scrub in policies, gated doors, and incubators instead of living in one body - like we were just 20 days ago. Anywhere we were our family was together. Gabe was familiar with our voices, noises, and routines. Seemingly the familar sounds and schedules of his siblings have been replaced by his nurses' three hour care times, IV pumps, and monitor beeps.

When we are finally home little Gabe's spina bifida may pale in comparison to having our dear miracle with us, but for now none of this is easier - it is much more difficult than we anticipated.

"Preplanning doesn't make the bumps in the road any less jarring." From the book Chronic Kids, Constant Hope by Hoekstra and Bradford.