Happy anniversary, blog

One year ago today, I hit “Publish” on my first blog post.

So much has happened in that time; it feels as though years have passed since then. Yet time also feels fast and compressed as though chunks of the last couple of years have blurred together. The other day Greg commented on how hazy a five-month period earlier this year was. We had both been working but didn’t have childcare.

I’m feeling particularly foggy today. I keep losing things and forgetting what I was saying.

It’s because Raphael had one of those nights. The kind that involves endless rocking, multiple vomiting episodes, more rocking, fever, worry, crying, gasping for air, and rocking. Even though we’ve been here several times, it is always heartbreaking. And unnerving.

We can’t help but be reminded of the difficult times of the past, the times when we weren’t sure Raphael would survive. It hurts so to see my little boy hurt. It’s frightening when his rapid-fire breaths are so shallow and his hot little body trembles. It is nothing like when our typically developing child gets sick.

We try every remedy in our bag of tricks. Saline. Suction. Ibuprofen. Tylenol. Holding him upright. Rescue meds (Raphael uses Xopenex as a bronchodilator.) Did I mention rocking?

Before dawn, Raphael fell asleep.

At the pediatrician’s today, he was all smiles and hilariously jumping around on all fours. He is OK.

When Raphael gets a viral head cold, his little airway and inability to deal with secretions turns him into a very sick child in the middle of the night. His airway and digestive system wreak havoc with each other. A junky head leads to inflammation in the airway, which leads to more mucous, which leads to gagging, which leads to vomiting and aspiration, which leads to crying, which leads to fever, which leads to breathing problems, which leads to more inflammation, and the vicious cycle continues.

Raphael’s health, and the health of children who like him, have Down syndrome, is such a delicate balancing act.

No wonder things feel so jumbled for me and time somehow seems to speed by in slow motion.

About elizamom

Colorado mother of two small boys. One happens to have Down syndrome.
This entry was posted in Down syndrome, Parenting Special Needs, Reactive airway, Stress and tagged , . Bookmark the permalink.

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